I do not intend this to be a complaint blog about the cost of mental health care, interventions, getting the right accommodations, etc. BUT I will detail out of pocket expenses for unique kiddos. I hope the tone comes across as dismayed but grateful. Dismayed that SO many cannot do these things for their children that we found necessary, even when they find out about them and have at least some level of access to them. Grateful because we are able to - it takes a massive spreadsheet and micro-managing budgeting down to the dollar, but we are able. We give up vacations, visiting family, put off home improvements, eat in, drive used cars, do our own yard work, say NO to outings, but it is all worth it and we are so utterly and eternally grateful that we are in a position to give those things up to make the therapies, supports, etc. happen for our kiddos. When I talk to friends with less unicorn-like kiddos, conversations may edge towards how expensive kids can be. Growing out of clothes, outgrowing bikes, sport fees, tutoring fees, movie costs, gaming costs, etc. I have stopped replying with anything but a "don't I know it" and no longer add, "yeah, add $140/week therapy costs"... I get the three-headed stare or a very kind attempt at solving that issue by saying "can't you use someone in network?". This used to lead to explaining what a HDHP is and how mental health is never really covered under those and meeting the deductible is catastrophic health issues only ($9000 out of pocket). So, it is easier to just know that we are making the right decisions - healthcare and financial - and stick with the "don't I know it" because we do. We really do and we are intensely grateful for it.
Annual expenses for being different
Weekly Psychologist $140 x 52 = $7280
Monthly Psychiatrist for 2 kiddos $120 x 2 x 12 = $2880
Weekly OT for 2 kiddos $50 x 2 x 52 = $5200
IEP Navigator for 2 kiddos $1000
Weekly Vision Therapy $80 x 52 = $4264
Medication 1 $97 x 12 = $1164
Medication 2 $25 x 12 = $300
Medication 3 $25 x 12 = $300
No WAY am I trying to tally up the probiotics, omegas, Kavinace supplements
Annual cost in CASH = $22,388
Confession - that all happened in a single year, but not this year. That was a tough year all around - emotionally, financially, marital, etc. We got through it with all the amazing professionals behind those line items. Doing all of that got us to stable mode, so now, we're more like this:
Bi-Weekly Psychologist $140 x 26 = $3640
Quarterly Psychiatrist $120 x 2 x 4 = $960
No OT
IEP Navigator for 2 kiddos $1000
No Vision Therapy
Medication 1 $97 x 4 = $388
Medication 2 $25 x 12 = $300
Medication 3 $25 x 12 = $300
Annual cost this year is $6588.
But here's the deal, many differently abled kiddos do not have parents that can afford out of pocket mental health care. Even a GREAT in network psychologist didn't come anywhere close to handling what we needed with The Critter -flexible, demanding, kind, SMART, persistent, diligent, creative. She is herself a unicorn in her field and nothing less would have reached The Critter(or dare I say, me?).
So, next time you see a vote come up or a political position on Early Intervention, teacher assistants, special education, paraprofessionals, IDEA funding, consider that caring properly for these kiddos who cannot get outside help benefits us all. As the last post stated, these are OUR neighbors and OUR community, not some otherness that can be ignored.
Friday, November 3, 2017
Tuesday, October 10, 2017
Inclusion and Suicide - Fighting to Fit
This month, a child in our neighborhood with differences took his own life.
The previous post is about our family's wishes for peace and strength for his family and friends. This post is about my personal thoughts on what factors in a community environment might prevent a similar desperate act in my own children and other children with differences. Specifically, how might inclusion play a part in helping prevent suicide in differently abled kiddos and the limitations inclusion doesn't fix.
Studies show that suicide ideation in the autism community is high and rising. One study showed 66% of adults newly diagnosed with a form of autism, Asperger's, contemplated suicide. Another study showed that suicide is a leading cause of premature death in people with ASD. If other parents of uniquely wired kiddos are anything like me, mental health is the top thing we worry about, read about, parent about in our kiddos. This isn't just parents of spectrum kiddos. ADHD, LD, developmental differences, SPD - the DIFFERENCE between how the critters think/move/behave/speak/learn and how most of the rest of the world does these things can make life HARD. They may feel like aliens in their own community - dropped in from another planet. This is where I think inclusion comes in...
INCLUSION - such an easy word, right? Simple. Just don't exclude others. Include them in the classroom, the community, etc. Nope. Even educational experts disagree on what really good inclusion practices should be and how to deliver them right now. Some believe that FULL inclusion into general education with all services/accommodations being delivered in that classroom all the time is the goal. Others believe that good inclusion does not always mean that education must happen in the classroom, and that self-contained classrooms where children do not encounter general education teachers, students or areas of the school are appropriate. My personal feeling is that good inclusion stretches the child's skills so they can develop while still servicing/accommodating them at a level so they can access their education. More importantly, how that is achieved best will look different for different children.
Our personal experiences have ranged from full general ed with poor supports whether those supports were delivered as push in(special ed teacher goes to general ed classroom) or push out(child goes to special ed room) to a self-contained classroom to pushing out into general ed with a 1:1 aide from that self-contained classroom to full general education with all supports delivered by the general ed teacher except when intervention is necessary. At any point in time during our journey through all of those "settings", I never felt like it was the setting that was preventing or providing the benefits that come with inclusion. Sometimes and thankfully rarely, it felt like the general education teacher was the barrier to inclusion. Sometimes, it felt like it was the other parents that were the barrier. Sometimes, it felt like it was the other students. Mostly, I KNEW that it was the DIFFERENCE mentioned above not being addressed openly that was preventing inclusion. One time, it was definitely the principal preventing inclusion. Paradoxically, we finally found inclusion in a self-contained classroom setting, even if it wasn't the inclusion many speak of where a child with differences learns alongside his general education peers with smiles and friendliness. Instead, it was inclusion with the special ed teachers, the aides, the other children labelled "Emotionally Disturbed" regardless of their age(the classroom was K-5) and finally, inclusion with the general ed teachers with the special ed teachers as a bridge.
Through all of the placements and accommodations, we could never win the Fight to Fit. It is 5 years past when things went sideways, and we still are Fighting to Fit. It is worth noting that The Critter is not prone to valuing others and so does not chase friendship, for lack of a better term. I worry that this will mean he is isolated as an adult, leading to depression and mental health issues, but that's what I worry about ALL.THE.TIME anyway. So, instead and for now, I am glad that he has a few peers he considers worthy of his time and is starting to learn what his peers do to maintain friendships - text, call, respond, share interests - but mostly glad that he does not eagerly chase trying to fit. I think for kiddos who are different and desperately want to fit, the absence of that feeling must be agony.
For inclusion to work, the environment it is being seeded into must be receptive. If you place a child who blurts out, yells inappropriately, hand flaps, can't sit like peers, (insert your own difference here) into an environment where the students are not prepared to ACCEPT, let alone if a teacher is not prepared to accept, it will fail. The child does not feel included if they are shunned by their peers and ignored by their teacher. Instead, they feel their DIFFERENCE even more acutely and even worse, they feel it is bad, unacceptable, unwanted. I have read that anger/frustration turned inward is depression - while it sounds like psychobabble-ese, it suits me to use that now. Are uniquely wired kiddos more likely to turn anger inward? Are they more likely to turn anger outward, which leads to outbursts and potentially violence? Are they less likely to process those angry feelings and manage them? My personal belief is a resounding YES! So if the environment is not ready for inclusion, if the teacher and the students have not already had the groundwork laid so that they are capable of including others who are different and unexpected, Fighting to Fit is left as an internal issue for a child already fighting their brains, their bodies to just BE in this world not built for them.
I personally do not think that changes to educational policy on inclusion is enough on its own, and that policy on practices that change the tone of our schools and classrooms is required. Again, inclusion only works if the environment is ready for it. Our best placements were at schools that were diverse and intentional in their social emotional learning - for students AND for teachers. Tone and Inclusion are like the Calcium and Vitamin D of the educational world, I think. Without one, the other one doesn't work. I need to call out The Positivity Project here. Our district is rolling this program out to help kids at a young age learn that other people matter and that those other people in your community, are still in your community regardless of differences. Across the 7 schools and all the different positive behavior and social emotional learning curriculum we've seen, this one strikes me as an amazing fit for children and teachers alike. At our house, we like to tell the critters that "you live here, too" so that they understand that this is THEIR HOME, THEIR NEIGHBORHOOD. This program strikes me as starting at the same point - these are YOUR peers and YOUR community, not something other and external that can (and certainly not should) be ignored and avoided. Without that approach, inclusion is not inclusive from the point of the differently abled, it is simply sharing space. I will say that without inclusion, which has been shown as beneficial for everyone, not just those who are different, there is no challenge to understand differences. Inclusion has challenged The Critter's peers and teachers enormously, but to the betterment of all of them. The last time The Critter shut down in a general ed classroom, his peers were saying, "Feel better" instead of "What's wrong with him" or worse, laughing and pointing(YES, this has happened). The Critter learns that his peers are not unsafe, and school is not unsafe. His teachers and peers learn that he struggles mightily and is HAVING a hard time, not intentionally giving a hard time. Exposure works for both sides of the inclusion equation. It is the first step in the Fight to Fit - not feeling unsafe in your community just because of who you are. After that comes feeling accepted, supported and competent. Shout out to The Autism Discussion Page for that language - safe, accepted, competent. It changed our lives, giving us goals that create a positive feedback loop for The Critter and everyone else so that everything else becomes easier.
My hope is that The Critter and Younger Critter will suffer just enough to learn and grow and not so much so that they give up on peer relationships. What keeps me up at night is that much of this is out of our hands, and instead in the hands of the parents of their peers to teach them to be curious of differences instead of fearful. As the critters age, my influence on them dwindles, and their peer's influence grows. If peers are resistant to getting to know them, let alone downright cruel, where does that leave the Fight to Fit?
I'll close with a fantastic resource for everyone, the National Alliance on Mental Illness(NAMI). There is support for suicide ideation, family members, community alliances, and much more.
Reach out to support that is there, please. AND, if you're in my neighborhood, send your kiddo over. I guarantee they will be safe and accepted in our home.
The previous post is about our family's wishes for peace and strength for his family and friends. This post is about my personal thoughts on what factors in a community environment might prevent a similar desperate act in my own children and other children with differences. Specifically, how might inclusion play a part in helping prevent suicide in differently abled kiddos and the limitations inclusion doesn't fix.
Studies show that suicide ideation in the autism community is high and rising. One study showed 66% of adults newly diagnosed with a form of autism, Asperger's, contemplated suicide. Another study showed that suicide is a leading cause of premature death in people with ASD. If other parents of uniquely wired kiddos are anything like me, mental health is the top thing we worry about, read about, parent about in our kiddos. This isn't just parents of spectrum kiddos. ADHD, LD, developmental differences, SPD - the DIFFERENCE between how the critters think/move/behave/speak/learn and how most of the rest of the world does these things can make life HARD. They may feel like aliens in their own community - dropped in from another planet. This is where I think inclusion comes in...
INCLUSION - such an easy word, right? Simple. Just don't exclude others. Include them in the classroom, the community, etc. Nope. Even educational experts disagree on what really good inclusion practices should be and how to deliver them right now. Some believe that FULL inclusion into general education with all services/accommodations being delivered in that classroom all the time is the goal. Others believe that good inclusion does not always mean that education must happen in the classroom, and that self-contained classrooms where children do not encounter general education teachers, students or areas of the school are appropriate. My personal feeling is that good inclusion stretches the child's skills so they can develop while still servicing/accommodating them at a level so they can access their education. More importantly, how that is achieved best will look different for different children.
Our personal experiences have ranged from full general ed with poor supports whether those supports were delivered as push in(special ed teacher goes to general ed classroom) or push out(child goes to special ed room) to a self-contained classroom to pushing out into general ed with a 1:1 aide from that self-contained classroom to full general education with all supports delivered by the general ed teacher except when intervention is necessary. At any point in time during our journey through all of those "settings", I never felt like it was the setting that was preventing or providing the benefits that come with inclusion. Sometimes and thankfully rarely, it felt like the general education teacher was the barrier to inclusion. Sometimes, it felt like it was the other parents that were the barrier. Sometimes, it felt like it was the other students. Mostly, I KNEW that it was the DIFFERENCE mentioned above not being addressed openly that was preventing inclusion. One time, it was definitely the principal preventing inclusion. Paradoxically, we finally found inclusion in a self-contained classroom setting, even if it wasn't the inclusion many speak of where a child with differences learns alongside his general education peers with smiles and friendliness. Instead, it was inclusion with the special ed teachers, the aides, the other children labelled "Emotionally Disturbed" regardless of their age(the classroom was K-5) and finally, inclusion with the general ed teachers with the special ed teachers as a bridge.
Through all of the placements and accommodations, we could never win the Fight to Fit. It is 5 years past when things went sideways, and we still are Fighting to Fit. It is worth noting that The Critter is not prone to valuing others and so does not chase friendship, for lack of a better term. I worry that this will mean he is isolated as an adult, leading to depression and mental health issues, but that's what I worry about ALL.THE.TIME anyway. So, instead and for now, I am glad that he has a few peers he considers worthy of his time and is starting to learn what his peers do to maintain friendships - text, call, respond, share interests - but mostly glad that he does not eagerly chase trying to fit. I think for kiddos who are different and desperately want to fit, the absence of that feeling must be agony.
For inclusion to work, the environment it is being seeded into must be receptive. If you place a child who blurts out, yells inappropriately, hand flaps, can't sit like peers, (insert your own difference here) into an environment where the students are not prepared to ACCEPT, let alone if a teacher is not prepared to accept, it will fail. The child does not feel included if they are shunned by their peers and ignored by their teacher. Instead, they feel their DIFFERENCE even more acutely and even worse, they feel it is bad, unacceptable, unwanted. I have read that anger/frustration turned inward is depression - while it sounds like psychobabble-ese, it suits me to use that now. Are uniquely wired kiddos more likely to turn anger inward? Are they more likely to turn anger outward, which leads to outbursts and potentially violence? Are they less likely to process those angry feelings and manage them? My personal belief is a resounding YES! So if the environment is not ready for inclusion, if the teacher and the students have not already had the groundwork laid so that they are capable of including others who are different and unexpected, Fighting to Fit is left as an internal issue for a child already fighting their brains, their bodies to just BE in this world not built for them.
I personally do not think that changes to educational policy on inclusion is enough on its own, and that policy on practices that change the tone of our schools and classrooms is required. Again, inclusion only works if the environment is ready for it. Our best placements were at schools that were diverse and intentional in their social emotional learning - for students AND for teachers. Tone and Inclusion are like the Calcium and Vitamin D of the educational world, I think. Without one, the other one doesn't work. I need to call out The Positivity Project here. Our district is rolling this program out to help kids at a young age learn that other people matter and that those other people in your community, are still in your community regardless of differences. Across the 7 schools and all the different positive behavior and social emotional learning curriculum we've seen, this one strikes me as an amazing fit for children and teachers alike. At our house, we like to tell the critters that "you live here, too" so that they understand that this is THEIR HOME, THEIR NEIGHBORHOOD. This program strikes me as starting at the same point - these are YOUR peers and YOUR community, not something other and external that can (and certainly not should) be ignored and avoided. Without that approach, inclusion is not inclusive from the point of the differently abled, it is simply sharing space. I will say that without inclusion, which has been shown as beneficial for everyone, not just those who are different, there is no challenge to understand differences. Inclusion has challenged The Critter's peers and teachers enormously, but to the betterment of all of them. The last time The Critter shut down in a general ed classroom, his peers were saying, "Feel better" instead of "What's wrong with him" or worse, laughing and pointing(YES, this has happened). The Critter learns that his peers are not unsafe, and school is not unsafe. His teachers and peers learn that he struggles mightily and is HAVING a hard time, not intentionally giving a hard time. Exposure works for both sides of the inclusion equation. It is the first step in the Fight to Fit - not feeling unsafe in your community just because of who you are. After that comes feeling accepted, supported and competent. Shout out to The Autism Discussion Page for that language - safe, accepted, competent. It changed our lives, giving us goals that create a positive feedback loop for The Critter and everyone else so that everything else becomes easier.
My hope is that The Critter and Younger Critter will suffer just enough to learn and grow and not so much so that they give up on peer relationships. What keeps me up at night is that much of this is out of our hands, and instead in the hands of the parents of their peers to teach them to be curious of differences instead of fearful. As the critters age, my influence on them dwindles, and their peer's influence grows. If peers are resistant to getting to know them, let alone downright cruel, where does that leave the Fight to Fit?
I'll close with a fantastic resource for everyone, the National Alliance on Mental Illness(NAMI). There is support for suicide ideation, family members, community alliances, and much more.
Reach out to support that is there, please. AND, if you're in my neighborhood, send your kiddo over. I guarantee they will be safe and accepted in our home.
Thursday, September 28, 2017
Tragedy "On the Spectrum"
A young man in our neighborhood took his own life this month. We did not know him other than having seen him perform for his next belt at the local karate dojo where our son went or to see him walking in the neighborhood. Still, it hit hard knowing that a young person in our own neighborhood, who went to the same schools our critters will go to and was a member of our community battled internally so much that he saw this as the best solution, even for a moment. Our thoughts and love go to his family and friends he left behind.
Here's where it took an even harder toll. A fellow neighbor confided in us that he was "on the spectrum", and while that phrase could mean a myriad of things coming from a neighbor who also was not close to the family, to us, it means that another child battling anxiety, autism, attention like ours do did not feel safe, accepted and competent and certainly not included, enough to know that this was not a solution. Again, our thoughts and love go out to his family and friends he left behind, even more so because we can relate to that phrase, "on the spectrum" and know it comes with an otherness for The Critter and our family that no intervention seems to change. Hugs and strength to all "on the spectrum".
After starting this post about Fighting to Fit, I find it more fitting to end this post here, simply with wishes for love and strength to all, especially our neighbors whom we did not know but wish we had, if only for them to know that they are safe and accepted by us in all their glorious differences.
Tuesday, September 12, 2017
Educating the Critters on Girls! Girls! Girls!
Most recently, in addition to the more typical books on bodies and sex listed further on in the blog, I purchased one called S.E.X. - The All-You-Need-To-Know Sexuality Guide to Get You Through Your Teens and Twenties. Chapter 6 on how sexual entertainment media is not real and never has been was quite helpful in explaining WHY I didn't want them ogling parts on the internet.... Oh, and there's a great introduction for parents in the front, too. Helped me get past the too much information too soon worry.
This book is FAR more than the critters need as 5th and 7th graders. However, all the other books I could find failed to address an important concept - sexuality. Not just how it happens, when it should happen and respectful ways for it to happen, but the real formation of one's sexual self. I certainly do not want the critters to grow up ashamed of their bodies and sexuality, but I also don't want them to grow up feeling like it is simply fun without any need for great thought and reflection.
It seems that many peeps of my generation or older have a level of secrecy or shame or discomfort with who they are sexually. It also seems that many younger than myself have an openness and freedom in behavior, online and in person, that obscures the gravity of growing this part of ourselves in a healthy way and then sharing it with others.
So, I bought The Boy's Body Book and American Medical Association Boy's Guide to Becoming a Teen. I also bought the girl versions of these books for the boys. They're great basic books, but are just that, basic. They miss the decisions that start this early that form sexual health - the decision to google or not to google, the decision to text about sex or not, the decision to ask someone out just because your friends are doing it and on and on and on. They lack the words that tell our kids that they OWN their bodies and growing this in a safe and healthy way is THEIR responsibility. They certainly lack the words that show how this is done aside from abstinence vs. safe sex, it is a big gaping hole in sex ed across almost all sources.
These books weren't the start by any means. When my 3rd grader came home saying that a boy on the playground said that "girls like to lick dicks", I knew it was time to start talking about not just how the parts work, but also respect for others sexually. This goes waaaaaaay beyond "private parts are private" because well, as our kiddos reach adulthood, those private parts aren't so private anymore. They will likely choose to share their parts and want to have others share with them, too. All the positive body books in the world don't touch upon that at all, and the ones that do barely go beyond, "make sure you and your partner are ready" and then jump right in to the safe sex options. However, eons before our kiddos reach THAT point, their sexual self has started to form. Their sexual perceptions of others has started to form. I wanted to have THAT conversation with my boys. As a feminist, or at least that's what my house full of men tell me I am(hah!), I wanted to make SURE that they viewed females as sexual equals - not to be degraded or used or put on a pedestal. I wanted to make sure that CONSENT was not just something thought of legally or at the last minute, but that they understood it is a process. It is a process undertaken by responsible partners having adult-level conversations and requires deep communication and understanding of your partner. If you don't reflect and understand yourself sexually, how do you have any chance of TALKING to another about it? I know they'll be uncomfortable when they reach the sharing stage of their bodies, and that is a rite of passage I wouldn't take from them for all the world(first holding hands, first kiss, first sneaking the arm around the shoulder, first.....) but finding ways for them to reflect upon what they might want out of a romantic relationship as they grow seemed to be limited to mom talks. YUCK! They're both still pretty comfortable bringing any and all thoughts to mom for listening and discussion, but that is a'changing - as it should. No boy going through their sexual growth wants to talk to MOM about it. Ew Ew Ew
So, enter a book for older kiddos that helps them establish healthy concepts of sexual self. Oy...
FYI - think your kiddo isn't looking at "stuff", yet? Just ask them what an eggplant emoji means. If they giggle or panic, you're already behind talking about SEX and electronic communication.
Friday, August 11, 2017
Committing Hubris and Teacher Disposition
I follow a lot of educators. Having critters that are truly unique and challenging means keeping abreast of educational trends & regulations locally and nationwide. This means I have lots of knowledge about education and NO, ZERO, ZIPPO experience. I know, as a parent, we are the most important teachers our children will have. As true as that statement is, I will NEVER know what it is to juggle educating my child along with 30+ other unique kiddos across all subject matter or educate >150 kiddos across a single subject matter, all while managing meeting standards, curriculum, growth, enrichment, supports, and all those other words that seem mainstream, but have a much deeper and specific meaning in the educational world. So, I know that I am about to talk about something where my experience is only the breadth of the laser pinpoint that I am afforded as a parent of two children being educated. It is not that of an administrator or teacher in any way, shape or form, so forgive my hubris and if you are an educator, maybe read the post on perspective before you judge my perspective too harshly. As I've said to The Critter numerous times, perspective is like a cube, you cannot see a different perspective except as it is described to you by the person on the other side of the cube and you certainly cannot experience it.
This image was shared via Twitter by an educator in our district attending the annual leadership training where I am sure all the attendees heads were overfull of information each day. I, in my laser-width world of perspective, get to only think about THIS image and under context only of MY kids.
This image was shared via Twitter by an educator in our district attending the annual leadership training where I am sure all the attendees heads were overfull of information each day. I, in my laser-width world of perspective, get to only think about THIS image and under context only of MY kids.
As you can see, it is very simplistic and only diagrams academic press levels with personal warmth levels. If you google "Teacher Disposition", you will find MANY images of different traits postulating ideas on what makes a teacher great. I'm not doing that here; that is a topic for peeps with far broader experience in education than mine. This image did make me wonder, however, if there is a "type" based on these two traits that is preferred by each of my critters. The Critter tends to take an immediate like or dislike to others and while this has improved as he has matured, this image made me wonder if there was a correlation across those experiences and these traits and if so, could that affinity then be correlated to his personal strengths and weaknesses?
The answer was a resounding YES!! The Critter is not easy to get to know - his anxiety makes him hide who he is and mistrust. His high IQ has led to him not valuing others as a resource for valued information. His dysgraphia has led him to believe that people in authority cannot help him and that he, himself is useless. This is all improving, but is fairly accurate historically. So, what number type above leads to the most effective teaching for him? NUMBER 1!!!! Demanding a lot and supporting a lot emotionally as well. Hard to do with a kiddo who's cognition is several grades above and adaptive behavior(self care rating) is several grades below... A NUMBER 2 will lead to meltdowns as when he has a problem with the work(frequent due to dysgraphia), he will NOT be able to overcome the thought that the educator does not care and is not capable of helping him which forces engagement by a trusted adult to help solve those problems over and over throughout the year. NUMBER 3 creeps him out - too touchy feely, too interested in him without the intent of academics. NUMBER 4 he will simply ignore as he can wait them out and do what is EASY (and that sure as double hockey sticks is NOT schooling).
Now, Younger Critter....different profile and has had more success "schooling". His anxiety is almost always secondary to the ADHD. Manage the ADHD and you have low academic anxiety. Younger Critter's preference is NUMBER 3. He does not like to stretch himself academically - at all! NUMBER 1 would be survivable, but NUMBER 2 and NUMBER 4 mean tears.
This is horrible. Even with my hubris-filled perspective, there is something just wrong about breaking down teachers to a single number based on two traits. I'm sure there's value in it as it has clarified a few things that work and don't work for my two critters, but it just. feels. so. icky!! Every teacher the boys have had has are valuable to us - although some were the value of knowing what doesn't work Most gave us the values of growth, flexibility, social interaction, amazing coping and scaffolding ideas....I could go on and on.
I hope this image has been as intriguing for you as it has been for me, but then again, I overthink EVERYTHING (one of MY superpowers!), so maybe I should hope it's just a little less thought-provoking for you than for me. 😝
Wednesday, August 2, 2017
Person-Centered Profile Example
I edited the Person-Centered Profile for 8th grade this year. Remember to always get your kiddo's input in what should be there when possible. The image is hard to copy, so added a Google Drive link to the Word document, too.
I used the links at the end to create a person-centered profile for The Critter. After 3 days, he's been hanging tough, but this might help his team.
HELP! My alphabet is all mixed up!
This is not a post on dyslexia, which is often misinterpreted as mixed up letters, although if dyslexia is in your mix of alphabet letters that follow you or your family around, maybe you'll still find something valuable here.
I will often say "and whatever other alphabet letters follow him around" about The Critter or Younger Critter. These alphabet letters are, of course, the jargon we sped'ers must know and embrace to help our kiddos. Ours go something like this: HG/GAD/ASD/ADHD/LD-WE/SPD/mTBI in no particular order. (There's a list of these at the bottom with some interesting links) That is a looooong string of letters for any kiddo to be carrying around, let alone understand, accept and leverage in a world that can, at times, barely be accepting of even ONE of those. Some may say, well really the ASD encompasses all of that...and I might agree if you're reading the DSM-V or any other textbook, but that's not where we live. We live in a world that still forgets that not all ASD peeps are non-verbal and that even while we are (finally) starting to assume that SPD is a big hurdle for ASD peeps, we forget that HG peeps are also more likely than not to have SPD. Oh, and do NOT get me started on trying to accurately diagnose all of these alphabet letters when there are no medical diagnostic tests for them! THAT is a completely different post that may never be written and only the march of time and medical progress will sort out.
I suppose this post is more about our need to "sort" even a single critter into each separate bucket of alphabet letters. Oh, The Critter told a joke to the class after the teacher told him not to, that must be behavioral. Oh, The Critter wasn't able to work in class today, that must be behavioral. Oh, The Critter wasn't able to do warm-ups in PE today, that must be behavioral. Every time I get a call, email, text on something The Critter or Younger Critter wasn't able to do, I feel like I need to know WHY and not just why like neurotypical parents know why, but the specific trigger and what we missed in the framework of supports/accommodations/rewards/consequences/etc. that could have presented it. I find myself putting on my kaleidoscope viewer of all these alphabet letters jumbled together and trying desperately to twist and turn the event and perspectives in my mind so that it can be seen through a single color in that kaleidoscope, a single set of alphabet letters and then placed in a neat little bucket in the row of buckets. Despite those efforts and time spent on those efforts(less time now than in the past), life simply doesn't work that way. Not only does life not work that way, it doesn't work that way for ANYONE - not even those without these fun letters following them around. I can't for a minute say that The Critter told that joke because he is a typical 7th grader or because the asynchronous development from the HG makes him socially awkward or because when the teacher said NO, his ADHD prevented that information from getting to his brain and stopping him. I can't say that his inability to do work in a class was the anxiety or the dysgraphia or that he didn't see value in the work because the HG makes so much grade level work excruciatingly boring. I can't say that he couldn't do warm-ups in PE because they made his vestibular and proprioceptive senses go bonkers...Even if I TALK TALK TALK to The Critter to help me twist and turn that kaleidoscope to just the right set of alphabet letters(which he loves about as much as any 7th grader), I often simply end up admitting defeat at determining exactly WHY and even whether a behavior is common or not among boys his age. I admit defeat and concede the win to his letters. However, admitting defeat in one battle can often allow us to focus on the areas that really matter. So finally, after all of that searching through the kaleidoscope, I put it down and simply go back to knowing that behavior is communication.
Once the kaleidoscope is down, I can see The Critter just as he is far better. While we may all know that you must love the person in front of you, not the person you want them to be, it is so HARD as a parent, let alone when all those damn, bouncy alphabet letters keep moving around between you and them. I am simultaneously advocate, therapist, parent and ally. Once I see The Critter just as he is, those incidents of misbehavior can be handled better. I can advocate for tweaking accommodations. I can parent through rewards and consequences. I can listen to him rage about why doing the work, doing warm-ups and not telling the jokes are so hard as his ally and then hug him. I can ask him for ways he can overcome these hurdles and advise him and teach him as his therapist. Hopefully, after all those hats get cycled through, I can help him put down his own kaleidoscope of his alphabet letters and teach him to love and embrace who he is, in all its intensity, magnificence and magic, so he may one day share it instead of hide it. It will be a long road, but it certainly will not be boring.
Here's the list of acronyms mentioned and maybe a few more for good measure:
HG - Highly Gifted
PG - Profoundly Gifted
GAD - Generalized Anxiety Disorder(social/situational/everything causes anxiety)
ASD - Autism Spectrum Disorder (a constellation disorder)
ADHD- Attention Deficit Hyperactivity(maybe) Disorder
LD-WE - Learning Disability of Written Expression (in our case Working Memory subtype of dysgraphia, which is a LOT more than just handwriting) www.handwriting-solutions.com
SPD - Sensory Processing Disorder (at LEAST 8 senses and peeps can be hyper or hypo responsive and then either be seeking or avoiding for each one) www.sensory-processing-disorder.com is a great starting point and This is Gabriel is a great kid's book
vestibular sense - sense of balance and motion
proprioceptive sense - sense of where you are in space and relational to other objects
interoceptive sense - sense of internal body needs - hunger, too hot, too cold, need to pee or poop
DSM-V - Diagnostic Schedule of Medicine release 5 https://www.psychologytoday.com/blog/side-effects/201305/the-nimh-withdraws-support-dsm-5
VPD - Visual Processing Disorder (diagnosed by a developmental optometrist) www.covd.org
APD - Auditory Processing Disorder (diagnosed by a developmental audiologist)
mTBI - minor Traumatic Brain Injury aka at least a concussion (TWO of these are in The Critter's past, one far more severe than the other and not handled well at the time - preceded the need to go searching for alphabet letters) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3208826/
PCS - Post Concussive Syndrome (lasting effects of multiple areas of behavior and cognition after a concussion even if no impact is seen via MRI)
PANS - Pediatric Acute-onset Neuropsychiatric Syndrome
PANDAS - Same as PANS but specifically related to Strep infections http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/
Dr. Selz looks at what I have been calling the alphabet as a pie chart. Here's his great post on this:
http://shutdownlearner.com/whats-in-your-childs-pie-chart/
I will often say "and whatever other alphabet letters follow him around" about The Critter or Younger Critter. These alphabet letters are, of course, the jargon we sped'ers must know and embrace to help our kiddos. Ours go something like this: HG/GAD/ASD/ADHD/LD-WE/SPD/mTBI in no particular order. (There's a list of these at the bottom with some interesting links) That is a looooong string of letters for any kiddo to be carrying around, let alone understand, accept and leverage in a world that can, at times, barely be accepting of even ONE of those. Some may say, well really the ASD encompasses all of that...and I might agree if you're reading the DSM-V or any other textbook, but that's not where we live. We live in a world that still forgets that not all ASD peeps are non-verbal and that even while we are (finally) starting to assume that SPD is a big hurdle for ASD peeps, we forget that HG peeps are also more likely than not to have SPD. Oh, and do NOT get me started on trying to accurately diagnose all of these alphabet letters when there are no medical diagnostic tests for them! THAT is a completely different post that may never be written and only the march of time and medical progress will sort out.
I suppose this post is more about our need to "sort" even a single critter into each separate bucket of alphabet letters. Oh, The Critter told a joke to the class after the teacher told him not to, that must be behavioral. Oh, The Critter wasn't able to work in class today, that must be behavioral. Oh, The Critter wasn't able to do warm-ups in PE today, that must be behavioral. Every time I get a call, email, text on something The Critter or Younger Critter wasn't able to do, I feel like I need to know WHY and not just why like neurotypical parents know why, but the specific trigger and what we missed in the framework of supports/accommodations/rewards/consequences/etc. that could have presented it. I find myself putting on my kaleidoscope viewer of all these alphabet letters jumbled together and trying desperately to twist and turn the event and perspectives in my mind so that it can be seen through a single color in that kaleidoscope, a single set of alphabet letters and then placed in a neat little bucket in the row of buckets. Despite those efforts and time spent on those efforts(less time now than in the past), life simply doesn't work that way. Not only does life not work that way, it doesn't work that way for ANYONE - not even those without these fun letters following them around. I can't for a minute say that The Critter told that joke because he is a typical 7th grader or because the asynchronous development from the HG makes him socially awkward or because when the teacher said NO, his ADHD prevented that information from getting to his brain and stopping him. I can't say that his inability to do work in a class was the anxiety or the dysgraphia or that he didn't see value in the work because the HG makes so much grade level work excruciatingly boring. I can't say that he couldn't do warm-ups in PE because they made his vestibular and proprioceptive senses go bonkers...Even if I TALK TALK TALK to The Critter to help me twist and turn that kaleidoscope to just the right set of alphabet letters(which he loves about as much as any 7th grader), I often simply end up admitting defeat at determining exactly WHY and even whether a behavior is common or not among boys his age. I admit defeat and concede the win to his letters. However, admitting defeat in one battle can often allow us to focus on the areas that really matter. So finally, after all of that searching through the kaleidoscope, I put it down and simply go back to knowing that behavior is communication.
Once the kaleidoscope is down, I can see The Critter just as he is far better. While we may all know that you must love the person in front of you, not the person you want them to be, it is so HARD as a parent, let alone when all those damn, bouncy alphabet letters keep moving around between you and them. I am simultaneously advocate, therapist, parent and ally. Once I see The Critter just as he is, those incidents of misbehavior can be handled better. I can advocate for tweaking accommodations. I can parent through rewards and consequences. I can listen to him rage about why doing the work, doing warm-ups and not telling the jokes are so hard as his ally and then hug him. I can ask him for ways he can overcome these hurdles and advise him and teach him as his therapist. Hopefully, after all those hats get cycled through, I can help him put down his own kaleidoscope of his alphabet letters and teach him to love and embrace who he is, in all its intensity, magnificence and magic, so he may one day share it instead of hide it. It will be a long road, but it certainly will not be boring.
Here's the list of acronyms mentioned and maybe a few more for good measure:
HG - Highly Gifted
PG - Profoundly Gifted
GAD - Generalized Anxiety Disorder(social/situational/everything causes anxiety)
ASD - Autism Spectrum Disorder (a constellation disorder)
ADHD- Attention Deficit Hyperactivity(maybe) Disorder
LD-WE - Learning Disability of Written Expression (in our case Working Memory subtype of dysgraphia, which is a LOT more than just handwriting) www.handwriting-solutions.com
SPD - Sensory Processing Disorder (at LEAST 8 senses and peeps can be hyper or hypo responsive and then either be seeking or avoiding for each one) www.sensory-processing-disorder.com is a great starting point and This is Gabriel is a great kid's book
vestibular sense - sense of balance and motion
proprioceptive sense - sense of where you are in space and relational to other objects
interoceptive sense - sense of internal body needs - hunger, too hot, too cold, need to pee or poop
DSM-V - Diagnostic Schedule of Medicine release 5 https://www.psychologytoday.com/blog/side-effects/201305/the-nimh-withdraws-support-dsm-5
VPD - Visual Processing Disorder (diagnosed by a developmental optometrist) www.covd.org
APD - Auditory Processing Disorder (diagnosed by a developmental audiologist)
mTBI - minor Traumatic Brain Injury aka at least a concussion (TWO of these are in The Critter's past, one far more severe than the other and not handled well at the time - preceded the need to go searching for alphabet letters) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3208826/
PCS - Post Concussive Syndrome (lasting effects of multiple areas of behavior and cognition after a concussion even if no impact is seen via MRI)
PANS - Pediatric Acute-onset Neuropsychiatric Syndrome
PANDAS - Same as PANS but specifically related to Strep infections http://www.pandasnetwork.org/understanding-pandaspans/what-is-pans/
Dr. Selz looks at what I have been calling the alphabet as a pie chart. Here's his great post on this:
http://shutdownlearner.com/whats-in-your-childs-pie-chart/
Monday, July 31, 2017
School Year - Day 1 Extreme Teaching
Both Critters returned to school today. We now have a 5th grader and a 7th grader.
No school changes; no change in the peer mix; zippo. For the first time since 1st grade, I did not prepare a "cheat sheet" or "get to know" sheet on either kiddo, and now I'm worried it was a mistake. I relied on last year's teachers and case managers to have it together and handle the transfer independent of me for the first time ever. I suppose that is a testament to how well last year went for both Critters. There were major hurdles - flipping the AP the bird, watching a teacher get his nose broken, not being able to take tests, etc. but the staff handled each hurdle really well once they found their bearings. I know this sounds pretentious, but I am SO proud of them - the staff, that is. Being proud of the kiddos is assumed. I can only imagine the tenacity it must take to keep at exceptional, challenging kiddos like ours with kindness every day not really knowing if it is working, if you're making a difference, if it really is the right approach. I, of course, have to keep at it too, but it's different. I have the luxury of more time and fewer "show me" type demands. I have the luxury of allowing my kiddo to get angry at a demand without impacting anyone but us. I have the luxury of pushing them so far that they shutdown just so that they can learn to recover from that. I have the luxury of knowing exactly what to take away or present as a reward to get the desired outcome. I definitely have the luxury of being able to let them yell, scream and hate me for a little while as intensely as they can. I have the luxury of waiting and letting all of that emotional intensity burn out to then have a conversation about WHY and whether they got the outcome they wanted by giving in to all that emotional intensity afterwards. Teachers simply don't. By middle school, they have 40"/day to teach teach teach, and we expect them to do it perfectly. We expect them to do it perfectly for each and every child - even the ones that are in the 99.95% and the 0.05% simultaneously like mine. What's worse, they often expect this of themselves. From day 1, they are trying to cram in SEL, collaboration, curriculum, standards, presentation, self knowledge, peer relations, organization, etc. into our kiddos as best they can. Oh, and they do this at a salary that would prevent many of us from having the lifestyles we have and with hours that would prevent us the luxury of time with our kiddos.
Wow, this post was not intended to be a diatribe on the amazing and impossible job teachers have, but there it is.
I know that as sped parents, teachers are often a good fit or a bad fit for our exceptional kiddos, but after a couple years of being deep in the weeds and now a couple years of having staff REALLY step up, my perspective is that we need to give them a break. Hell, not even that, we need to give them a hand. I may not be able to make up for the pay disparity of what is vs. what should be or buy enough of the stuff that they should have but don't or even show up to volunteer as much as I'd like, but I will always help them as best as I can, even if sometimes that means trying to help them see an extreme parent's perspective. The hand I extend may not always be appreciated as it may come in emailing a post about IDEA or about SRO MOUs or sometimes a false assumption about WHY The Critter or Younger Critter are exhibiting a behavior that needs to be eliminated, but sometimes it comes in a load of wipeboards or dry erasers or owl pellets or in creative problem solving ideas that may or may not work in a school environment. We, as parents, often force teachers into a mentality of us and them without meaning to, just as a result of everyone trying to get the best education for our children and not always knowing how to do that. I may not always hit the mark in helping with that, but my attempts will always come with deep appreciation, gratitude and challenges to all of us to be better.
No school changes; no change in the peer mix; zippo. For the first time since 1st grade, I did not prepare a "cheat sheet" or "get to know" sheet on either kiddo, and now I'm worried it was a mistake. I relied on last year's teachers and case managers to have it together and handle the transfer independent of me for the first time ever. I suppose that is a testament to how well last year went for both Critters. There were major hurdles - flipping the AP the bird, watching a teacher get his nose broken, not being able to take tests, etc. but the staff handled each hurdle really well once they found their bearings. I know this sounds pretentious, but I am SO proud of them - the staff, that is. Being proud of the kiddos is assumed. I can only imagine the tenacity it must take to keep at exceptional, challenging kiddos like ours with kindness every day not really knowing if it is working, if you're making a difference, if it really is the right approach. I, of course, have to keep at it too, but it's different. I have the luxury of more time and fewer "show me" type demands. I have the luxury of allowing my kiddo to get angry at a demand without impacting anyone but us. I have the luxury of pushing them so far that they shutdown just so that they can learn to recover from that. I have the luxury of knowing exactly what to take away or present as a reward to get the desired outcome. I definitely have the luxury of being able to let them yell, scream and hate me for a little while as intensely as they can. I have the luxury of waiting and letting all of that emotional intensity burn out to then have a conversation about WHY and whether they got the outcome they wanted by giving in to all that emotional intensity afterwards. Teachers simply don't. By middle school, they have 40"/day to teach teach teach, and we expect them to do it perfectly. We expect them to do it perfectly for each and every child - even the ones that are in the 99.95% and the 0.05% simultaneously like mine. What's worse, they often expect this of themselves. From day 1, they are trying to cram in SEL, collaboration, curriculum, standards, presentation, self knowledge, peer relations, organization, etc. into our kiddos as best they can. Oh, and they do this at a salary that would prevent many of us from having the lifestyles we have and with hours that would prevent us the luxury of time with our kiddos.
Wow, this post was not intended to be a diatribe on the amazing and impossible job teachers have, but there it is.
I know that as sped parents, teachers are often a good fit or a bad fit for our exceptional kiddos, but after a couple years of being deep in the weeds and now a couple years of having staff REALLY step up, my perspective is that we need to give them a break. Hell, not even that, we need to give them a hand. I may not be able to make up for the pay disparity of what is vs. what should be or buy enough of the stuff that they should have but don't or even show up to volunteer as much as I'd like, but I will always help them as best as I can, even if sometimes that means trying to help them see an extreme parent's perspective. The hand I extend may not always be appreciated as it may come in emailing a post about IDEA or about SRO MOUs or sometimes a false assumption about WHY The Critter or Younger Critter are exhibiting a behavior that needs to be eliminated, but sometimes it comes in a load of wipeboards or dry erasers or owl pellets or in creative problem solving ideas that may or may not work in a school environment. We, as parents, often force teachers into a mentality of us and them without meaning to, just as a result of everyone trying to get the best education for our children and not always knowing how to do that. I may not always hit the mark in helping with that, but my attempts will always come with deep appreciation, gratitude and challenges to all of us to be better.
Wednesday, July 26, 2017
Camp - Expelled
....BOOM! There's that shoe!!
I'm mixed about this one and may never actually post it to the wide world. The Critter was expelled from a camp today. He became VERY agitated and upset with another boy and pushed him up against the wall. Apparently, there was a lot of yelling that did not decrease when a teacher tried to intervene and say, "Hey, he's smaller than you. You can't do that to him."
Thankfully, the administrators of this camp GET IT. They know the difference between a panic response and a decision to hurt another camper in the Otherly Wired. They gave him space and time to breathe and calm down before I even arrived to get him. Unfortunately, after speaking with the other boy's parent, they opted to expel The Critter from attending that camp. I am grateful that he will continue to be allowed to attend the afternoon camp.
So, here's where I get mixed feelings. I am outraged that The Critter tried to hurt another child, especially one that is smaller. However, this didn't happen in a bell jar. The Critter didn't just get upset about the other team cheating and target one of them.
This is Chess camp, so my mistake in this is two-fold. First, I expected that they would be playing Chess and be indoors for the entirety of the camp. Second, since The Critter was on his phone too much the day before, I took it away, and he did not have it at camp. Neurotypical parents can stop reading here because already, the neurotypical parent voice in my head is saying, "huh? Why is that a big deal?" Some extreme parents may automatically understand these two sentences being HUGE deals, but I'll explain since everyone's flavor of extreme is a little different. HEAT for hyper-responsive sensory avoiders can be a really unsafe thing. A neurotypical's body starts sweating and they may get irritated because they are hot - these are warnings by our body to change our behavior and get cooler. In a hyper-responsive avoider, these responses are waaaaay outsized and the response to them is also waaaaaay outsized. Hence, why ASS-U-M(E)ing that Chess would be a completely indoor camp is a huge deal. Now, for the phone thing. So, for avoiders, small screens can be a GREAT way for them to disconnect from the barrage of sensory and social stimuli for a while to discharge and then re-enter their day. It can also be an addiction, but that's for another post. So, taking The Critter's phone away meant that he did not have this disconnect(which I knew and we discussed other coping mechanisms) and that he did not get on his phone during an outdoor snack break activity. The outdoor snack break activity was Capture the Flag in the sun, while it was over 90deg outside AND the kids were tackling, shoving, etc. Also, REALLY big deals for a hyper-responsive avoider. For most kids, the sudden shove by a playmate is accepted and does not feel unsafe to them or their body. In a hyper-responsive, the unexpected touch registers more like being stabbed to the brain's sensory system and can send some into an immediate fight/flight/freeze panic response. The Critter used to do this, especially in the heat, hence why there are NO outdoor camps on our possibles list in the summer. Now that he's older, his response is more of a slow burn, but you can see it increasing if the hits keep coming.
So, Capture the Flag with tackling and shoving in 90degree sun ensues.....and then the opposing team cheats. The Critter STILL held it together except for some yelling, which is pretty neurotypical for any 12yr old kiddo. Then, the other kiddo started calling him names, Stupid, Blind, Idiot and a few others.... So, as is typical of 12yr old boys, The Critter increased the intensity of the exchange by going to swearing. Have I mentioned that this camp is at a CHURCH school?!?!? So, the other kiddo continued to increase intensity by poking The Critter in. the. face. That was it...The Critter backed him up against a wall and had his hands on the collarbone. (Yes, that horrifies me) He let him go right away and walked off to calm down. The other kiddo was laughing about it, even after being backed up to a wall. I confirmed that he is fine this morning; no damage or trauma about it. If The Critter hadn't been outdoors, this would not have happened. If I had let him have his phone instead of expecting other coping mechanisms, he wouldn't have played a physical sport in the sun, and this wouldn't have happened.
Clearly, this is a learning opportunity for all of us. So, The Critter is home today, and I have ANOTHER unexpected work from home day. He will still go to the afternoon camp, and I am very grateful that the director did not see fit to expel him completely. ....and he'll go with his phone....which will be the ONLY time he will be allowed any media of any kind until I feel he is sufficiently regulated.
Now, to look up an Anger Management course that helps people stop that fight/flight/freeze response and recognize when it is coming....
I'm mixed about this one and may never actually post it to the wide world. The Critter was expelled from a camp today. He became VERY agitated and upset with another boy and pushed him up against the wall. Apparently, there was a lot of yelling that did not decrease when a teacher tried to intervene and say, "Hey, he's smaller than you. You can't do that to him."
Thankfully, the administrators of this camp GET IT. They know the difference between a panic response and a decision to hurt another camper in the Otherly Wired. They gave him space and time to breathe and calm down before I even arrived to get him. Unfortunately, after speaking with the other boy's parent, they opted to expel The Critter from attending that camp. I am grateful that he will continue to be allowed to attend the afternoon camp.
So, here's where I get mixed feelings. I am outraged that The Critter tried to hurt another child, especially one that is smaller. However, this didn't happen in a bell jar. The Critter didn't just get upset about the other team cheating and target one of them.
This is Chess camp, so my mistake in this is two-fold. First, I expected that they would be playing Chess and be indoors for the entirety of the camp. Second, since The Critter was on his phone too much the day before, I took it away, and he did not have it at camp. Neurotypical parents can stop reading here because already, the neurotypical parent voice in my head is saying, "huh? Why is that a big deal?" Some extreme parents may automatically understand these two sentences being HUGE deals, but I'll explain since everyone's flavor of extreme is a little different. HEAT for hyper-responsive sensory avoiders can be a really unsafe thing. A neurotypical's body starts sweating and they may get irritated because they are hot - these are warnings by our body to change our behavior and get cooler. In a hyper-responsive avoider, these responses are waaaaay outsized and the response to them is also waaaaaay outsized. Hence, why ASS-U-M(E)ing that Chess would be a completely indoor camp is a huge deal. Now, for the phone thing. So, for avoiders, small screens can be a GREAT way for them to disconnect from the barrage of sensory and social stimuli for a while to discharge and then re-enter their day. It can also be an addiction, but that's for another post. So, taking The Critter's phone away meant that he did not have this disconnect(which I knew and we discussed other coping mechanisms) and that he did not get on his phone during an outdoor snack break activity. The outdoor snack break activity was Capture the Flag in the sun, while it was over 90deg outside AND the kids were tackling, shoving, etc. Also, REALLY big deals for a hyper-responsive avoider. For most kids, the sudden shove by a playmate is accepted and does not feel unsafe to them or their body. In a hyper-responsive, the unexpected touch registers more like being stabbed to the brain's sensory system and can send some into an immediate fight/flight/freeze panic response. The Critter used to do this, especially in the heat, hence why there are NO outdoor camps on our possibles list in the summer. Now that he's older, his response is more of a slow burn, but you can see it increasing if the hits keep coming.
So, Capture the Flag with tackling and shoving in 90degree sun ensues.....and then the opposing team cheats. The Critter STILL held it together except for some yelling, which is pretty neurotypical for any 12yr old kiddo. Then, the other kiddo started calling him names, Stupid, Blind, Idiot and a few others.... So, as is typical of 12yr old boys, The Critter increased the intensity of the exchange by going to swearing. Have I mentioned that this camp is at a CHURCH school?!?!? So, the other kiddo continued to increase intensity by poking The Critter in. the. face. That was it...The Critter backed him up against a wall and had his hands on the collarbone. (Yes, that horrifies me) He let him go right away and walked off to calm down. The other kiddo was laughing about it, even after being backed up to a wall. I confirmed that he is fine this morning; no damage or trauma about it. If The Critter hadn't been outdoors, this would not have happened. If I had let him have his phone instead of expecting other coping mechanisms, he wouldn't have played a physical sport in the sun, and this wouldn't have happened.
Clearly, this is a learning opportunity for all of us. So, The Critter is home today, and I have ANOTHER unexpected work from home day. He will still go to the afternoon camp, and I am very grateful that the director did not see fit to expel him completely. ....and he'll go with his phone....which will be the ONLY time he will be allowed any media of any kind until I feel he is sufficiently regulated.
Now, to look up an Anger Management course that helps people stop that fight/flight/freeze response and recognize when it is coming....
Wednesday, July 19, 2017
Patience and ADHD coexisting in harmony?
Reading through the previous posts may have imparted a feeling of the ambivalent nature of our 2E Critter. I want to be clear about ambivalence. It is not apathy, it is the opposite, but in 2 directions at once. It is intense feeling or an intense nature of opposites simultaneously. I think the most common feeling of intense ambivalence we as parents feel is as our kiddos grow up. We are simultaneously overjoyed to see them accomplish and grow but despondent to know we are losing who they were before. I miss my 2yr old critters terribly, but am intensely excited to know them now. 2E kiddos are ALWAYS on the two extremes of competence, and this is very clear for The Critter.
Yesterday, Younger Critter said something that rocked my world a bit. He said that he wins at chess more frequently than his peers because he is patient and waits for their mistakes. THAT was a word I NEVER thought I'd apply to Younger Critter. After going down what we thought was a clear anxiety pathway for him, too, we hit a wall with interventions and went back to square one and then added an ADHD stimulant med. It's a super low dosage, but OMG! No more pulling out the hair; no more test anxiety; no more handwriting avoidance! Day 2 he said, "I feel like me but now in control of me"! His exact words, so forgive the poor grammar. While it did indeed feel like magic, we still saw lots of rebound in the evenings and mornings until it kicked in and very little patience....for anything! So, to hear him state that he uses patience as a strategy tool was kind of amazing.
The dichotomy of ADHD and patience in the same body for Younger Critter has me thinking what other hidden talents might be masked by his constant need to move and get input? What other areas that could have been contributing to confidence and self knowledge have been obscured by that need for far too long?
Yesterday, Younger Critter said something that rocked my world a bit. He said that he wins at chess more frequently than his peers because he is patient and waits for their mistakes. THAT was a word I NEVER thought I'd apply to Younger Critter. After going down what we thought was a clear anxiety pathway for him, too, we hit a wall with interventions and went back to square one and then added an ADHD stimulant med. It's a super low dosage, but OMG! No more pulling out the hair; no more test anxiety; no more handwriting avoidance! Day 2 he said, "I feel like me but now in control of me"! His exact words, so forgive the poor grammar. While it did indeed feel like magic, we still saw lots of rebound in the evenings and mornings until it kicked in and very little patience....for anything! So, to hear him state that he uses patience as a strategy tool was kind of amazing.
The dichotomy of ADHD and patience in the same body for Younger Critter has me thinking what other hidden talents might be masked by his constant need to move and get input? What other areas that could have been contributing to confidence and self knowledge have been obscured by that need for far too long?
Thursday, July 13, 2017
Perspective
Another oldie but a goodie that I thought I'd copy over here:
I think it would be nice if we could all understand that what we see in another's behavior is just a single pixel of the picture, viewed through our own kaleidoscope of perception and circumstance. I think if we can understand that, then we can truly approach each other in the spirit of collaboration and empathy instead of accusation and fear. Now, just think if we could grant ourselves that same benefit when looking within as well. :)
I think it would be nice if we could all understand that what we see in another's behavior is just a single pixel of the picture, viewed through our own kaleidoscope of perception and circumstance. I think if we can understand that, then we can truly approach each other in the spirit of collaboration and empathy instead of accusation and fear. Now, just think if we could grant ourselves that same benefit when looking within as well. :)
Maple Syrup Parenting
Wrote this as a post in the Triangle SPD Support Group fb page a few years back. Since I just referenced in the last post about camp, thought I'd better paste it here, too.
In the midst of what sometimes seems like a chronic battle over how to appropriately parent our kiddos with my husband last night, I said to him, "I go to sleep and I get up and do it again, hopefully a little better. If I suck at it, I just keep trying and moving forward day by day, inch by inch." Raising kids is a marathon and raising special kids is like a marathon with the kids on piggy-back on maple syrup -sticky and slippery at the same time. We fall and we get back up. Some days we're running in place and other days we're sliding forward so fast, we have to adjust. Keep at it; you're doing a great job!*
Camp Completed
The Critter completed camp on Friday, and we hit the road back to NC.
This camp, Landmark College ELO-STEM for middle schoolers, definitely goes in the Good Camp pile, maybe even the first in a GREAT camp pile, and yet, I can't feel quite satisfied and content to leave it there....
The hydra-headed WHY????? always rears its head, even when things go really well for us SpEd parents. WHY was this camp different? WHY was The Critter able to self-regulate without issue at this camp? WHY was The Critter able to relate to the kids? WHY was The Critter able to identify early on which kids he would "hang" with and which ones he wouldn't? WHY is/has this experience so different than other group experiences?
Then, of course, the plethora of possible answers:
So, while that cognitive wall of how to magically transport this experience to the grind and loaded environment of school is still there, I know that I am not alone in being frustrated by it. I know that it is not my wall to break down - at least not today. That is the crux of maple syrup parenting (I'll attach that early thought from several years ago later today) when you don't know if you are going to have to slog through or slip by too fast.
This camp, Landmark College ELO-STEM for middle schoolers, definitely goes in the Good Camp pile, maybe even the first in a GREAT camp pile, and yet, I can't feel quite satisfied and content to leave it there....
The hydra-headed WHY????? always rears its head, even when things go really well for us SpEd parents. WHY was this camp different? WHY was The Critter able to self-regulate without issue at this camp? WHY was The Critter able to relate to the kids? WHY was The Critter able to identify early on which kids he would "hang" with and which ones he wouldn't? WHY is/has this experience so different than other group experiences?
Then, of course, the plethora of possible answers:
- He's more mature
- The other kids are more similar
- The entire group is more accepting and therefore safer
- His meds are just right
- It was just he and I so the routine was VERY consistent and not a group dynamic
- No school so few demands
- No writing, by hand or otherwise, so no gap between output ability and knowledge due to the dysgraphia
- HIGHLY trained staff who read subtle signs and head them off early
- Few demands to "school" in a traditional way
- The Critter felt safe from the start because of the camp intent and was more relaxed, trusting that it would be a good experience.
- Highly trained staff are not thrown off by odd behaviors, sensory issues, etc.
So, while that cognitive wall of how to magically transport this experience to the grind and loaded environment of school is still there, I know that I am not alone in being frustrated by it. I know that it is not my wall to break down - at least not today. That is the crux of maple syrup parenting (I'll attach that early thought from several years ago later today) when you don't know if you are going to have to slog through or slip by too fast.
Friday, July 7, 2017
Camp Day 4 and Striving for Average
Camp Day 4 was uneventful, which if you are the parent of an intense kiddo is success at its best.
The Critter told his therapist a while back that he wants to be average. He doesn't want to know SO much more than his peers or know or be able to do things less or differently than his peers. He wants desperately to feel average at school, which on its face sounds terrible for a kiddo with an IQ way above norm, right? At first, that news made me very sad, and I may or may not be shedding a tear about it still even now. However, isn't that what we want for him, too? For a kiddo who waaaaay too frequently feels like everyone around him is stupid AND feels that he himself is useless simultaneously, maybe average instead of those two extremes that tear him apart is a good goal.
Maybe figuring out how to wear his "I AM just like you" costume instead of feeling like an alien is a good thing at his age. I'd like to think that he would feel safe sharing exactly who he is with everyone and telling those that don't like it to fuck off, BUT then I remember that friendships formed in middle school don't last more than a year usually anyway, so figuring out how to function in the world that IS might be a good tradeoff to trying to find his tribe at this age.
Many kiddos learn how to navigate the back and forth of social norms early - think of 2-3 yr olds in a sandbox. They share, they build a structure together that they have figured out what to build almost seamlessly with minimal language. This is shared imagination play. For a kiddo who is talking about paleontology and various theories on evolution at 3 peppered with Roman Aqueduct architecture, there is no opportunity for shared imagination with peers. That seamless social melding with others almost never occurred outside the home for The Critter.
A place to be and feel average like everyone else is a pretty good thing and can help The Critter gain confidence in himself and feel emotionally safe around peers - finally. While I'm not hoping that he will magically turn in to a typical middle schooler who tells me NOTHING and is constantly texting, having him feel what it is like in the "fun zone" as he likes to call average, is definitely a welcome change and something he can carry with him.
What's that stupid, sappy song from some stupid, sappy musical??/ "Somewhere there's a place for us"...
ARGH! I looked it up! West Side Story Natalie Wood Death Robert Wagner NCIS Hart to Hart......make the brain stop!!!
Sorry, it runs away sometimes and yes, The Critter comes by his intensity honestly.
Anyway, a place where 2E kiddos can realize that they are "average" somewhere is definitely a good thing and Landmark College ELO-STEM seems to afford that opportunity.
The Critter told his therapist a while back that he wants to be average. He doesn't want to know SO much more than his peers or know or be able to do things less or differently than his peers. He wants desperately to feel average at school, which on its face sounds terrible for a kiddo with an IQ way above norm, right? At first, that news made me very sad, and I may or may not be shedding a tear about it still even now. However, isn't that what we want for him, too? For a kiddo who waaaaay too frequently feels like everyone around him is stupid AND feels that he himself is useless simultaneously, maybe average instead of those two extremes that tear him apart is a good goal.
Maybe figuring out how to wear his "I AM just like you" costume instead of feeling like an alien is a good thing at his age. I'd like to think that he would feel safe sharing exactly who he is with everyone and telling those that don't like it to fuck off, BUT then I remember that friendships formed in middle school don't last more than a year usually anyway, so figuring out how to function in the world that IS might be a good tradeoff to trying to find his tribe at this age.
Many kiddos learn how to navigate the back and forth of social norms early - think of 2-3 yr olds in a sandbox. They share, they build a structure together that they have figured out what to build almost seamlessly with minimal language. This is shared imagination play. For a kiddo who is talking about paleontology and various theories on evolution at 3 peppered with Roman Aqueduct architecture, there is no opportunity for shared imagination with peers. That seamless social melding with others almost never occurred outside the home for The Critter.
A place to be and feel average like everyone else is a pretty good thing and can help The Critter gain confidence in himself and feel emotionally safe around peers - finally. While I'm not hoping that he will magically turn in to a typical middle schooler who tells me NOTHING and is constantly texting, having him feel what it is like in the "fun zone" as he likes to call average, is definitely a welcome change and something he can carry with him.
What's that stupid, sappy song from some stupid, sappy musical??/ "Somewhere there's a place for us"...
ARGH! I looked it up! West Side Story Natalie Wood Death Robert Wagner NCIS Hart to Hart......make the brain stop!!!
Sorry, it runs away sometimes and yes, The Critter comes by his intensity honestly.
Anyway, a place where 2E kiddos can realize that they are "average" somewhere is definitely a good thing and Landmark College ELO-STEM seems to afford that opportunity.
Thursday, July 6, 2017
Camp Day 3 - Size of the Problem
The Critter completed Day 3 of camp yesterday. It involved an injured bird, loss of virtual reality privileges and hate speech, which apparently is all pretty typical middle school boy stuff, particularly the hate speech these days. So, interesting tidbit - while VT is very liberal and open and welcoming, almost everyone here looks a lot the same, at least in the two towns we've frequented thus far. This means that when The Critter came home yesterday and told me about how one of the kids went off on a rant about minorities that included all the differences possible, I was a little surprised thinking we were seeing that uptick only in areas that were not bastions of liberal thought and appreciation for differences. I should not have been surprised though, I guess.
If you also have a kiddo who chomps down historical political cartoons, historical documentaries, listens to NPR for fun, you may have also needed to have a talk with them about how to disagree about heated politics and even revisionist history lately. Since this was not our first rodeo with The Critter being intolerant of intolerance, we were able to simply review the steps to avoid reaching a point where he really just wants to hit someone. Mind you, violence is never the answer, but these are middle school boys, and scuffles can come with the territory despite our enlightened times.
Step One - ADMIT that the Size of the Problem(THANK YOU to Social Thinking curriculum https://www.facebook.com/socialthinking/videos/10153385670211441/) when encountering dumbass hate speech is bigger than just YOU This has been the place where The Critter tends to get stuck as he feels like his knowledge and intellect should be able to forcibly persuade the other person or persons to see the error in their way of thinking and just say, "Wow! You're right! The information and emotions towards minorities I've been given in this life thus far is just wrong, and I suddenly feel a kinship with everyone." You can see how this thought process is likely an error for anyone, let alone a 12yr old
Step Two(assumes The Critter is successful with Step One, which has yet to occur) - Find an adult whom you believe will agree with you. This should be super easy here in VT and still easy in our public school and yet..... If you cannot see an adult you trust with this, go find your case manager - now! This is to prevent the emotional reaction to the dumbass hate speech from getting the better of The Critter.
Step Three - In the future, discuss 12yr old topics like videogames or football teams or math homework and NOT global historical politics and our roles in fostering equity with these kids
It's pretty understandable how the injured bird and loss of privileges due to obscene drawings and swearing by The Critter and others got second billing on Day 3....
It is days like this that make me wonder...
Is it really The Critter that is emotionally behind or is it all the other 12yr olds?? Certainly, he is behind his cognitive ability, but is "joining or ignoring" stuff like this really an approach I want to foster just so this exceptional critter isn't the exception in the FU world of 12yr old boys??
Like most days, more questions than answers....
If you also have a kiddo who chomps down historical political cartoons, historical documentaries, listens to NPR for fun, you may have also needed to have a talk with them about how to disagree about heated politics and even revisionist history lately. Since this was not our first rodeo with The Critter being intolerant of intolerance, we were able to simply review the steps to avoid reaching a point where he really just wants to hit someone. Mind you, violence is never the answer, but these are middle school boys, and scuffles can come with the territory despite our enlightened times.
Step One - ADMIT that the Size of the Problem(THANK YOU to Social Thinking curriculum https://www.facebook.com/socialthinking/videos/10153385670211441/) when encountering dumbass hate speech is bigger than just YOU This has been the place where The Critter tends to get stuck as he feels like his knowledge and intellect should be able to forcibly persuade the other person or persons to see the error in their way of thinking and just say, "Wow! You're right! The information and emotions towards minorities I've been given in this life thus far is just wrong, and I suddenly feel a kinship with everyone." You can see how this thought process is likely an error for anyone, let alone a 12yr old
Step Two(assumes The Critter is successful with Step One, which has yet to occur) - Find an adult whom you believe will agree with you. This should be super easy here in VT and still easy in our public school and yet..... If you cannot see an adult you trust with this, go find your case manager - now! This is to prevent the emotional reaction to the dumbass hate speech from getting the better of The Critter.
Step Three - In the future, discuss 12yr old topics like videogames or football teams or math homework and NOT global historical politics and our roles in fostering equity with these kids
It's pretty understandable how the injured bird and loss of privileges due to obscene drawings and swearing by The Critter and others got second billing on Day 3....
It is days like this that make me wonder...
Is it really The Critter that is emotionally behind or is it all the other 12yr olds?? Certainly, he is behind his cognitive ability, but is "joining or ignoring" stuff like this really an approach I want to foster just so this exceptional critter isn't the exception in the FU world of 12yr old boys??
Like most days, more questions than answers....
Wednesday, July 5, 2017
Camps of Summers Past
- The OK
- YMCA Camp Kanata was okay. They left The Critter in the cabin alone for almost a whole day, forgotten there because he was engrossed in a book, until he got hungry and came out for food. He erupted once that week, but thanks to my bullet point "What to do When" card for the counselors, they knew how to help him. He loved the outdoors - riflery, archery, swimming, kayaking. He didn't eat much or shower or change clothes much. He didn't want to go back because "no one understood me"
- YMCA Camp Seafarer was okay. He erupted multiple times, and I'm pretty sure that if it were a local camp, we would have been called to pick him up. Again, loved the outdoors but basic self care was lacking. Same reason for not going back.
- YMCA Day Camp - There was a short period of time where this camp was okay. We had an amazing tiny sprite of a girl assume possession of all things The Critter and learn voraciously about the alphabet letters that follow him around. The Critter also became the go to guy to translate what kiddos who were non-verbal needed to the counselors. He was always like, "duh, he wants water" or "duh, he wants you to leave him alone".....
- The Bad
- YMCA Day Camp - How do you handle a kid whose body goes in to a panic attack fight/flight response from overheating in the summer? Our response was to pull him from camp since they were exclusively outside in the summer heat. Extreme parenting learning curve rears its head!
- Baseball/Basketball Camp - bad idea for an auditory defensive kiddo. There's that pesky extreme parenting learning curve again!
- Indoor Rock Climbing - This camp was good once the director made a concerted effort to follow The Critter rules and form a relationship with him. Unfortunately, when that director left, the next leader sucked! Not her fault but just as we have been smacked in the face with this extreme parenting stuff, ANY caretaker either learns quickly and becomes a creative problem solver ally or gives up.
- The WTF!?!?!?
- Camp CraZBrain - There was a partially full-of-something wine bottle, a steel rod, bullying, fire, barfing and Lord of the Flies-esque pre-teen boys building forts in the woods with minimal supervision. Running, chasing and swearing was involved. I only said half the things I would have liked to the camp owner, who smiled beatifically the entire time I laid into him. Pulled The Critter on day 3 and Younger Critter on day 4. We were all traumatized from that one.
Camp Day 2 - Small Things
Camp Day 1 was a hit!! Such small things belie such tremendous progress. When I picked up The Critter and asked for 3 things about camp, he gave me "awesome awesome awesome". Not much information there. I tried to insist on 3 reasons it was awesome, but hit a brick wall, and he asked me to stop and not talk about it. ARGH!! So frustrating to know there is SO much information in there, but he can't/won't share!! We hit the road to Woodstock to spend an overnight and the next day with friends - convincing him to leave immediately after pick up was a bit tense, but again the seemingly small change in him balking but agreeing to go after I guaranteed him an hour of alone down time once we arrived to spend as he saw fit, is actually HUGE progress in being flexible as well as confident that he can handle my unexpected expectation. Once there, I noticed GLITTER!! on the back of his shirt. For those of you who may have a sensory defensive critter in your household, you can imagine how glitter is not a small thing. Not only did The Critter not care about it, but he seemed pleased that a buddy, whose name he knew, slapped him on the back and put it there as a joke. Stop reading now if you are sensitive to terribly inappropriate middle school boy jokes. Later, at fondue time (and yes, he tried FONDUE!!), he was telling our friend's kiddos that one of the other buddies at camp had a million pick-up lines for girls. When asked for an example,"I have a rocket in my pocket, and it's headed for Uranus" entered the conversation. BOOM! Oy! Thankfully, these are not stick-up-your-ass type friends but let's-share-our-crazy-and-see-what-happens type friends, and laughter ensued. Again, The Critter knew THIS kid's name, too!!
A year ago, we were having a very scary WTF!! camp experience, dropping rock climbing club, not talking to ANY girls remotely near his same age and freaking out about the advent of middle school. So, these little things mean HUGE changes!! Some of these little things are even FIRSTs for The Critter like fondue and knowing fellow camp kid names before Day 3.
Needless to say, there was none of the angst when I dropped him off for Day 2 - just a reminder, that was MY angst, not his. Don't worry - my phone is still on and the ringer turned up today
albeit maybe not quite as high....
A year ago, we were having a very scary WTF!! camp experience, dropping rock climbing club, not talking to ANY girls remotely near his same age and freaking out about the advent of middle school. So, these little things mean HUGE changes!! Some of these little things are even FIRSTs for The Critter like fondue and knowing fellow camp kid names before Day 3.
Needless to say, there was none of the angst when I dropped him off for Day 2 - just a reminder, that was MY angst, not his. Don't worry - my phone is still on and the ringer turned up today
Monday, July 3, 2017
Camp Day 1
Clearly, my best intentions of getting back to T-1 to Camp was foiled. I'm sure that ANY parent, especially those subjected to the needs of extreme parenting, will forgive me.
I dropped The Critter off at the Landmark College ELO-STEM program this morning. It has been somewhat of a lesson in "Calm down Momma, cause your kid is fine" which is a fairly new experience for me, so it's a learning process. I kept waiting for his anxiety to kick in in its usual unavoidable avoidance way, but zip....simply excitement excitement excitement as he responded when I demanded 3 emotion words for how he was feeling. He danced around the waiting area, greeted the director and started introducing himself to a few other kids that were hanging around the model of campus. I keep waiting for it...... As he begins to lecture/hold court/whatever word you use to(MAYBE there was a little bit of WITH in there) the other kiddos hanging around the model about its accuracy, when and how it was made, etc. something very odd happened. Not only did none of these kiddos walk away, not only did none of the other parents start to look around for whose kid this was, BUT the group of 6-8 kids in a circle on the other side of the room walked TOWARDS the model to participate. This does.not.happen in most camp/school circles in our experience. However, apparently surrounded by other kiddos that don't quite fit, maybe The Critter fits??? I know that when he returns to the daily grind, the same "walk away" behavior of others will happen again, but hopefully(dare I??), this will stay in him and he will know that it is not a personal deficiency that causes this, but the brightness of his differences.
.....and MAYBE down the road, he will learn to speak in code a bit more so that his brightness does not make others feel diminished but helps them light up as well.....
OK. Back to the job that pays the bills that I am ever so thankful allows me to drive >700 miles and work via cell and wifi.
Don't worry, despite the newness of a kiddo that is okay for camp, I still have my cellphone on and turned all the way up....just in case....
I dropped The Critter off at the Landmark College ELO-STEM program this morning. It has been somewhat of a lesson in "Calm down Momma, cause your kid is fine" which is a fairly new experience for me, so it's a learning process. I kept waiting for his anxiety to kick in in its usual unavoidable avoidance way, but zip....simply excitement excitement excitement as he responded when I demanded 3 emotion words for how he was feeling. He danced around the waiting area, greeted the director and started introducing himself to a few other kids that were hanging around the model of campus. I keep waiting for it...... As he begins to lecture/hold court/whatever word you use to(MAYBE there was a little bit of WITH in there) the other kiddos hanging around the model about its accuracy, when and how it was made, etc. something very odd happened. Not only did none of these kiddos walk away, not only did none of the other parents start to look around for whose kid this was, BUT the group of 6-8 kids in a circle on the other side of the room walked TOWARDS the model to participate. This does.not.happen in most camp/school circles in our experience. However, apparently surrounded by other kiddos that don't quite fit, maybe The Critter fits??? I know that when he returns to the daily grind, the same "walk away" behavior of others will happen again, but hopefully(dare I??), this will stay in him and he will know that it is not a personal deficiency that causes this, but the brightness of his differences.
.....and MAYBE down the road, he will learn to speak in code a bit more so that his brightness does not make others feel diminished but helps them light up as well.....
OK. Back to the job that pays the bills that I am ever so thankful allows me to drive >700 miles and work via cell and wifi.
Don't worry, despite the newness of a kiddo that is okay for camp, I still have my cellphone on and turned all the way up....just in case....
Sunday, July 2, 2017
T-1 to Camp
Landmark College ELO-STEM camp starts tomorrow for The Critter. I've been sitting in our perfect AirBnB cabin at the top of Putney Mountain thinking about the OK, the Bad and the WTF!! Of past camps. Some background- the critter was always way ahead developmentally except for socially and other odd motor quirks like shoe tying, bike riding, hand writing. Running at 12 months, reading chapter books way before K, Legos for 16yr olds at 2. But, a head injury and relocation later, our lives changed. That was almost 5 years ago and we have traveled over 700 miles from home for a "right fit" camp experience here at Landmark for The Critter who is now in 7th grade.
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