Saturday, May 27, 2017

Eight Years

The first morning of preschool wrecked me. His adoption and homecoming had only been 23 months earlier. That may seem like a lifetime to some, but to me it flew. Three weeks after he came home my calendar exploded into a slew of appointments every week. His diagnoses came, as did the visceral effort to give him everything he needed. It was like a run away festival ride and I was hanging on for dear life. He needed so much and we were moving at warp speed. I giggle at myself as back then he only held cerebral palsy, failure to thrive, and deafness as his diagnoses.

We lived in a different school district and had done extensive research as to what AJ would need. We decided to advocate for AJ to go to a different school in a different district. The other school had a preschool program with kids with hearing loss who were choosing  to hear via technology (cochlear implants or hearing aides) and use spoken language.

We walked into his first IEP meeting with binders for each of the thirteen people present.. We had been encouraged to make a pamphlet or information packet about AJ so that staff would know who we were having this IEP for, That meeting rocked us to our core. It went on for hours without any resolve. The meeting was a bit more stressed then a typical first IEP as we came out swinging for him him to go somewhere else. Our home district did not understand hearing loss or what AJ needed. It was our first taste of truly fighting for what AJ needed. Looking back, I'm glad we walked into that initial fire. The experience taught us well.

After two more rounds of meetings AJ was approved to attend this preschool program for DHH (deaf hard of hearing) students. We walked him into the classroom on the first day and he settled in. Looking back, he was just a baby. He was wearing infant clothes and much smaller than his peers. MUCH. He had just had his first cochlear implant activated four months earlier. He had only been hearing for four months. He had just started walking a few months earlier.

First Day of Preschool

I walked out of the building and walked to my car. Sobbing. A full on sob that nothing will stop and that a hug would have made worse. One of those. I had no idea what to do with myself.

I can't remember what I did that day. His preschool program was only 2.5 hours long, so for the two years he attended that program I stayed in town. I went to the library and wrote, went to Target, and sat in parking lots. The almost hour drive home and back wasn't worth it.  His teachers worked TIRELESSLY to understand him. They brought in every resource they could and gave him the support he needed.

His second year of preschool was a doozie. That fall AJ had a seizure in the car on the way to school and was diagnosed with epilepsy. I remember the morning after clear as a bell. His teacher greeted me at the door, gave me a mommy to mommy hug and asked if there was anything I needed. I, of course, said no. When it comes to AJ, I do what he needs first and process the emotions later. But I have never forgetten her kindess. This was also then year he received his second cochlear implant. His class made cards for him, which his teachers brought to his hospital room when they visited post-surgery. Jeremy was diagnosed with MS a few days before the end of the school year. AJ's staff was incredibly understanding as we navigated tests and appointments and treatments. They encouraged us to attend the zoo field trip in the midst of all this chaos because even though we didn't know we needed it, they did. It gave us great comfort that AJ was being well-cared for. Yes I said well-cared for.

The last day of preschool brought a picnic lunch and playtime at the neighborhood park. His first teacher was leaving that summer and I'll never forget the conversation we had at the picnic table. It was beyond encouraging to our little family

That summer we sold our house and moved into the district AJ was attending. We wanted to keep him enrolled there, but our home district wanted AJ to attend kindergarten in our home district. I don't think so. It was not rare for families to move into this district for this DHH program. It is beyond cool to see these kiddos grow up together and see sprinkles of cochlear implants in each grade level. I was terrified of how he'd do with the move, and as he usually does, he surprised us and handled it like a champ.


It had become clear throughout AJ's preschool years that AJ was not developing speech. Because of his late access to sound everyone wanted to give him time to catch-up. It was clear something else was at play here. His speech therapist quickly became the master of improv and thinking out of the box when it came to AJ. She was gentle although factual in her delivery when sharing his progress with us. We had started using PECS, which he was very successful using. Over the summer she talked to me about an iPad. She really felt he was ready to take the next step. I was resistant. I felt like this was permanent and sad. Basically I had all the wrong feelings about it.

Because the iPad became AJ's voice.

We were able to obtain an iPad for AJ through funding he qualified for through our county. One morning his speech therapist, kindergarten teacher, and I all sat around a circular table with this iPad. iPads were rather new at that time and his speech therapist was far beyond the teacher and I understanding how it worked. We had also gotten a very expensive communication app for this iPad. We quickly realized it was the wrong choice for AJ and chose a different communication app called iCommunicate. A lot of communication apps use stick figure images and rather cartoon pictures for the images of objects. It became clear right away that AJ responds to real pictures. We took pictures of everything. It's hard for me to remember where we started, because the way AJ communicates with it now blows my mind.

Kindergarten was also the year congitive disability was added to his IEP. This was also the first year that it was difficult for him to spend time in the regular education classroom. He spent most of his time in his DHH teacher's room and then a small amount of time in the special education room. I had an extremely hard time with this. I don't know why. I suppose it is obvious. His kindergarten teacher was gracious to include him in as much as possible.

First Grade

First grade brought welcome changes, a new special education teacher, and programming for AJ. Second grade brought more change and the introduction to a communication method called RPM (Rapid Prompting Method). I remember sitting in the car in front of my mom's condo listening to his teacher tell me she used RPM for the first time and my boy knew his shapes and colors. I sobbed when I hung up.

It's all inside of him, he just can't get it out.

Second Grade

Second grade brought the creation of a resource room. This was an awesome space for sensory exploration. His therapists rocked the path to making that space possible. This was also the year we began using a different communication app for AJ called Go Talk Now. This app was much more user-friendly. In the past we had used more of a picture schedule where he could swipe and see what he was doing next, as well as choose pictures from a glossary of photos, but it really wasn't functional beyond that. This allowed him to make choices and opened the door for multiple layers of boards to be made and expand as his use expanded. It's beyond awesome. Second grade also began the expansion of our family as we began the process of adoption again.

Third Grade

Third grade was by far the worst year we've ever had. I really can't sugarcoat it. The school's direction changed to "full inclusion" and the results were devastating. It was not appropriate for AJ to be in the regular education classroom. Special education classrooms were made obsolete and AJ was isolated without any peers present. It was a cold, windowless room that was given the title "breakout room". With the exception of gym, art, and music, they moved every single environment he was used to to a different room or location in the school. He endured five staff changes that year. His behavior spiraled out of control, he refused to comply at school, and stopped wearing his cochlear implants.

We brought his sister home that December and I still feel a twinge guilty for not realizing what was going on sooner. We consulted AJ's neurologist about his behaviors. He shared that AJ has no executive function (doesn't understand right/wrong or what is safe/unsafe) and also has little to no impulse control. A light bulb went off in our heads. It made so much sense. We sought out a psychologist and were referred to a psychiatrist. We were determined to get to the bottom of what was happening. It is a bit disheartening when a psychiatrist stares at your child and says, "I don't know." By the time we figured all of this out it felt very too little, too late.

Third grade was the year that forever changed me as a special needs parent and advocate. It hardened me a bit. I'm leaving out a lot, but know we fought. Hard.

Fourth grade began with all of the puzzle pieces moved back into the right places. AJ once again had a special education classroom to call home. His lead teacher just understood him and continuously thought outside the box. His RPM use exploded and he was learning! This was the year he learned to jump independently and ride a bike! It was a year of building him back up from the disaster the year before. It was his staff working tirelessly to essentially re-train him to wear his implants at school and calm his behaviors. It was the year of getting him back in the saddle and riding once again.

Fifth grade has been like riding a bike. His team knows him, he knows his team. He knows his classroom, his peers, and his routine. He can tell time and has a reading comprehension of a first grader. This from the boy who was the subject of a conversation with a neurologist who said, "This is about as good as he's going to do in life." Whatever man. You don't know our AJ.

He had surgery this year and his staff has asked all the questions and done all things to support him like a rock star. They don't blink at my ridiculously long emails, updates, and constant information. They are kind and have a smile on their faces when I drop the kids off late because AJ didn't eat, or sleep well, or his body doesn't want to cooperate, or he had seizures. They compliment my outfit even though I forgot to brush my hair and threw on whatever because life with AJ is so different and unhinged. They offer me hugs when I pull up in tears, to which I say no to, because it will make me cry harder. But still they offer. They always tell us we "don't have to do that". We do. They always say, "Let us know if you need anything."

Teacher appreciation week was a few weeks ago and it stopped me in my tracks. Usually I'm one of those that goes above and beyond, because HAVE YOU READ EVERYTHING ABOVE? 

But this year I couldn't think of anything that would come close to our level of gratitude for these people. AJ is not a cookie-cutter student. We are those parents. The ones who are not quiet when fighting for what AJ needs. After all this time, they still like us.

No coffee card, cupcake, or gift is going to accurately convey our love for these people. 

We had AJ's last IEP for elementary school last week and I managed to cry all my tears before and after the meeting. We watched as his staff relayed our son's present levels to his new middle school staff and then turned their thoughts to how they've been with him for eight years, how special he is, and how they would go to the ends of the earth to help our boy.

How do you say thank you for that?

Eight years we've been at the same school. 

AJ has had:

17 teachers
11 aides
1 speech therapist
2 physical therapists
2 occupational therapists
1 gym teacher
2 music teachers
2 art teachers
2 consultants
2 very involved administrators
5 principals

The magnitude of that is staggering. Kids like AJ don't do well with transition, and his performance reflects that. It doesn't mean we don't push him, it doesn't mean we don't stretch him, it doesn't mean we keep things static. But in his world, routine is comfort. I have no idea how he will react to this transition to middle school. He rocked our move, so I know better than to short change him in this department. But a whole new team and a whole new building will be difficult for him. Not everyone understands our son. Thanks to his current team, we are as prepared as possible. 

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