The Last Day

Brandon’s last day of school was today. I received an email from his teacher that said they had a pizza party and cake to help him celebrate. She also said Brandon said day penguin (he has trouble saying the word program, so day penguin it is) when they asked where he is going next. She said there were lots of smiles and hugs today as he said good bye to his teacher, paras, therapists, and most importantly, his friends.

When Brandon got home from school, he said no school. I told him he does not have to go to school ever again and he was quite happy.

I will miss the connections I have made through his school. I will miss talking with his teacher when Brandon is struggling. I won’t miss the IEP meetings, but I am going to miss hearing all the wonderful things about my son.

Brandon will go back for his graduation and we will be there to help him celebrate!

When he got home, we found this in his backpack. I absolutely love it and I think we shall keep it forever!

Look at that happy face!

Brandon is ready for the next stage of his life. And so are we.

Our Experience with Mainstreaming

Mainstreaming our kids. How does it work? What is it? Is it the right answer for everyone?

Students who are mainstreamed are expected to keep up with curriculum with minimal supports. Some modifications can be made, but there are restrictions.

When Brandon started school in kindergarten, he was mainstreamed into our public school system. It worked well during the first year. He was mainstreamed into gym, music, and art.

When he wasn’t in these classes, he was in a self contained room. All the students in his room had a developmental disability. It was a small room. Therapies were done in this room, educational goals were worked on in this room, life skills were worked on in this room. There was not a lot of interaction with the other students in the school.

By first grade, the IEP team decided Brandon would be mainstreamed into just gym and music. In second grade, we were told he would no longer be mainstreamed into the gym class. After Christmas of that year, we were informed he would no longer be mainstreamed into the music class.

We asked why this happened and were told that Brandon wasn’t able to keep up with the class. He wasn’t interested in learning music theory, or art theory, and he wasn’t able to follow directions in gym class.

We asked if he could have more supports in these classes. Nope. There were not enough teachers or paras to go around. If Brandon were to have more supports, another child would have less supports. We certainly didn’t want that. We wanted more supports for all of the students in Brandon’s class.

We asked if the therapies (speech, OT, PT, and music therapy) could be completed according to a schedule. For example, could music therapy be every Monday, Wednesday, and Friday so our son knew what was coming. The answer was a quick “nope”. It was explained to us that the therapists have a lot of kids to see and they will “push in” whenever they have time.

No matter what Brandon was doing, when the therapist showed up, he was expected to stop whatever he was working on, transition to the therapy in a corner of the room, and work with the therapist for 20-30 minutes. If he was eating lunch, they would stop him and direct him to the therapist. We were bothered by this, but felt we had no other options for Brandon.

Then we heard about the Special School District in our county. We started researching what they had to offer and felt this may be a viable option for Brandon. We took a tour of the elementary school in our area and talked with other parents who chose for their kiddos to attend this school. Everything was very positive. Yes, therapies are done on a schedule. Yes, there are private areas for therapies. Yes, the classroom size was smaller. Yes, there are paraprofessionals in every room. Yes yes yes!

I excitedly told my work friends what we were thinking about for Brandon. I had worked with adults with developmental disabilities for 20 years and knew they would be happy for us. There were some that were not.

Upper management heard about Steve and I considering a change of schools for Brandon. I was called into the office and asked about it. I explained why we were looking at this option. I was then told how horrible it would be for Brandon. That my husband and I were not considering that we were isolating him from the world. That I did not understand what folks with disabilities need. I was also told to keep this to myself as it did not fit with their vision of inclusion.

I had a great deal of respect for this group until that moment. They weren’t listening. I was told that Brandon deserved better than what we were considering. They told me Steve and I were “absolutely wrong” to even consider other options for Brandon’s education.

My problem with that? They never met Brandon. They never offered any suggestions on how to make it better. They never asked if we needed any help. What they did offer was a lot of judgement.

Ultimately, we did decide for Brandon to attend the self contained school. There was almost an immediate improvement in his behavior. It wasn’t perfect every day, but it was significantly better.

There were schedules. There were routines. There were different rooms for therapies. There was a learning area set up like a kitchen to help him learn some kitchen, eating, and table skills. And he was with his peers. He was no longer isolated from his schoolmates!

We have made choices for Brandon that did not turn out as well as we hoped.

As Brandon prepares to graduate this spring, we know in our hearts this was one of the best decisions we ever made for him.

Remember, we parents know our children best. What works for one does not always work for all.

Winter Break

December 27, 2019

It is now two days after Christmas. My house is still a bit of a mess, but Christmas 2019 is in the books. We had a wonderful day here at home. Presents were opened, although Brandon chooses to open his very, very slowly and finished about 3 hours after the rest of us. Our friends, Rick and Mike, joined us for good food and visiting. Our Christmas evening was quiet and fairly mellow. I went to bed at 9:30…that is the earliest I have gone to bed in months.

And now we are in the middle of winter break from school. Brandon is home from school for 2 1/2 weeks. For someone who really likes structure and routine, Brandon is not always happy during school breaks. It is hard to schedule everything when there are five of us living in this house. One thing we do schedule is when we talk about when Lorie, Brandon’s support worker, is coming.

Along with autism, Brandon has OCD. He gets “stuck” sometimes. His current obsession is when Lorie is coming to take him to Cabela’s. He wants to talk about it constantly. As in every 30 seconds. It is exhausting. And he seemed to want to talk to only me about it. Not Steve. Not his brothers. Me. All. The. Time.

After some crying and complete frustration, I remembered that I do have a timer on my phone. I started with 5 minutes and would ignore any attempts to talk about Lorie and Cabela’s until we heard the magical timer noise. We are up to about 20 minutes, although I do switch it up occasionally and only make him wait 10 minutes. I am always amazed that it doesn’t matter where he is in the house, he hears the magical noise that means we can talk about Lorie.

My timer has provided just a little bit of structure to a chaotic time for Brandon. And that makes all of our lives just a tad bit easier.

Happy Holidays!

IEP Survival Guide

Let’s talk about IEPs.  I have a unique perspective on these meetings that are required and tend to be quite stress producing for us parents.  After I graduated college, I began my professional life working with adults with developmental disabilities.  I have led hundreds of plan meetings as the professional.  I have interacted with parents and family members as the professional. 

When I met Steve, Brandon was 5 years old and was starting kindergarten.  When his IEP rolled around, Steve asked me to come with him.  Of course, I said yes.  Walking into that meeting as Steve’s fiancé was much different than walking into a meeting as the professional.  There were 9-10 people sitting around a table because all the therapists and teachers must be there.  It was intimidating and a bit unnerving.  I finally understood parents stress and anxiety before the IEP meeting (this also made me better at my job). 

Steve and I were talking last night about IEPs and came up with a list of 5 things we think every parent should know before walking into that meeting.

Steve and I like this one!

You Know Your Child Best

Remember that you know your child best.  While we have been blessed with many wonderful teachers, therapists, and paras, we still know our child best.  Don’t just assume that everyone in the room has your child’s best interest at heart.  Most of the folks at school do.  But there may very well be some that don’t. 

I remember sitting in an IEP meeting a few years ago and one of the therapists said she didn’t really care what was happening at home.  She was focused on what happens at school.  This was in response to asking for the therapists to send something home describing what they did with Brandon.  I thought it would help us talk with Brandon about his day.  Nope, she was too busy and didn’t have time for that.  I do believe I cried at that meeting.  I just wanted help with talking with Brandon about his day.

Paraprofessionals

Always request at least one of the paraprofessionals who work with your child to attend the meeting.  The paras are with their students more than anyone else at school.  They are the ones walking with them to the bathroom, supporting them in the lunchroom, swinging with them on the playground, helping get them on/off the bus. 

The paras bring a whole different perspective to an IEP meeting.  One of Brandon’s paras from years ago told me about Brandon’s first girlfriend.  Her name was Holly and they were in first grade together.  The para told me how Brandon would watch her on the playground and if anyone else got close to her, Brandon would step between them.  He loved to sit by Holly at lunch.  They were buddies.  Brandon would talk about Holly at home, but I had no idea who she was.  I asked the teacher, who asked the para and the para is the one who had the inside scoop.

Ask Questions

Ask as many questions as you want.  One of the more frustrating things for Steve at IEP meetings was the use of acronyms for almost everything.  Working with adults with disabilities, I knew what all the letters meant.  Here’s a small list of acronyms that I hear a lot:

                IDEA – Individuals with Disabilities Education Act

                IEP – Individulized Education Plan

                OT/PT – Occupational therapist/physical therapist

                SLP – Speech language pathologist

                ABA – Applied Behavioral Analysis

                ESY – Extended School year

                FBA – Functional Behavioral Analysis

And the list goes on and on and on.  Poor Steve, he had no idea what some of these meant.  We spent a couple of years with him whispering to me “what?” and me explaining what it meant.  We also decided at some point that Steve should be asking the teachers/therapists what they are talking about.  I do not believe teachers and therapists do this intentionally.  It’s just the language of social work.  But sometimes, they do need reminders that not all parents understand the jargon. 

I would also encourage anyone to ask questions about the goals that are set, because these are set in stone (not quite stone, but they are hard to get changed once they are in print).  One of the best pieces of advice I ever received when I was working was about goals.  This person said to me “yes, we have to have goals, but they don’t have to be stupid goals”.  Exactly!!! 

The school worked with Brandon for five years on learning to tie his shoes.  After the second year, we asked that it be stopped.  They argued with us about this for three more years.  We were told he was making progress and that is all that is needed to continue the goal.  Except he was not making progress.  It didn’t start as a stupid goal, but after five years, it was a stupid goal.  Brandon still doesn’t know how to tie his shoes.  He has adapted.

Take Notes

Make sure to take notes and hold people accountable for anything incorrect or missing in the final IEP.  Here in Missouri, parents are not required to sign the annual IEP.  I wish we were, but at least we get noted that we attended.  If there are things in the IEP that were not discussed and you don’t understand, ask questions. 

After one IEP, I received the “final” copy in the mail.  While reviewing it I noticed that number of ABA hours were reduced.  That had definitely not been discussed in the meeting.  I called the teacher, she was aware of the reduction in hours, but had forgot to tell us.  How do you forget to tell the parents?  That didn’t work well for me and Brandon got his hours back.  And I got an updated “final” copy.

Have Supports With You

Take supports with you if you feel it is needed. We have done this a couple of times when we felt we needed extra help.  IEP meetings can be tense and sometimes, quite emotional.  It is hard hearing everyone talk about what my child can’t do with little mention of what he can do.  That has changed over the years, which is a good thing!

Having an advocate with us really, really helped when we were trying to get ABA services for Brandon.  The ABA therapist at the school was very uninterested in providing ABA services to Brandon.  She told us how she was overworked and had too many students already to deal with.  We were not quite sure how to push this issue without yelling at people (they do frown on yelling at the IEP meeting).  The advocate was able to communicate our wishes way more politely than I was and we got what we wanted for Brandon.

After the meeting?  De-stress, have a glass of wine and relax a bit.  You deserve it!

What About School???

They grow up.  They become adults.  And they still have autism.  Our son, Brandon, will always have a diagnosis of autism.  His age will not change that.  Next year will be his last year in school.  Brandon can stay in school until he is 21. Thankfully, they don’t kick him out on his birthday.  He can finish the school year. 

Brandon’s experience with school is nothing like our other sons experience.  Where did we start? How in the world is it that next year is his last year?  It has flown by.

Where did we start?

Brandon started kindergarten at one of our public elementary schools.  But not the one that is about 200 yards from our house.  This is where our other sons went to elementary school.  Brandon, however, had to go to a school that is 4 miles from our home.  And that’s four miles as the crow flies.  It can be a 15-20 minute drive, depending on traffic.  Why did he have to go to a different school that his brothers?  Because, at that time, Brandon’s school was the only one that could support kids with autism.

While at this school, Brandon was “main streamed” in different classes, but always with a paraprofessional, which is a much better title than “aide”.  The paras work hard with our kids every day.  At first, he was in a “regular” music class, art class, and PE class.  They pulled him from art class when he was in first grade.  At the beginning of second grade, they pulled him from the music class because he was becoming a “disruption”.  He would stand up and dance around the room.  They told us he wasn’t learning anything.  At his IEP during second grade, they announced they were now pulling Brandon from PE.  The reason for this?  Brandon doesn’t understand the rules of the games and would not participate.  Isn’t it their job to teach the kids the rules to the game in a way they can understand?

So here we were.  He was no longer being mainstreamed into any classes.  He had to stay in his little classroom with 7-8 other kids his age who also had disabilities.  Therapists came into the room to do their therapies.  I asked why there wasn’t a separate area where this could be done one on one.  I was told it just wasn’t possible. 

There was also no real schedule for Brandon’s therapies.  The therapists would “push in” the classroom when they had time.  Some weeks, the OT would come on Tuesday and Wednesday, the next week, it could be Monday and Friday.  My son likes routine and they were not able to make a schedule with the therapists. If Brandon was in the middle of something and the therapist walked in the room, Brandon had to stop what he was doing to meet with her.  It was like the classroom was being controlled by the therapists schedules.

What do we do now?

Steve and I knew there were self contained schools for children with developmental disabilities in our public school system.  All of the students have developmental disabilities.  We also knew there was (and still is) controversy about sending a child with disabilities to these self contained schools.  When we brought the subject of sending Brandon to the self contained school with the IEP team, they seemed a bit shocked.  Why would we do that?  He is doing well here.  Why would you not want him to be with the “normal” kids?

At that point, I may have used my very stern voice to remind all of them that Brandon was not with the “normal” kids.  That he was in a small classroom all day long with no real exposure to the “normal” kids.  Every class they were mainstreaming him into was no longer an option.  Their response was that Brandon eats lunch with the other kids his age.  That was it.  That was their answer.  Steve and I were angry, confused, hurt, and sad.

We requested he be transferred to the self contained school.  I sometimes wonder if they didn’t approve the move just to get rid of me.  LOL!

What happened?

Brandon started his new school at the beginning of third grade.  The difference was like night and day.  There were schedules for therapists, there were private rooms for therapists, there was more than one para, there was a playground that was adapted so all the kids could play.  They were not only teaching Brandon the typical curriculum of math, science, and reading, they were also teaching life skills.  They worked with him on handwashing, toothbrushing (which he still doesn’t do independently and he hates it), how to eat lunch without taking something off of someone else’s plate, and on and on. 

They are interested in what was going on at home.  There was (and still is) a lot of communication between us and the folks at school.  They understand that a less than stellar day at school may affect our evening at home.  And we let them know if Brandon had a bad morning, so they are prepared when he arrived.  That didn’t happen before. 

Brandon attended this school through eighth grade.  Then he went to high school!  It is a self contained high school and Brandon loves it!  He has flourished and has learned so many new skills.  I remember sitting in his IEP meeting and his teacher telling me that Brandon likes vacuuming the floor.  Hmmm…how can I make that work for me here at home?  Nope, no interest in doing that at home.  But he will help me with laundry, which they work on with him at school.  He will also help with dishes and he also does this at school.  That type of skill building is not done at our local high school.

While there have been challenges along the way, we have been so very happy with our choice.  And Brandon is, too.  I received criticism from some who feel that our decision was isolating for Brandon and how could we do something so cruel.  I was told that I could no longer call myself an advocate for those with autism if I didn’t understand the need for mainstreaming. 

I try not judge the choices other parents of children with disabilities make.  I am not living their life.  I do not know their child as well as I know my own.  I am neither pro or anti mainstreaming.  We are doing what is right for OUR child. And our decision is what was right for our child.

Spring Break 2019

Spring break 2019 is in the books.  It is done.  It is over.  It is finished.  From this tired autism mom, I say WOO HOO!!!!!!

The last day of school before spring break is a fun time for the students at Brandon’s school.  They had a talent show on that day.  I had to miss this as I was wandering around the Garden District in New Orleans on that day. His teacher did send me this picture and I love it!  Not sure if Brandon loved it, but I sure do.

               

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Overall, it was a good week.  Brandon and our youngest son, J, were both home from school this past week.  It was a week of laziness for J and, I must admit, for me, too.  At least the first couple of days.  I arrived home from my girls trip early Sunday evening after a very long drive from New Orleans.  Hindsight being 20/20, planning the trip the week before spring break may not have been the best decision.  My almost 50 year old body was tired.  And I needed time to recuperate. 

But we made it!!  Brandon’s support worker worked with Brandon three days during the week.  They went to the zoo (Brandon loves animals), the Science Center, and Cabela’s (the stuffed animals are his favorite…and their jelly beans).  The weather is getting warmer and walks in the park were taken.

Brandon and I did things together, too.  He helped me fold the 8 baskets of laundry that were waiting for me.  To be fair, I do NOT like anyone else folding the laundry.  They all do it wrong. LOL!  But Brandon likes to help sort the socks and then fold them together.  He helped with dishes.  This is not a chore he loves, but he will do it.  We went to the local quick stop store where everyone knows him.  They always encourage him to practice his social skills when making purchases (saying thank you, handing the money to the cashier, etc.)  They are very patient and kind with him.

He was able to be outside more to enjoy his swing and running across the back yard.  We actually saw the sun a few times!  Oh how we have missed the sun!  Brandon likes to be outside and spring arriving is a great thing in our house.  That also means baseball season is almost here and Brandon does like to cheer on his Cardinals.

He slept in!  Almost every day of break!  This is new.  Most school breaks don’t really affect his sleep patterns.  He is usually up at 6:30am every day regardless of when he went to sleep.  Which means I am up at 6:30 every day.  I am a night owl by nature, so this has been challenging for me over the years.  But this past week…he slept in!  One morning, he woke up at 10:30am.  I was actually awake before him.  That so rarely happens!  It was glorious! 

Brandon has much more down time when home on break.  It is difficult for us to structure his time like they do at school.  We have 5 people living in our house with 2 dogs and 1 cat. The schedules get a bit crazy at times.  We do our best to schedule some things Brandon likes, but it can get challenging with so many different schedules in one house.

Brandon’s obsession with Mario Kart (read all about that here) increased a bit during the week.  But there was no hitting and only a few tantrums with jumping that shakes the whole house.  At one point, Brandon was trying to get very close to Steve’s face to say Mario Kart over and over.  Steve put his arm out and Brandon placed his forehead in Steve’s hand and pushed.  Sometimes, we forget to ask Brandon if he needs squeezes or deep pressure.  This simple action helped calm him down and reminded us to remember that Brandon does need deep pressure at times. 

               

He also began saying “Woo Hoo spring break no school” while throwing his arms in the air.  This was repeated many times throughout the day and nights of spring break.  On Friday, we started reminding him that he did have to go back to school.  Three wake ups, then two wake ups and finally one wake up.  Today!!  School!!  Preparing him for this change back to school is important so he knows what is coming.

This morning, I went into his room to wake him up.  He woke up a bit more quickly than normal.  He got dressed with only 3 reminders to “get your clothes on, man”, and we were sitting on the couch together when the bus arrived.  As he walked out to get on the bus, he looked straight at me and said “play Mario Kart”.  I ignored him, waved to the bus driver, and said “We missed you!”  She laughed and said I wasn’t the first parent who had said that to her today. 

Steve had a conversation with Brandon last night that went something like this:

                Steve:  Are you ready to go back to school?

                Brandon: Yes.

                Steve: Who are you ready to see?

                Brandon:  Jason

                Steve:  Is he your best friend at school?

                Brandon:  No.

                Steve:  Who is your best friend at school?

                Brandon:  Bus.

We laughed a lot about this conversation.  We know from his teachers that he likes leaving school at the end of the day.  Our best friend at his school is probably the bus, too.  We like that it takes him TO school to his wonderful teachers and therapists.  We also like that it brings him home safely every day.