Tyler goes to Fifth Grade

Over the last week Tyler has been rather ho hummy about going back to school. This was a first for him. He's usually so excited to go back. Then as it neared even closer he began going back and forth between statements such as, "I think we need eight more years of summer" and "I'm ready!!" Last night he wasn't so ready again.

As he was getting into the shower he asked me to remind him to put deodorant on in the morning, because he knew I'd be up there singing in the morning. Traditionally my husband's mother would sing to him on the first day of school. We've adapted the tradition and sing to them every Monday morning.

School Days, School Days, WONDERFUL WONDERFUL, School Days, School Days. There's reading and writing and a-rith-me-tic. It's enough to make youuu SICKKKK!

Six am came mighty early for me this morning. Per usual I woke up in the middle of the night. WIDE awake. No going back to sleep. Also per usual, I was beginning to get tired again long about the time the alarm went off. The Hubs got up and went up stairs to get Blonde Eyes. He sang to her. She threw things at him. He continued singing.

I laid in bed till the alarm went off again fifteen minutes later. I found Tyler sitting at the table eating a bowl of cereal. HEY! I thought I was suppose to come sing to you. WHY are you down here? He proclaimed that he just woke up early. Fine, Fine. Blonde Eyes announces that she is really too old to be sang to in such a fashion. *busts out my best obnoxious singing voice* Blonde Eyes took this as her queue to leave. Tyler sat patiently eating his cereal and listening to me. Tradition is tradition is tradition.

I had bought Tyler a lunch kit that came with 4 containers that hook together and an icepack that also connects to them. I prepacked Tyler's lunch last night. His left over chicken strips, baby carrots, baby tomatoes, mixed fruit (in juice NOT syrup). I got up this morning and put the ice pack in between the containers and grabbed him a juice pouch. Wrote him a note and stuck it inside his lunchbox. Tyler then asks what could he take for snack? 

M - What makes you think fifth graders get snacks?!
T - Well, I could take a snack and ask when we get there. If she says no... you could take it back.

So, I let him grab a bag of pretzels. He fills up his water bottle. I grabbed some of the special paper that they started having him write on last year.

Waiting for Grandma. It was REALLY bright outside. Tyler did NOT like facing the sun for this picture.

Tyler had insisted that he ALWAYS gets a ride the first day of school so Grandma came and picked us up. (For those who do not know, I do not drive and am perfectly fine walking.) I had told Tyler he could sit up front so he could chat with Grandma on the way to school. She told him since it was the first day of school, and with him having a game this afternoon that she decided to work from home. She offered to pick him up if he'd like. SCORE!! His dreams are all falling into place.

We get to his class, and his teacher is standing at the door with a cup of popsicle sticks. On them she has written the names of colleges that coincide with college stickers on the desks. This is her method of seating. Tyler picks the stick for South Alabama. This happens to have been the school the teacher went to. Which makes him elated until he notices other college options that he missed out on.

He sits his bag down on his chair and starts pulling out his stuff. He get's his coveted Trapper Keeper out. He begins telling a boy about his BRAND NEW JUST GOT IT SATURDAY backpack. The boy says, I'm just using the same one I used last year. Oh, that's sad. It's going to break... 

He finds the bag of pretzels and rushes over to ask if fifth graders still get to have snacks. He runs back hollering about snack and stuffs his pretzels in his desk. I showed the teacher the special paper and explained to her how Tyler has some real handwriting problems, and how to combat that he needs reminders to write neatly and slowly. Also this is some special paper they started having him use last year that I will leave with him but they said you can just get it from the handwriting specialist. She said awesome and that she would pass that info along to his Language Arts teacher.

We get his box of supplies that we ordered from the school and set them on his desk. Tyler then asks the teacher if he opens it now or later. She told him that they would open them after specials so for now just set the supplies on your desk. 

Specials? Specials? When are we going to specials? 
8:50. 
EIGHT FIFTY?!?! REALLLYY?! 
Yup. 
What special do we have today? 
We have... *turns and points to a specials schedule on the wall* 
P.E.?!?! First day of school and we have P.E.?!

At this moment I am quite certain that the Heavens have opened up and have poured their blessings down upon Tyler. You could almost see the artificial lighting honing in to encircle him in an exclamation of the universe coming together JUST for him. I think it's safe to say that today, at the very least, will be ok for him.

Tyler & his primary teacher. By the way, he likes her because she's probably the tallest teacher in the school.

Dancing the Cha Cha of Summertime Regression.

Several years ago when I first got the school to finally accept Tyler's autism classification, and they placed him into the special education program so he could receive social services, they told me they didn't expect him to need services for long as well as expected little to no regression during the summer months. They were still looking at Tyler with their eyes closed. Now they don't even mention such things. Summer months aren't viewed as their problem. Which, one would think, that with just a single brain cell firing off that you'd be able to realize the correlation between regression in the summer months and the child you will HAVE to deal with when school starts again.

Too high functioning to regress? I don't think so. Tyler is high functioning, BUT he is also not as high functioning as people on the outside looking in think he is. Regardless, there is no such thing as being so high functioning that regression isn't possible. Regression happens all the time. And only those who care notice. Or those oblivious strangers who look at you like they want to know WHY you're a parent because clearly you suck at it.

What is regression? Regression is the ultimate two steps forward three steps back. It's the dance between advancement and going nowhere. It's all the hard labors of the dedicated being thrown to the winds. It's everything that every caretaker of someone with any kind of special need fears. For all that hard work, now gone, there is even harder work to do to get back on track.

What causes regression? Anything can cause regression. Most noticeably, in this instance, it is the change of their schedule. Whether they like their schedule or not, which at some point the maturity of those who need a schedule come to love their schedule, their schedule has been fine tuned to fit their needs. The schedule makers have taken much time in listening to the person, both their communication and the things left unsaid that can only be heard through trial and error. We fine tune it constantly. As they grow and their needs change, as their personality changes, as they learn to adapt to things on their own. The schedule evolves. However, there are things like school that takes place for most of the year, and then suddenly it's gone. Throw in other various changes that take place during the summer months and you're just asking for regression to pay you a visit.

Tyler is the product of divorce. Change surrounds him. Prolonged exposure to a different environment where the sounds, smells, rules, and everything in between are different. He's completely happy visiting, but he's not a pro self advocate yet. He hasn't learned entirely how to listen to what his body is telling him. He doesn't know what it means. He can't yet associate the cause to the effect.

What does regression look like? It's different for all, but for Tyler it looks like more verbal stimming than usual, less use of words, talking even louder than usual, above and beyond the normal sensitives, and a zero tolerance policy of  laughing or joking around. After being gone for two weeks Tyler came home. We did all kinds of things with him since he hadn't been around and also because it was his birthday weekend. We went to a special event at the zoo. We'd ask him, Tyler, do you want to go here or here, and he'd just turn around and walk in the direction of one of them. Tyler hadn't been so wandery and verbally non responsive since kindergarten maybe first grade. 

He wanted me to cut his hair, Tyler cannot stand for his hair to touch his face...especially around the ears. He cried while I cut his hair. He complained about the noise and the vibrating of the clippers. He would cry out OWE!! and then sob uncontrollably. I finally had to stop and tell him there was no way I could cut his hair like this. He insisted that I had to cut his hair. He wrangled it in, but he continued to softly cry and complain. I can't tell you when Tyler was last like this. It's been so long.

At baseball practice they were running some laps. Tyler hadn't been there since they had started working on this so he wasn't conditioned like the other kids were and it was different than what he expected. He wasn't very happy with the situation. He struggled with it. It's a good team though, and the children and coaches alike all support each other. One of the coaches forgot that Tyler doesn't like for people to touch him, especially from behind and touching him on the back, back of the neck, and the shoulder area. He came up behind Tyler and patted him on the back and tried to give him some encouragement. Typically Tyler would have just shrugged himself from under the persons hand and not said anything. This time however, Tyler shrugged himself loose of the mans hand and began screaming.

Tyler left for another week, and has since come back home. He'll now be able to get settled back into his schedule as we prepare to go back to school. Since he has been back he makes all kinds of verbal stims. Odd noises and strange combinations of letter sounds. Very repetitive. If someone laughs he mutters in a very dark tone, It's not funny. The usual literalness has become extreme. There are no allowances.

 What can be done about regression? All that you can do is keep going. Put things back to what passes for normal. Hold tight. The waters will be stormy, but all storms pass in time. Day by day Tyler is calming down. Just a few more weeks and school will start. Once that happens, all the fighting with school will start again, but Tyler's routine will be complete.

Why don't others understand? Quite simply, it's not their life. You can't fault them for not having to live the life of autism, or any other special need. Some of it with some people is willful ignorance. They don't want to know. Others likely believe it's not as bad as you think it is. Regardless, it's not their life. They have no desire to walk in your shoes. Can you really blame them for that? Most people don't sign up for this life because of the great perks that come with the job. I am ok with the job solely because I recognize myself in Tyler. But anyone who doesn't have to live with a special needs child 24/7.... One can't blame them for not getting it. It's hard and complicated, it takes that 24/7 status to even have a chance at understanding your child. And like in most things, many people like the easy button.

Change the beat of the dance. Regression is always possible. No matter how high functioning. No matter how old. Regression is regression and it is always in the wings waiting. Two steps forward and three steps back? Add in another step. Two steps forward, three steps back, four steps forward, cha cha cha. Hope is never lost for good unless you lose it and then don't even bother looking for it. Regression can be heartbreaking. However, if you lose hope there will be no one to lead your child back. YOU are your child's dance partner. It is YOUR job to lead them in this dance. Teach them the steps, until they are capable of dancing on their own.