What a Difference a Year Can Make

As the month of May settles in, I am finding myself becoming a little emotional.  At this time last year, the A word was just creeping into our lives.  We were filling out paperwork galore, answering never-ending questions, attending evaluations and having our eyes opened to a new world.  A world that we had been living in for years without really knowing we were there.

In three short days, we will hit the one year mark of receiving B’s diagnosis.  That awful day in May when I got the call from the school psychologist.  She said the words to me that no parent ever imagines they will hear, “your child is on the autism spectrum.” I froze in my desk chair, hot tears streaming down my face.

Autism? What did that mean for his education, his future, his life? What changes were we going to have to make for our family?  Is he ever going to make friends? Is this what  a broken heart feels like? Oh my gosh, my husband, how am I going to tell my husband? What will our friends think?  Will our family support us? Does insurance cover treatment? How am I ever going to put one foot in front of the other and continue moving?

The questions were whirling through my head.  I wrote down some dates of when we would need to meet next, but I was no longer listening to the voice on the other side of the phone.  My world had just been rocked.  Thinking back to that day last May, I would have never imagined we would be where we are now.

In the past our family has received the following diagnosis:

B: Asperger syndrome, Sensory Processing Disorder, near-sighted vision accompanied by tracking issues;

A: Multi-System Developmental Disorder, Sensory Processing Disorder, Sleep Myoclonus;

Me: Depression, Anxiety.

We have gained the following services:

B: Early Intervention preschool services through the School District, Day Treatment services through a local autism program, Medic-Aid through the State, a community based grant through the State.

A: In-home early intervention services through the School District, pubic health nurse services through the County, Day Treatment services through a local autism program, Medic-Aid through the State, a different community based grant program through the County.

Me: A wonderful counselor that talks to me twice, monthly.

It has been a long year full of countless changes.  It has been difficult and taxing and emotional, but I wouldn’t change a bit of it.  Why? Because we have also experienced some huge, amazing, wonderful changes as well.

Last year during our spring preschool conference, B was having a very difficult time.  Academically, he was able to keep up and was even complaining of it not being hard enough, but he still needed a lot of support.  He was having difficulty with his peers, he was having a hard time sitting with the group, he became unruly during gym time and overall was requiring a lot more one-on-one assistance than the other children in his classroom.

This years spring conference was like night and day.  During the school year, through trial and error, we have found a combination of supports that have ensured that almost every day at preschool is a great day! B is now playing with friends during free play time, is able to stay with the group during large and small group activities, is no longer over-stimulated by the gym and is able to be a lot more independent in the classroom.

We are also experiencing some amazing changes in our home.  Again, through trial and error, we have found things that work to help B be more independent in his activities of daily living, he is sleeping better and is just all around better adjusted.  He is a healthy, happy five year old boy with a few extra supports.  That is all.

A has also made some amazing changes.  Through the help of his EI team, he has weaned from daytime nursing, is putting together multiple words in sentences, is moving away from always talking in scripts and is also just so much more well adjusted than six months ago.

Life threw us a curve ball a year ago.  We could have watched that ball go by, but we chose to swing for the fences and baby, it was the best decision we ever made.  My boys are growing and changing every single day for the better.  I can only hope that the next year will be half as amazing.

Our family was forever changed that day last May, but my heart is healing and my feet are moving, one step at a time.

It is Official

B officially has Asperger syndrome.  We had his medical diagnosis last week.  I think it was the first time I left an appointment like this feeling hopeful for the future and really wanting to continue moving forward.

The organization that we chose to work with for his diagnosis is really outstanding.  They are a not for profit, local organization that is a leader in autism and other special needs services in our state.  Every time I have visited their facilities and met with their staff I have felt a sense of comfort and understanding.  Last week was no exception.

Our appointment began at 9:00 a.m.  In typical fashion, we were running behind, but we made it.  I was worried that B would have a difficult time attending to the tasks they had for him, but the psychologist said he did wonderful.

My husband (E), B and I were at the clinic for three and a half hours during which time one child psychologist interview E and I and one took B into another room where she evaluated him and performed IQ testing with him.

Not surprisingly, B scored quite high on the IQ testing.  However, his social and emotional abilities are scoring far below his age.  None of this was really new news to us, but it was just presented in a way that was so hopeful.

The psychologists laid before us, quite a few recommendations and explained to us how each of those will benefit him now and how it will help to shape him in the future.  It felt really good to think about the future in such a positive light, instead of thinking about all of the deficits right now.

One of the options they suggested was a day treatment program that is run at their facility.  B would attend the program two days per week, for three hours per day.  The program is designed that B would be in a classroom with peers that have similar needs and abilities.  Each room has 4-6 children and 4 teachers, so B would get a lot more individualized help than he is getting in his normal preschool setting.

In addition, B would have a development plan written specifically for him, similar to an IEP, that would spell out the goals they want him to meet and what they would do to meet them.  The program uses mulit-perspective approaches to intervention, so each child gets what works best for them.

The core of treatment done during this time would really focus on giving him skills in the areas of his social and emotional development.  Currently, his school readiness does this as well, but not at the level that is appropriate for him.  While he is making some progress, it is not enough to bring him closer to his peers. They are building their skills as well, and moving even further away from him in this aspect.

The program would also work pretty diligently to find strategies, that work in the classroom, to help B with his sensory needs.  As it stands, most of his day is spent just keeping him regulated and he is really missing a lot of the school day due to his high level of needs for his sensory system.

With kindergarten starting in 10 short months, we feel like this is going to be an amazing opportunity for B.  He is still at a stage where he really loves going to school and seeks out learning every where he goes.  He also does not realize, fully, that he is so different from his classmates.

We are hoping that with this day treatment program, along with his current schooling and some other private therapy options that we are pursuing, that B will be able to function next year in the classroom and put all those brains he has to work.  He is a smart little cookie and we don’t want him to lose that because his sensory system and social and emotional skills hold him back.

Hope.  Today, I have it.

First day of Preschool

B had his first day of preschool today.  We got great reports all around!

He got to ride the bus for the first time to school today.  We are very lucky that he is provided free busing by the school district, since he is on an IEP.  He is the last pickup before going to school and today, the bus was about 20 minutes late.  He started getting nervous and I pulled out all my best stuff to avoid a meltdown.

We had success; the bus pulled up to our house and B jumped on like he had done it a million times before! He hopped up into his seat,  let the helper buckle him in and waved goodbye with a big smile on his face.

I got a call on my cell phone a little over an hour into his class time from his room and my heart dropped.  But alas, the SPED teacher (Mrs. A) was just calling to ask a simple question.  She said B was having a great first day and that I should be very proud of him.  ❤

To keep up communication, we have a notebook in B’s back pack that will go back and forth every day to do simple, quick communication, since Mrs. A is not able to check email frequently throughout the day, this works best.  Today she wrote:

B followed the class routine and transitioned just great! He played near a friend with the magnet blocks for a long time during choice time. It was a good first day!

B reported:

It was awesome! The bus was so cool.  It even had seat belts, which is much better than the city bus because seat belts would be much safer in an accident.  I even met a friend today and her name is Isabelle,  like the other Isabelle I know.  I think I like four year old school.

I am proud of my boy!