World Autism Day

You’re going to hear a lot about Autism this month. Some call it Autism Awareness Month, others may say Autism Acceptance, while here in my house its more Autism Appreciation Month. Regardless, you’re going to see articles that get it right, but unfortunately too many who get it wrong. I’m just going to share a few of my favorite resources.

Like anything, check the source. The best source on Autism is Autistics. If you’re looking for resources check out Autism Self Advocacy Network. There are great resources on YouTube as well. I really like a series done a few years ago called Ask an Autistic. I also like Hunter Hansen -The Life Autistic and Robin Roscigno Tedx Talk.

You should probably be aware that symbols we normalized in the past to represent Autism were manufactured by neurotypicals. Autistics in your life may not like to be symbolized by a puzzle piece. In fact, many in the Autism community prefer the infinity symbol and/or using rainbow colors for inclusion. You might want to ask before posting a bunch of puzzle pieces if your loved one likes that symbol.

One of the best books out there on the history of Autism as a diagnosis is NeuroTribes-The Legacy of Autism and the Future of Neurodiversity. by Steve Silberman. It gives an incredible perspective on Autism throughout history and how our current definition hasn’t really been in practice that long at all. I also like the recent book, We’re Not Broken: Changing the Autism Conversation by UNC Grad Eric M. Garcia.

What I love about Garcia’s perspective is not only is he actually autistic, but that he gives real life policy examples. Public policy that could benefit those with disabilities. He also speaks from a non-white perspective which is so important as disability and policy surrounding disability is impacted by white supremacy.

I also enjoyed reading Autism in Heels: The Untold Story of a Female Life on the Spectrum. by Jennifer O’Toole. A great read especially if you’re from a generation that didn’t have definitions of Autism that included traits found in girls and women. It’s something I’ve begun to explore in my own life. Maybe some of us just aren’t just introverted, but it goes deeper. Don’t be afraid to explore. Self diagnosis or even formal diagnosis can be healing and eye opening. I’m in the process myself.

My very favorite video is this from Robin Roscigno. It reminds how I started and how I’m trying to learn and be a better parent and citizen on this earth.

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Disability is Not a Bad Word

Young Girl with brown hair. Eyes appear crossed.  She is not smiling wearing a yellow and red ring tee

This year I’m celebrating Disability Pride Month. Disability Pride Month takes place in July to commemorate the signing of the Americans with Disabilities Act or ADA. (Only the military rivals the Disability Community’s ability to use acronyms.) ADA was signed on July 26th, 1990. While I generally focus the blog on my son, this month I’m turning the lens on me.

Growing up, my family never used the word disability. It wasn’t part of our vocabulary despite the fact that my eyes were clearly very different and I wore a patch all through elementary school. Despite the fact that I spent time in traction and a body cast, that had a lasting effect on my body. I had 5 surgeries that I know by age 10. I was born with severe strabismus and bilateral hip dysplasia. Nope, we never uttered the word disability.

I never questioned it. I just assumed it was my parents no nonsense view of the world. However, I think in the back of our minds, it was because disability applied to someone else. It applied to someone in a wheel chair or someone with an intellectual or mental issue. Why wouldn’t we embrace the word?

People have gone out of their way to not use the word disability. They’ve used handi-capable, special needs, or differently abled. Its in the name of putting a positive spin? Yet if you view disability with pride and positive feelings, then there is no need for these other words. In fact, the disability community views these as ableist.

Ableism is defined as discrimination or social prejudice against people with disabilities based on the belief that typical abilities are superior. It can manifest as an attitude, stereotype, or an outright offensive comment or behavior. It can be a Kindergarten teacher pushing down on your right leg as you try to sit crisscross-applesauce while yelling at you to sit right. It wasn’t possible. It hurt.

So, I’m celebrating Disability Pride Month. It was this amazing post NY Times opinion video that gave me a little boost. I was watching it through tears. Every year in elementary school the teacher would put me in front of the class and have me explain why I was wearing an eye patch. Somehow this was to save me from having to explain to kids individually. I never had good explanations to describe my eye disability. Lazy eye was sadly the best I could do, and I absolutely hated that term. This video was amazing and visually showed the world how I see. Maybe it was ok to say I have a disability.

I guarantee your eyes won’t cross if you read too much. Just give me that one phrase today. At some point I will learn to embrace pictures of me. Give me time. I miss contact sports, but the pins holding my left hip together tell me otherwise. Disability Pride for me is embracing a word, I was taught to ignore. It is embracing my own history and also to learn from others.

Disability Rights has a long way to go. We need new policies. We need to move away from a very white centric way of viewing solutions. We need to look at how disability intersects with other civil rights struggles, so we truly embrace inclusivity. We need to keep the conversations going. Keep talking, but more importantly keep listening.

Young 2 year old in crib.  Leg extended in a cast with traction.  Eye patch worn over eye.

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Pandemic Unstandardized Testing

As an advocate for public education some struggles at least make sense. A push and pull about who holds power, state control versus local control. Some are frustrating because the struggle is over an ideological differences like privatization market competition versus providing a public service for the common good. Then there are the struggles that make zero sense to me. Standardized high stakes testing during a Pandemic falls into that category.

So thanks to the federal government, school districts all across the nation are being forced to administer standardized tests this year. In North Carolina, these tests are mandated by state law to be in person and for high school students they count for 20% of their grade. When the federal government decided not to provide waivers, our state government decided not to change any of the testing requirements.

DeVos has claimed her reasoning is to measure learning lost during a Pandemic, but I believe it was part of a deeper push by the administration to push in school learning over virtual options. Even with her reasoning, how will this data prove anything we don’t already know. We know the Pandemic is disproportionally effecting our already marginalized students.

There will be plenty of time after the danger is past to assess and work with students who are lost in the digital divide or just struggling during this historic event. Did I mention danger? Yes, danger. There is real danger in allowing in person testing during the real threat of a virus. Our first and only responsibility as a society is to keep everyone safe. Having an in person tests risk lives so someone can have a data point.

In North Carolina, the deadline looms large. In December our Early College and modified calendar schools will be tasked with administering in-person final End of Course exams. This includes our CTE (Career and Technical Education) students as well. The grade on these tests will count for 20% of the students’ final grade. Many of our students and parents made the decision for a virtual option. Respect that decision. Time is running out to keep these students and teachers safe.

Yet, it feels like there is little to no movement on the issue. Do leaders not realize how soon testing begins? Do they not realize the danger to students, teachers, and staff? I hope they do.

We can all argue who fault it is until we are blue in the face. I could care less. What I do want to see is action. I would like to see our leaders act as fast as they can. Now is not the time to play political games. Now is the time to keep our students and teachers safe.

So, I don’t care if it is a state wide bill, or an executive order, we need action on this issue now! Our students shouldn’t be left with the choice of a bad grade or risk of infection. That is a terrible choice and not one that should ever be put on the shoulders of our youth. None of this makes any sense as a policy, so fix it.

Add your voice to the issue! Sign the petition.

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Cohort C/Track 3

I just got the email, cohort C in track 3. My son has a date to go back to school in person. I’m worried. My worries aren’t just about Covid though, my son was struggling in school long before the virus started. He had an unmet IEP and ended up on Home Hospital. My son has felt trauma in school for years. Now he will go back in an unprecedented situation.

Deciding to let my child go back was not easy. I had to think about my child’s physical health and his mental health. I had to think about my capacity to be an aid to his online learning. Would I do him more harm than good? Would school in this Covid world be the wrong place? What services would he miss out on if I kept him home?

The decision wasn’t made easy for families either. There was confusion over what the plan would be in the beginning. One plan was cancelled another implemented. For us it came down to what plan would we most likely keep a consistent teacher. My son needs someone he trusts most all. We started that trust process in Home Hospital and followed through the spring and now fall in a virtual setting. If we had to change teachers, I’m not sure how we’d begin to navigate this mess. We decided let the child follow the teacher rather than a plan. The teacher is plan B so that is us too.

I was never a big fan of going back once our county’s numbers began to rise, and I began to hear our teachers felt they didn’t have the PPE to keep them safe. I advocated for all sorts of scenarios that would get in-person help to those in need, but limit exposure time. I really tried everything I knew how to do. I feel in some ways I failed. The plan to go back isn’t the one I would have chosen. Yet it is the best plan I have for my child right now.

I’m putting an incredible amount of trust in a system I know to be broken. I have the data. I know the deficits we face in the amount personnel it takes to run a system as large as Wake County NC. I know the failings from our state government and impact that has on our most vulnerable students. I am trusting that the staff who recommended the opening of our regional classrooms know what they’re doing.

Not only do I know how impossible running a school in North Carolina is at this moment, but I also know on the flip side. My kid can’t change teachers after all the trauma of last year. I can’t homeschool, I’m not a teacher. I’m not the type of person who can homeschool and lesson plan many subjects. If it was a History class, no problem. I’m perfectly qualified, but that is just one subject. My son needs directions broken down and help with executive functioning. He needs to be challenged without triggering his anxiety. Its a tall order for any teacher. I need help and that is what I’m hoping this reopening plan will do, help.

So, my challenge to Wake County Schools is simple, protect my child. If you in any way have doubts. If you in any ways can’t secure enough staff. If the PPE money isn’t what you need, reverse course and go back to the drawing board. We’ll be angry, but we’ll be safe. In the meantime, I live in hope that my child will emerge out of this better than he started.

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I Need to Call an IEP Meeting

We have teachers at odds with parents, we have school board members at odds with both parties. I only know what my administrators feel based on a survey. What we need now is a district wide IEP meeting. If anyone can solve the problem of getting children back to school its the special needs community.

We have been negotiating school and what it looks like for our kids for years. We often don’t get everything we want or need, but we get something we can work with at each meeting. It tends to get better with time. At the table are teachers, administrators, a parent, and an advocate who knows the system. We need that table right now. An open discussion for solutions and accommodations.

Special needs families have perhaps the most to lose if school doesn’t come back. Its not just about academics. Its about services like occupational therapy. Its about life skills that are taught and its about our kids’ quality of life throughout a painful time. School will in no way solve all our problems, but it might help bring back some essential needs of kids who rely on schools for therapy.

Likewise special education teachers are perhaps the most at risk. Many children, in what some call regional programs and others call confined classrooms, will not be able to wear masks. If masks are the key than we need to make sure our teachers have other reliable personal protection equipment. They indeed need a higher quality mask and maybe even air purifiers. These teachers will need to move and hold their students.

So, admins what can you provide already? What don’t you have, but believe through PTA, community help, and a big ask of our government can you get? Is it possible to make this work? How comfortable are you with the situation and do you see something parents and teachers don’t see?

Finally, our school board members are there to listen. They are there to moderate because everyone is tense. Its safety, its quality of life, and for special needs kids its knowing that failure to act might mean a lawsuit. They are there to make a decision. Ideally we’d invite even more stakeholders from transportation and support services, but hey no IEP meeting is perfect either.

Are we doing this and replicating it all around our districts? I know there are emails and meetings. However, how many meetings are there with teachers and administrators. I know as a parent, I’m invited to very few in which many stakeholders are in attendance. My Board Advisory Council hasn’t met since June. As our county approaches a vote, shouldn’t we try this model before we go any further?

We might fail completely. Maybe we only get the doors open for a few children. I can’t imagine tensions between all parties getting any worse than they already are. I call an IEP meeting for Wake County children to discuss the reopening of schools. Who’s with me?

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My son’s IEP binder is thick. I take it deadly seriously and I expect my son’s school to take it seriously too. We have a lot riding on the document, including my child’s general health and mental welfare.

I gave a lot of grace to our school system in the early days of the Pandemic. I was happy to not worry about grades and testing. It made it somewhat easier to plow through. It wasn’t by any means easy.

So now we are preparing for the fall. Yet, I feel like I have no idea what choices there are to make. I don’t know anything about special education in the Virtual Academy or for Plan C. The problem is while typical families have a FAQ and are having robust Twitter conversations, we have mass confusion and no answers.

So, far the two official communications I’ve received from the Special Education Dept for Wake County Schools was a transportation survey, and a robocall/email detailing how many of us thought we were going to go back was incorrect.

For kids in a contained classroom like my son, families were initially told that our kids would remain in the classroom daily. Extra precautions would be taken, but since our specific population can’t do transitions, we wouldn’t have to worry about a rotation. On Tuesday evening, I learned this was false.

I was mad yes, but I was even madder the next day, because I didn’t know what my other options would look like. At the Open House for the Virtual Academy, the section on disability simply said they would uphold our IEP and deliver services. That’s the equivalent of saying the school won’t do anything illegal. That isn’t information.

I’m increasingly concerned that they don’t have a plan for us. I’m increasingly concerned that we are an afterthought. After we get general education figured out we’ll concentrate on things like special education and ESL (English as a Second Language). Relationships run deep with out students and teachers, but so far I don’t know how that will play out in Virtual Academy.

I can always choose what is now Plan B but will most likely be Plan C by Tuesday. It is more risky. I’m still not sure I know how services will be delivered, who will be delivering them or how my IEP will be managed. I do have a better chance of retaining the teacher. I think. I don’t actually know.

Look I know Wake County is huge in scope and size. I know this is all new. All the more reason Special Education Dept should be communicating with parents and their teachers. All the more reason to put special needs first. If we are more complicated, tackle it first and prioritize it.

Right now my Facebook page is full of promoted ads for private schools and education companies. These people know what they’re doing. I’m staying put in public education. I’m going to keep pounding on doors until I know what my options really look like for the fall semester. I’m a fighter. Not everyone is, nor should they have to be just to get some basic answers.

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So How Did Remote Learning Really Go?

I feel like I’m filling out endless surveys and taking part in numerous town halls all about remote learning and the future we all face. I can say that remote learning was remote, but far from learning.

My son had just come off yet another bad education experience. What could go wrong, did. So, kiddo was not in a good mental place to begin with, and then COVID-19. I tried. I really tried, but it was a mess.

At first, during the early stages, I was bombarded with resources. All learning games, YouTube Channels, and virtual tours. None of which my child will do. In fact, the idea that my son doesn’t learn well with education games, and videos is in his IEP. I was left sorting through things and finding a path to something literally tangible my son was willing do.

When ‘real’ learning started I had to be all things wrapped into one. Most of all I had to be an accommodations expert. In real time, I had to modify assignments. For example, since my kid wouldn’t sit and watch a science video, I watched the video and then I tried (mostly failed) to provide the lesson myself.

My son and I read together, did math together. Mind you I might be able to do 4th grade math without thinking too hard, it is a special skill to break down the concepts and teach math. Lucky for me, I have an expert mathematician in the house. A luxury most families don’t have.

I took the ELA book The┬áHope┬áChest and turned it into a social history lesson on life between 1918-1920, complete with parallels to today’s pandemic. At the end my son summarized the time by saying it was racist, dangerous, and disgusting, I felt I had accomplished my goal. Mind you History was once upon a time my field of study. I was teaching, make no mistake, and it was difficult.

For the most part, my son got bits and pieces of something. I have no idea if he will retain anything. All the while, things like social skills I feel are slipping. Since these skills don’t come natural, my son needs practice. Practice that just can’t happen under the circumstances. Transitioning back to the ‘real world’ will take a herculean effort for all those involved.

In a school board meeting on April 28th Karen Hamilton of Wake County Special Education Services was quoted on Twitter saying, “Special Education Services don’t look the same as they did before March 13, but are comparable & proportionate in light of the abbreviated & altered school day now being offered remotely.” I can not disagree more. The services didn’t feel or look even remotely comparable. For one thing I was the services.

I shepherded my son through the end of the semester. I have a kid who isn’t in the best place mentally. I’m faced with regression of skills due to trauma from a bad education experience at his last last school compounded with all the challenges this virus brought up. We have no real data, and IEPs are suppose to be based on data collection. My son needs a team of support, and really what he got was just me.

So, as we discuss the fall there are those like me, who want an in person option. Mental health in my family is as important as physical health and both are related. I know that I was an insufficient educator, OT, and speech therapist. I also know that what worked was because of love and trust.

I worry what the fall may bring. First I know that so much will be dictated to us. The state of emergency must be lifted or we’ll all be home. Next, we have a NCGA who like to write laws about our start dates, when they are last people who need to be making strict education policy. Finally, we need to have sufficient funds to make any of this a reality. I’m not even convinced that we have enough funds to go back in the classroom no matter the capacity.

I recognize the risk to our educators. I also must lift up working parents. I couldn’t keep a job and do remote learning with my son. I know some families who just couldn’t manage. This felt temporary, but as fall approaches, it feels like something we are going to have to address. If kids are at home, they need to be safe and learning. How do we ensure that is happening? How would working parents manage a rotating schedule? If kids are at school how do we keep them safe as well as all those who work in the school safe too? It is a mess.

I don’t envy decision makers. I know from the class size experience that to reduce class sizes we needed more educators than we had, more space than was available, and more money to pay for it. I think this rings true for opening up in the fall.

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Lowering the Bar

I’m trying to lower the bar during this Pandemic. I’m trying to lower my expectations for my son, others, but mostly me. It runs counter-intuitive when it comes to myself. Don’t I have to step up my game to help my son and family? Yet, its might the most important lesson to learn.

Even my ten year old seems to grasp that we are in unique times. He feels the anxiety. He already has enough anxiety. The Pandemic worry wakes him up at night. So, his daily schedule reflects his feelings. We have lots of breaks between more challenging items. We go over the schedule at dinner the day before so he knows what to expect from the day. We make changes together if the day just blows up in our face. It has. It will again.

See my kiddo, doesn’t do independence yet. Its an unmet IEP goal. Thus, I’m his friend, mom, teacher, OT, sometimes therapist, and most importantly giver of snacks. So, if my husband is at work, I’m it. I’m on the kiddo clock. It can be exhausting.

This is why I need to lower my bar. I’m tired, and it’s OK to be tired. I don’t have the usual volunteer hours. I don’t have much personal time. I’m not binging television unless you count me watching episodes of Picard while I have free CBS All Access. There are only 10, so it won’t last.

It is hard watching friends on social media enjoy hobbies. Its harder knowing they’re getting naps during the day. I am missing meetings. I’m lowering my bar so I can shepherd my kid through this tough time. I’m lowering the bar so I can be mentally healthy.

If I’m having a tough time, I have to believe others are too. I am giving them the benefit of the doubt right now. I’m not expecting my kid’s teacher to have it all together either. My dining room table looks like home school vomited on it. I’m sure our teachers have it worse. There are those who are struggling with all sorts of virus/shelter at home issues. They need my patience.

I’m still paying attention, just not close attention. I might be a day late or so. I’m not giving up on fighting for our schools or our election, but I’m trying to just do the things that need to be done today. No need to worry about November, when our food bank could use more funds. I’m taking it slower. I’m going to miss online petitions and other advocacy events. I’m not going to try to keep pace with what I was doing before the Pandemic.

There is lots of chatter about distance learning. I’m lowering my expectations. I’m OK with pass/fail. I’m Ok as long as my kid gets some learning in when he is able. I realize he might not be able all the time. I hope to get enough content in his brain that he is ready for 5th grade.

In another lifetime, I was Lisa Simpson insisting, “Grade Me, Grade Me! I’m ever so smart.” Now it seems ridiculous. Letting go of getting As was the hardest life lesson for me to learn, yet I think in the end it made me a healthier person. Compared to getting sick, losing a job, or worse, giving up grades seems like a reasonable sacrifice for the times.

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Homeschool? Me? Probably not without help.

Hey friends. Our school officially closed it doors for the Covid-19 Virus on March 16th, but my journey actually began a few weeks before the calls for social distancing started.

My kid has the worst luck. We started with a new teacher in January only to learn that the teacher was not going to finish out the semester. Meanwhile, my kid and the principal were butting heads repeatedly. There were number of issues at play. There was my own kid’s escalating behavior, there was his anxiety and disability. There was a school with antiquated notions of discipline and ableism, and now turnover My team and I decide we couldn’t have my son stay. The trauma of a bad school setting was only solidifying the behaviors at play.

At a very long and taxing IEP meeting we made the decision to put my son on Home Hospital. The idea was to phase him into a new school with a really good teacher. We didn’t put a time table on things and this is when my own panic set in.

You see, Home Hospital is only 1 hour and 30 minutes. Basically we would have kiddo’s future teacher do small tutoring sessions after regular school hours. The biggest question I had was how do fill the rest of the time? What resources are available? Do I have to give up all my volunteer work that has become as serious to me as a career. Maybe this year was the year I figure out how to organize a campaign to end the special ed cap? I freaked out because the daily responsibility of keeping my kid on a steady stable schedule was all on me. All the outside resources I wanted came with a waitlist. My entire day became don’t overwhelm him, but don’t let him get too bored. One big effort just to keep meltdowns away.

Now, it seems silly. One week into our new IEP new plan, the calls for school shut down came. We’re all in this now. We’re all scrambling and sharing and sacrificing temporary career goals. It shouldn’t be left unsaid how difficult the sacrifice can be for some. It seems less daunting now that we’re all in it, but a few weeks ago, I felt overwhelmed and even angry. It was OK to feel that way. Its OK to feel that way now as we navigate difficult waters.

Look some kids are great at learning from home. Some kids are self motivated and like to learn. My kid isn’t. It takes a small army of expert public educators and private therapist to get my kid to do simple things. My army is down to a few online foot soldiers.

There are so many resources that it can make heads spin. Still, I can’t just sit my kid in front of DreamBox and expect him to complete math. His brain doesn’t work that way. Home or at school, assignments need to be accommodated for my kid’s unique needs. There is no computer program that does that. My army includes people specifically trained to figure out how to get the best from my son. So, I wait

I wait for further instruction. I do keep a schedule, but it is very flexible. It includes things like math flashcards. My son is 10. Reviewing simple multiplication tables and simple math is good for fluency, and as long as there are snacks my kiddo is compliant. We have now phased in some reading. Not timing it. Just getting what I can out of a kid who sees learning as hard.

Not every family feels equipped for the tough times ahead. My kid is too scared to go to Occupational Therapy even though they’re seeing clients. He fears the virus. We do some therapy online. I miss the hands on help for my son’s issues. Social distancing comes natural to my son. However, I fear we may go even further backwards in social skills. I am not an expert at designing curriculum for a complex case like my son.

All this and I’m financially stable. I don’t have to worry about mortgage payments or other bills. Special needs day care is a difficult challenge as it is. In these times, I’m sure it feels downright impossible. I have the privilege of being able to be home with my kid. Schools provide so much for special needs families, and sometimes even the food for most meals. We should never underestimate the power of those teacher student relationships, as a tool for special education learning.

I’ve had a few weeks to digest the problem. I know I’m going to need guidance. I’m going to need more than a google doc of resources. I’m going to need the help of our educators. I’m going to need my friends. I’m going to go slow. I’m going to be forgiving of myself and my kid.

I’m going to need the help of my new family member

Meet Barney Link Pope. We all need some cuddles from loved ones in these tough times.

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I thought I did everything right

I thought I did everything right. Not that I’m some perfect parent, but I tried to be the best I could be. I thought I did everything right, but my child still experiences regression.

We had early intervention. We had specialists, therapists, and the like. Our family showed up, took notes, and read everything we could on this mystifying condition known as Autism. I listened to #ActuallyAutistic videos. I read parent blogs. Still, I’m sitting at home dreading my son’s IEP meeting because my child has regressed on his progress.

You can do everything right, but when a neuro-diverse kid encounters a neuro-typical world there is very little you can do sometimes. For us, its school. In the beginning, it was difficult. Still my kiddo made incredible strides. He made friends, he tolerated noisy busy spaces sometimes. Most importantly, my kiddo learned new things.

Now, I have a child who gets anxious at the mere idea of learning. He visibly shakes at the mention of going back to school. In our quest, to find the best classroom for my son, we failed. He is more traumatized now in a self contained classroom designed for social emotional behavior issues than he ever was in general education. We’re still dealing with IEP issues. We’re still dealing with discipline issues. Last spring the new school promised that they would have a better understanding of disability, yet I’m back advocating against suspensions given because my son has meltdowns. Some meltdowns caused because of lack of compliance with the IEP. I’m back to saying repeatedly you can’t punish Autism out of a kid.

This all spills into my home life too. Once my kid liked books and begged for me to read to him, or would spontaneously read in his calm down corner. This isn’t my home anymore. Once my kid ate some meals with the family, and now he seems overly sensitive to any new smells in the kitchen. His diet is even more restrictive, as are his interests.

We can trace the start of this to events that occurred in school. The problem is, I’m at a loss on how to fix it. It feels frustrating to beg for more support when what we get is a hodgepodge of TAs with no one person my son can turn to for help. How do I trust a school that seems to have so little understanding of my son’s issues? How do I get my son back into a building he associates with fear? How do I send my son back into a building I associate with betrayal and mismanagement?

I will be in an IEP meeting on Friday at 11am. Its not the time or day I’d like. It was mandated. This date or much, much later. Not really a choice for a kid who is experiencing mental health issues. I had team members on my side I’d like to take with me, but I can’t, because they couldn’t accommodate timing. This means even the privileged resources I have, I can’t always use. It is a big system, and flexibility is a big issue. Yet flexibility is the thing my family needs the most.

Maybe I’ll get answers. Maybe not. We persist. We move forward from where we are now, hoping we get to a better place. There are no clear choices. Not all disability stories are inspiring. Sometimes we take too many steps backward and not enough forward.

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