Reflections 2024

 

This has been a year of goodbyes and new things. A season of trying to understand that by living, things will eventually end. A lot of missing things and empty places. Some new sprouts of things that Could Be in New Places.

A year ahead that looks exciting in a good way for James. That is what I am trying to focus on.

Over this past year I am finally starting to see and become involved in supports and groups I've been hoping for for decades: Online parent groups and forums that allow us to feel seen and mitigate our isolation and weariness. Inclusion in a school and the parents. New opportunities for my guy as an adult. 

I am thankful for those and hopes this is a wave that just keeps growing. 

Independent Living Skills: The Schedule

 Fall is a good regrouping time for many special needs families - the start of another school year, support services are done with summer and vacation schedules. Goals are one everyone's mind.

With ABA legacy, current school Transitional IEP, and new Behavioral Respite teams on board, it's time to surround James with opportunities and support for honing and growing his independent living skills.

Yesterday, the focus was on washing his own dishes. We have a bottle brush and gloves that help him with that. Today it's removing trash from his room and bathroom. I am still doing the heavy lifting for both activities, but we are building James'' skills. The practice, with reinforcement at school and during respite, will help.

ABA had lovely schedules at first. What ends up working best now? a brief list of Chores and Rewards (incentives). 

I am inspired to get us on a whole house chore chart for daily and weekly chores, especially with 2 more cats and storage boxes in the house. Pinterest and Google are most obliging with ingenious designs.  

Chores were verbally assigned and understood in my home, growing up. Both James and I can benefit from a visual organization. 

Advocate Psychology for Special Needs Parents

 I have been a special needs parent for 17 years now. My "kid" is an now an adult. I've debated about continuing with posting and decided that I will, but veer more to the parental side. I want to respect my guy's privacy, but there are so many new parents starting this hell of a ride, as well as those looking at that post 18 years old transition we are currently navingating. I still have thoughts, things to say, and info to share.

Allons-y! But first, some humour. 

Here is my approach to IEP meeting prep and crafting email messages, requests, and responses (after the initial emotional outburst). Each day, every day. Sometimes continuously, from the time I wake up until the time I fall asleep where I am sitting.

With thanks to all the brilliant folks at Pixar.

The Parental Mirror

Years ago, when talking with my daughter's therapist, as I tried to be there for both my kids while supporting the family with a F/T job as my family and home broke painfully apart and crashed, I was given the best piece of advice.

"Your daughter needs to see you happy," she said. "She needs to see you making time with your friends and modeling positive social and coping strategies."

At the time I felt despair, like falling down a well. I was overwhelmed, unequipped, and isolated. I felt like the worst parent ever.

Then I tried even harder to catch myself first before hyper focusing on "finding a fix" for my kids.

I have gotten better with practice. I have realized this not only applies to my daughter, it also applies to James, who has a highly developed empathy with those around him. On the plus side, he models "good" behaviours if they are around him and he can, to an extent, read a room. On the stinker side, it gives him a fiendish ability to push peoples' buttons.

But I digress. Fewer years ago, I was talking frankly with my son's ABA supervisor, about the overall regressions and socially unacceptable behaviours that roared out in the face of a horrible 8th grade experience, second evacuation due to wildfires, and COVID-19 lock down. I was so desperate for help that despite trying to bubble myself so I could remain on call for my family members with already compromised immune systems and not lose any time at a severely unsympathetic job - I called ABA and told them I wanted to continue in-home services. Thankfully, it was the right call.

"Your son is begging you for attention," he said to me. "You do not realize how stressed you are and how that is affecting him. I know you have a huge load of responsibility, but your son NEEDS you." This set me on the track of thinking again about the Parental Mirror, as I like to think of it, and how important that was for my kids and myself. 

With this supervisor's urging, I was able to investigate IHSS and becoming my son's caregiver. A family friend, who also is an IHSS caregiver for her disabled son, urged me on further. I discovered that an IHSS staff person had misled me in thinking I could not be my son's paid caregiver (at 15 hours a week) if I also worked full-time. To make a long story short, I transitioned from working 40 hours a week at an increasingly stressful job and not being paid for caring for my son to being paid to care for my son (currently at 63 hours a week) and (all things considered) earning more take-home pay. 

I am SO much happier, and it shows in my son's reports from school and his overall demeanor. It has taken me a full year to stop feeling burned out and that I can do more besides caregiving for my son and start living my life again.

Everyone will tell you that, as a Special Needs Parent, you are crucial to your child's development and well-being.  Next time you're feeling stressed and downhearted, take a look at yourself in the Parental Mirror, and give yourself a boost, love, and encouragement - just as you would to your kids. It works, and you're worth it.

Parents ... Sound Familiar?

 After a super good week at school and afternoon ABA, when all was pretty darned much sunshine and budding roses, there came Counterbalance and negative behaviours. Sigh. Autism, Spring, Teen hormones, lack of a social squad, and impending graduation - all smooshed together in an active pressure cooker. 

This was me last week:

My guy is now 18. April is a good month to pause and reflect how far he has come, honour his resiliency through life crises I never had to deal with at his age, and gird up for the uncharted that is adulthood. Stay tuned.

Showing Care and Kindness

A common thread for parents and caregivers to those on the spectrum is a deep wanting to know what their child or person is thinking and feeling. After a while we think we know. We hope we are making correct guesses.

And the there are times when a sweet connection is made, and it is everything. 

I remember, after months of being told my son might be nonverbal, he began to make progress. I cried big mama tears when, at age 4, he said "I love you" to me.

The bear hugs (sometimes flying). The big smiles and starry, happy looks at me from his heart through his eyes.

The most recent illness, with me on the sofa, made better by a concerned text from his room to mine: "Mother, do you need ibuprofen?" or a shy shy "there there" pat on my head.

The Thank You card he insisted on giving me because we were sick on Valentine's Day and by the time a friend could take him to the store they were out of those cards.

Tonight, being offered a cookie that he baked with his class today at school (it was delicious). 

I am touched, and I am proud of him for being caring and showing it.

Still Standing

We've had quite a spell of winter bugs: colds, flu, and more. 

Winter has been very winter this year, with lots of atmospheric rain and periodic plunges into the 20s. We were visited by snow in our hills and we may not yet be done with this frosty and wet weather.

We participated in two ABA sessions at our local bowling alley and while the second session was much more enjoyable for James, it is also where we picked up norovirus. Gah!

Through it all, James has been really patient. He is doing great with making snacks with supervision - quesadillas and PB&Js. He has started to participate more for PE. 

Still here, and moving forward.

ALL The Things - To Do List

 So today I woke up at 4:00 AM, courtesy of my head cold and next door neighbours who like to slam doors as they let the dog out, take the dog for a walk, come home from a walk, then leave for work.

After being sick for almost 2 weeks and finally getting 2 nights of good sleep, I was ready to Do The Things - ALL The Things. So it wasn't bad at all to start that early. I made my evil dark coffee and drank it while I made The To Do List - Christmas day menus, items to get at the store, admin tasks, reminders ... all of which helped me organize the sequence for the day. 

I made breakfast for James and made sure he had his meds. I bagged up water bottles to recycle and had James dump his launder in the washer to be cleaned. List and recycling in hand I shepherded my guy into the van for stop #1: Trader Joe's. Although it had been open only 15 minutes, the lot was full. Luckily inside was not so bad. The recycling got taken care of. Wow, milk has shot up! I discovered that the one thing they were out of was what I wanted for Christmas dinner's main course. 

Okay, back at the van, James helped me load the groceries and then he returned the cart. Off to Stop#2 Kohl's. Avoided crowded route and entered a store with very few shoppers (I remember from my Christmas working at Capwell's that you have to get there before 11 to avoid crowds). This made it easy for James to pick out a gift for his dad.  There was no one in line and we zig-zagged through the line like the beginning of Shrek in Duloc. I swiped my online order on the way out - voila, James now has a Christmas t-shirt!

Stopped (#3) at the independent grocer on the way home and had a lovely conversation with the butcher, who saved Christmas! James' Cheez-Its were and on sale on the way to the register, so I got enough to last him on vacation. 

We tried looking for deer on Deer Hill South, but saw none. At home, James helped me unload the car and he took a break while I put away food, tossed his clothes in the dryer, and took a breather. Then I helped James get started on a shower and hair washing, which we accomplished in under an hour!!! Clean clothes were sorted, folded and donned. Hygiene list was completed.

Next, we hit the road so he could visit with his dad, play video games, and give him his present. They had a good time. I got to gas up the van for the cheapest gas around and hang out in the redwoods for a nature break.

On the way back up, hanger started to set in (not too badly, though), so we celebrated being on vacation and shower/shampoo victory with a pizza and shake from Amy's. Now it's dark again at just after 5:00 PM, but I can rest. It feels so good. 

Spot Cleaning of Behaviors Past

After a week of being sick, with the holidays and  both kids' birthdays bearing down on me, I have finally committed to cleaning the house and decking the halls, one bit at a time. Some are regular spots, like the fridge, counters and stove. Others, well, send me back a bit in time ... 

When we first moved in, it was after being evacuated for a week from both old and new places because of a huge wildfire. Shortly after, COVID-19 shut us all down. Remote learning in a new house that was cramped with unpacked moving boxes and a working-from-home Mom was the 4th chaotic school change for James in about a year, after almost 10 steady years in the same district. It crashed with a divorce, deaths in the family, and the absence of his sister. 

Behaviors started up that he'd never had before, and they progressed downhill and exploded. That period was so intense that I blocked a lot of it out. Attacking spots of milk, food, and tissue on the walls, furniture, and floors today reminded me forcefully that at some point I let got of trying to get everything cleaned up because he'd only do it again and again ... I had my hands full, and I was losing my mind.

These days, James' teeth have been fixed, he has been in the same school for almost 4 years and back in the classroom for almost a year and a half. Family relationships are slowly being rebuilt. Despite some churnover, ABA has been a staunch support and parter for us as well as the school. While there is still a lot of work ahead of us, we are back in the realm of much more sane and calm.

I cleaned those expletive deleted spots, and it felt good.

Autism Today

Today on Autism, we covered good phone etiquette, emotions management, and hygiene promotion (self shower and shampoo). I found and re-assembled his electric shaver components, which he then used to shave chin hairs and trim long locks that got in his eyes. He did a great job in a good amount of time.  

We cursed the leaf blower that someone tried to use across the street, until sheets of rain discouraged them for the day. On a plus note: James used his head phones each time they tried, after only 1 initial prompt.

I did more paperwork ad emails for the partial conservatorship while monitoring progress in the bathroom. His hair is curly after a shower. I try to not be verklempt.

We discussed:

• World politics (Russia and North Korea - why are they fighting)
• Geography (are North Korea and North Carolina the same type of thing (county, state, something else)? 
• Who is going to work (of our acquaintances)? 
• Weather check-ins (Is it raining? Will it snow?)
• Where are our cats?
• Have I ever been to Spain, Italy, France, Germany, China, Japan, North Korea, or Disneyworld?
• Why is Sassy meowing so much?
• What did I used to do in High School (on weekends - hahahaha, that's another lifetime ago!)
• Going to see Christmas lights

Writing Christmas cards sadly did not happen this weekend. I'll keep trying on that one. He already picked out cards to send during yesterday's visit to Cost Plus (I am not affiliated with this company and am still calling it that, I know it's a World Market!).  

Overall, a good day. One more week of school until winter break!

ETA an hour later: Um. I spoke too soon. Someone tried to trim their bangs with the trimmer. Oh my. Well, it will grow out!

Breaking Down Eating

 It is common for autistic people to have a small and inflexible group of foods that they will eat. For both my kids, all their senses were acute. I was also a stressed working mom and so missed a crucial window of getting my kids to eat a variety of foods. 

All this to say that both my kids love carbs and plain foods. For a while I had success with getting them to eat apples and bananas. No more. Tomato sauce on pizza is the closest they get to a vegetable (no, no fries any more either). There was a week where I could get them to eat raw bits of broccoli, because they thought it was funny. No more. No popcorn, but they will eat tortilla chips.

For a while, James had a pretty good diet. Then our world broke up, broke apart, caught on fire, and kept falling apart on us. There were unresolved dental issues. James decided eating was a pain and his dietary world narrowed to cheese pizza, milk, and croissants.

Gradually, I, some family members, school, and ABA have encouraged James to re-expand his diet. I felt like Queen of the World when I got him to eat a warm pretzel in Golden Gate Park during COVID-19 lockdowns. Then ABA got him to make (and even eat) a quesadilla and a PB&J. His aunt got him to try strawberries and melon. His teeth are in much better shape and I think that is encouraging him as well.

Now ABA is providing a nutritionist to work with us on new foods and approaches for James. Like so much else that I have experienced with James, this involves breaking things down (introductions, preferences, actual tastes, bites, chewing, etc.) over several months to support a more robust and healthy diet. Bon appétit, mon fils, bon appétit.

Epic Milestone and Celebration

 Christmas Self-Care Miracle

My guy used the bathroom, took a shower, and washed his hair all on his own un under an hour. 

This is a first of epic proportions. Especially in light of regressions that hit their lowest during COVID-19 lockdowns. 

So proud of my guy!

Thank you, all you ABA helpers and family supporters!

Fellow parents, you will never know until you keep trying. I've been there, down and out. Sending you all big hugs. It can get better.

And now I am taking him out for a drive and pizza.

Okay - I Can Talk About It Now

Autistic Teen Meltdown, or: What Happened on Thanksgiving 

So, we had complete #HOLIDAYFAIL this year for Thanksgiving. Still conducting an internal investigation as to why, but pretty sure the usual suspects (relative's house, with barking dogS, and more people than he was prepared to deal with) plus teen hormones that felt tired of being bossed around during his holiday week at home, noise, plus pressure to take a shower all combined into a huge, LOUD, meltdown in front of family, across a golf course (he eloped and I got him back, which set off the screaming and yelling), into the street, and in front of a friend during a food drop. 

It was awful. 

This was the first time my family had seen what a meltdown looks like from James. The stress in keeping calm to manage the meltdown, the embarrassment of the outburst, the pain of seeing my family want to help but not sure what to do, and finally the realization that I just had to take him home and there would be no dinner with the family this year overwhelmed me and I started to cry, which freaked James out. Because as a rule I do not cry during meltdowns (where he can see me). It just doesn't help.

This time, some of the things he yelled at me were extremely hurtful, so I let him see me cry. So now remorse was added to the mix. "I'm sorry, I didn't mean to" came after each tirade. 

When we were home and things calmed down (reassurance that even though I did not like the behaviours I still liked him, being in our quiet home, and cessation of crying), he gave me his version of a hug and said again he was sorry. I thanked him for that and then told him I needed some quiet time now. 

I also said there would be consequences, so no internet and very restricted phone time. I unplugged and hid the router, put his devices in a safe place, and the internet stayed off through Sunday. He earned phone time so he could talk with people. Having myself received the Silent Treatment on various occasions and having a pretty good idea how something like that would affect James, I wanted him to be able to talk with others while still letting him know the meltdown was affecting his privileges.

Oh the talking. We covered how feelings were neither good nor bad, it's how you handle them. The importance of communicating with people before a meltdown happens. Practicing phrases we can say to make that communication easier.

Without prompting, James wrote apology notes to myself and other family members and delivered them personally. When he says he is sorry and didn't mean to, I believe him. I love him to pieces. I also knows that his life will be a lot better if can realize how his actions affect others and he makes it his priority to better manage them. 

Today is Wednesday - it's almost been a week. I can talk about it now.

Some good (IMO) links for understanding meltdowns (and no, I have no affiliations with any of these - I looked at the posted content and thought it was very appropriate for our situation):

• Autism Speaks' Challenging Behaviors Toolkit
• Autism Speaks' Blog Post "10 things that helped me during meltdowns as an autistic child"
• Toolkit to understand behaviors, from Autism Speaks
• A guide to meltdowns, from the National Autistic Society (UK)
• Blog post on Autistic teens and meltdowns, by New Focus Academy
• Article that does a good job addressing meltdowns and what to do after, from the Raising Children website (Australia)

Support and Thankfulness

 "We know that this can be a stressful time for you. If you need additional help from a live person, don’t hesitate to call the Autism Speaks Autism Response Team at 888-288-4762 (Español 888-772-9050) or email us at familyservices@autismspeaks.org. " -- from Autism Speaks' blog post Five Things To DO While Waiting for an Autism Evaluation. 

James, before diagnosis, playing peek-a-boo

We as an overall population have all been learning. James had to wait 5 months for an official evaluation, that's how backed up the clinic was. The only people who could help immediately were the North Bay Regional Center, who did the initial assessment and immediately wrote purchase orders for speech (twice weekly), O/T, and multiple services from ELI (in-home development work , group play sessions, and parent classes). Through all these great agencies I learned on-the-fly and was given many tissues, hugs, and encouragement.

Things were so different then. His pediatrician told me J could not possibly be autistic "because he looks you in the eye".

Please share this link. Autism Speaks is not perfect, but it's trying its best to reach out and support across all 50 states. And the holidays can be so rough.

Thankful for all our help and blessings this year. For all our families and friends ... for every new skill mastered ... for every new person who understands just a little better what life can be like for someone otherly abled.

Indepedent Steps

 James made a PB&J this weekend. All on his own. I am excited -
the quiet deep excitement with the word "YES" playing over in my head. 

At was all the more terrific because he did it when he was frustrated. The pizza delivery he'd earned was, shall we say, messed up on the delivery end. He was hungry. I suggested he make himself a snack, something like he'd been practicing in ABA sessions, like a sandwich or quesadilla.

He said "Peanut butter and jelly? um, okay - yes!" Out came the jars. He found the bread and pronounced it "good!" and proceeded to make his sandwich. He needed a little help with cutting it diagonally, but that's it. No prompting, no fussing, just calm and confident sandwich making.

We celebrated by visiting Diagon Alley via the first Harry Potter movie. James faded out soon after that scene. I think the shouty Dursleys were really his favourite part.

It hit me again this morning, as I was doing errands. Driving the van on a clear sunny autumn morning, where the flaming trees showed bold against the blue sky, yet the sunlight felt warm and mellow inside the car. Again, the quiet "Yes!" and then "Thank you". Because we are here again, moving forward. James is using life skills we've been working on.  

When Back-To-School Nite is a Closed Door

 Last night was the first on-campus Back-to-School Nite (B2S Nite) since COVID-19 shut everything down in 2020. I was so excited. I lined up coverage for James, because eloping is still a thing and I wanted to be present for this night in his senior year. 

Then I checked my emails and saw that his room, and only his room, will be closed, because the teacher was sick. My heart sank, and then I was angry. Not because his teacher was sick, but because B2S Nite has for me become a symbol of how special needs kids and parents are so often sidelined and ignored by the educational system, and a focal point of the pain of being reminded that our kids are different and don't count as much as others.

From Kindergarten through 4th grade, James was in a regular classroom with a 1:1 aide. I loved B2S Nite, not only to see what was happening in the classroom, but to meet other parents and have a break myself. James always wrote me a note, along with his peers writing notes for their parents. It was great. 

Then I allowed him to transition to the Special Day Class. Little did I know it, but I was signing away a lot of things I liked about James' school year. No book fair reminders. No class party participation. No field trip chaperone days. And no B2S Nite. When I brought this up to the teachers, they were surprised. That is when I discovered that their experience with many of their their parents seemed to be sheer relief of being able to drop their kids off and not worrying about them. Full stop.

I understand that relief, believe me. What I don't understand is the lack of interest of what goes on in the classrooms, and how that is almost encouraged by the schools in our local districts. Frankly it's unnerving.

This year I asked if I could sit in on another classroom and was easily accommodated. Even though it was not my son's class, I was able to greet many parents and get some good information about programs that exist in the years after high school. I ended up enjoying my night out, getting information, socializing, and feeling included as part of the school. 

I would ask that teachers and schools and district not let anyone's Back-to-School Night be a closed door. Rather, have a Plan B for another teacher or Staff to cover or to have volunteers set up and proctor the classroom. Please don't increase our isolation. In a world where teachers are not getting the respect or support they need, let B2S Nite be an opportunity for interested parents to get on board and pitch in to help make the year a success and feel a part of something good. I understand it's not as simple as this suggestion, but I think it's a good start. 

What It Takes

I have over 90 hours of respite every 3 months. I have not been able to use it in over 7 months because there are no workers I can trust to be with my son. I have gone through 2 agencies and asked my regional center for help and still I cannot use my respite hours. 

I am lucky that we have ABA - literally thanks to Feda and other Autism Mom advocates - and a great school (who sponsored a symposium where I was able to meet and speak briefly with Feda). Also the support of family and friends. But still I am way short of sleep and time for myself.

Elopement seems to ebb and swell with my guy. So far this year, it's been on high for extra long. The sofa has become my bed and have signs and bells on my doors to deter eloping. Many nights I feel like I am holding my breath in case I miss hearing something. I made sure my kids both had swim lessons until they knew how to swim and made sure to introduce them to the river and ocean so they know how to respect them. I memorize what he's wearing before he goes out the door and have photos on my phone to show in case he does elope.

My guy is generally sunny. He has a good sense of humor, and can be sneaky.  He is kind to our kitties and helps with the chores. He is also 17 and wants to get out and explore.

I am still sleep deprived and have been for years. But so far, he is safe. Through fires, moves, divorce, upheavals, awful school settings, COVID-19 isolation, we are still here. Not everyone is so lucky. 

Please take a moment to view this Autism Safety Awareness video to get to know more about autism. Then visit the September 26th site and read about tools and information you can use. It can literally save your life.

Waiting ...

 Waiting is part of life. Today seems dedicated to waiting: 

1. Waiting to hear back about the mythical thing that is respite (person and agency are now ghosting me).
2. Tortuous waiting to hear back why my dental insurance thinks it's been canceled, after approving payouts and cashing my monthly checks. 
3. Pins and needles for the latest books by two of my favourite authors to drop on one day.
4. Patient marking of time until the next episode of She Hulk comes out.
5. Dogged pursuit of waiting for next steps in the conservatorship process.
6. Day by day plugging away at housework, bills, and workouts.
7. Waiting to hear back from doctors.
8. The constant "please let it have been a good day" mantra of refreshing the daily reports folder after 3PM to find out how James day actually went at school.

And so it goes.

(Epilogue: Day went okay, if off-schedule for a good part)

Inclusion in School: Fails and Suggestions

Where inclusion falls down in public schools

From Kindergarten through 4th grade, James was in a regular classroom, with a 1:1 aide and pull out services for speech, O/T and Adaptive PE. For his triennial IEP preceding 5th grade, I agreed to placement in the Special Day Class, as James was being impacted by classroom noise and not able to follow auditory instructions and was spending less time in said classroom.

Oh, how I wish I hadn't. 

The school ignored his IEP and tried to make him repeat the 4th grade because "they wanted to try something new". No prior notification or IEP meeting. They changed his ENTIRE program and work from what we all agreed to for no other reason (that I could see) than it worked better for THEM. They kept denying they were making him repeat the 4th grade until I called a meeting with a lawyer in attendance and proved, with homework from the previous year and the school directory of grade level of teacher classrooms (for his inclusion portion of the day), that they placed him back in a 4th grade environment for social interactions and class work. Then they claimed (with the lawyer present) that they'd "stopped when I requested it". I asked which was his inclusion class, and it was still with 4th graders.

I was a working single parent, going through a painful divorce, poor, and my daughter was going through a really rough time. They counted on my being too swamped to notice or put up a fight. They also counted on James not saying anything. Not for the first or last time, I was furious at how our kids are the ones who suffer from inflexible rules and a cluster school system that had no incentive to fix things.

Here are some thoughts, based on our public school experiences and the needs I saw in my son and others, that could better support schools, teachers, and inclusion:

• Keep 1:1 aides with a student throughout their elementary and middle school years if they are working well together. 
• Include the Special Needs or Special Day Class students in school events, such as back to school night, Book and Science Fairs, and Open House night.
• Set up an inclusion classroom to incorporate working/helping a special needs classmate as a special experience / reward.
• Carry the inclusion into meal times and recess in a low-key way (e.g., turns eating with them and playing games such as conversational Uno or catch). 
• For schools that have incorporated volunteer hours into student curriculum, consider providing the opportunity to work with inclusion or special needs students.
• Consider working inclusion into your school and classrooms as an opportunity to teach all the importance of empathy, getting to know someone, creative thinking, and helping others.
• Have monthly get togethers for the parents of special needs students - part social aspect and part information about programs available (such as summer camps or dentists who work with special needs patients), and how to prepare for the years ahead.
• Partner with local and national non-profits to fund or support some of the above - they are out there, and growing in numbers!
• Do not make the Special Day Class the place to send students because they are disruptive to the rest of their regular class (oh yes). 
• Remember that special needs students can hear what you're saying and understand more than you probably realize. They also do not forget it when they think a fellow Special Ed classmate has been treated unfairly. Sometimes it can be helpful to have a follow up touch base after an incident.

After all, the numbers of children and adults receiving a diagnosis of autism continues to grow. Adapting to changing classroom and student needs are imperative for a healthy society. 

Advocacy Tools When Behaviors and IEPs Go Awry

 I came across a Disability Rights California post in my social media feed that I wish I'd had several years back. It talks about steps to take and offers tools to use if there are Behavior and Discipline problems with you child and the school. The letter format for requesting a copy of their Behavior Emergency Intervention Report and the Checklist of steps to take if you child has been suspended or restrained at school are excellent. 

When James was in 8th grade, at a new school, his IEP was not followed. He was set up to fail. For the first time ever, he was suspended. That principal did so many things that were both hurtful and illegal that the lawyer I hired, who preferred to peacefully negotiate, took umbrage. 

I can tell you that documentation, being able to create a clear (and provable) timeline of events, including letters and steps like those mentioned above, were vital to us getting our position heard and James receiving the best placement for his (current) school.

Do not be afraid to use these tools. You need them to advocate for your child or family member. You can even use the letter template to request other legal services to support your child, such as a request for outside assessment by a non-district Neuropsychologist. You can also use it as a template to ask questions or request an IEP meeting. It's also great to have just in case. Fantastic if you never need to use it, but so very, very handy if something crops (or creeps) up.

The Disability Rights California has a well-organized online center of information related to Special Education, as well as Resources and Programs for those with disabilities and those who advocate for them.