An Long Update from the Spectrum

It has almost been 4 years since J was given the official diagnosis of being on the Autism Spectrum.  It has been over 5 years since he started all his therapies.  At first it was developmental and speech therapy and then a few months later we added in occupational therapy.  I had no idea what DT or OT were before we started them and I have learned so much in the last 5 years.  It has opened my mind and heart to so many things and so many  people.


Our therapists we see/saw on a weekly basis.  We became close!  It was sad when J aged out of EI and therefore DT.  Our therapist was a life line for me for over a year.  Luckily when he aged out of EI we were able to get insurance to cover speech therapy (apparently they think it is experimental so there was a fight) and keep our speech therapist.  We were with Kimber from the time Joel was 2 until he was 6.  For many years we saw her weekly and then every other week.  She knew C from the time she was only a few month old and knew I was pregnant with D before I had even told my family.  And she was a huge advocate for Joel and helped us get testing for Autism and pushed an OT evaluation, she brought him from not speaking to talking too much.  Then Joel started first grade and we were no longer to get to speech during the hours Kimber was there and we switched to a new therapist (she is wonderful too).  I think it was harder for me to say goodbye to Kimber than it was for Joel, in my defense I don't think he totally comprehended it.  A year before that we had to say goodbye to our OT who left to take another job.  We also had seen her every week for 1 hour for several years.  She gave us our sleep cd which helps J sleep and therefore the rest of us too.  Along with so many other ideas that have shaped our household.  She made Joel work hard and therefore she wasn't Joel's favorite person.  I however appreciated her no nonsense attitude with J and the fact that she made him work.  She knew he needed it and she wasn't going to let J charm his way out of it.  Again we have a new OT at the same clinic and she is wonderful too.


These days we are only in there once a week. Back in the beginning we were there twice a week during the day.  For the most part parents stay in the small lobby.  I did my best at entertaining C and then also D with the toys and books in the lobby.  You would see the same kids every week, many not as well off as J and you got an appreciation for your own situation.  I would make small talk with some of the parents and got to know a couple pretty well.  But the kids were usually happy and friendly and everyone was so excepting.  It was fun to see the progress some of the kids made over the years.  I saw a couple kids go from not being able to walk to using a walker to walking on their own.  Now there are no toys in the lobby because of illnesses that were getting passed around, and we go after school and I usually have 1-2 kids sleeping in the car.  We sit and wait in the car for Joel when it is cold or play on the hill next to the parking lot when it is nice out.  In the fall the school band practices in the field next to the building so we get some entertainment.


Joel has progressed greatly and is considered high functioning which is great.  It also means when he just looks more like a normal kid, but he isn't, he is different.  C and V know J goes to therapy and they never really question it anymore.  They have been told J needs help talking years ago and never asked since.  We have explained to V that J's brain thinks differently and mentally V gets it, but on a daily basis it doesn't even register.  If someone talks about Autism he remembers or once they were at a summer school thing and J was asked to write something and V promptly told the teacher "J isn't good at writing because he has Autism so he was going to need help."  We have tried to explain to C that everything J does is not a good thing to do, so don't always do what J does.  She asked why and I tried to tell her J's brain thinks different and she responds with "so does mine!"  We have gotten no where.  I stopped trying.  Someday she will understand and maybe someday she won't but either way she loves her brother and wants to be like him.  D is too young to care.  He loves J and wants to play with him because he is the cool older brother.  Actually everyone in our house loves playing with J, he is by far the most popular of the siblings.


We have made some major gains with Joel in the last year.  He can read (in English and Spanish), his writing is improving, he likes math and is even remembering some of the names of kids in his class. Last year he knew 2 this year we are over 5.  He basically has the same kids in his class as last year plus 2 new kids.  When I go to a parent teacher conference and hear how he is doing or see test scores part of me wishes he was a better student and excelling like his big brother but most of me is just so proud he is doing well in a dual language program that I really don't care about him being a little behind in reading or the fact that he can't sit still.  Don't get me wrong, we make sure he gets extra help and we work with the teacher if they need us to help them figure out ways to deal with behavior stuff in class, but I am so thrilled with the progress he is making I don't lose sleep over the rest of it. 


We went to the Museum of Science and Industry this winter.  Our family, my in-laws and 2 of my nieces two days before Christmas.  It was busy!  J finally learned my phone number a couple weeks before we went so I didn't have to worry as much about him getting lost.  I didn't want him to, but if he did I was confident he knew my name and phone number and that is huge!  I also only brought the single stroller and figured if J needed it D could be carried or walk for awhile.  Sometimes with big crowds and an over stimulating environment J retreats to the stroller to hide.  We were at the museum from 10am-4pm and not once did J hide in the stroller.  It is little success like this that make me happy!


On the flip side when we have friends over to play J still plays mostly by himself, but near the rest of the kids.  He is in his own world and he seems happy there.  Sometimes D joins him and they both seem happy with that.  He still obsesses over things and it seems to rotate more frequently than it used to and we are all used to it now.  There are still easy things that he struggles with at home and I think it affects me more than him, because it requires more work and effort on my part to help him.  J's behavior and reaction to new situations is generally good these days, but just when I think he won't go along with something or not like it he surprises me.  I love the little knucklehead and as Brad points out Joel will always be my baby even if he isn't the youngest.