Being okay with being happy....

This little boy seems to get it, why is it so hard for me? That smile...that face...this little boy. He is the reason for so much in my life...the source of a ton of sleepless nights, worrying myself sick and a lot of unresolved guilt. But he is my light...my purpose...my joy. This little boy has taught me so much...I think he has taught a lot of people a lot. For one, don't underestimate him...

So...this has been a week we have waited for... Zachary has been in school nine weeks. Last week we had his parent teacher conference and got great reports. While we were thrilled, not surprised. He is a smart boy, loves school and is doing great academically. At the first school ARD (IEP in normal states - individualized education plan for kids with special needs), we agreed to have him completely re-evaluated and to meet again in 8 weeks with results...then create an ARD around that. We have also taken him to BAMC (major military medical center) for the same tests to be run. We had an idea of some things, but really a lot was a shock...

They did a lot of the same tests as CA. He was given the ADOS to test for Autism. Zach didn't qualify here. His language skills are too good and his social. While he has deficits in social, he has the desire to be social. He was tested for Aspergers....he was scored as highly probable, but not conclusive and will be retested in 2-3 years. We are on the fence with this one. He has a lot of the criteria for this one....very smart, great memory, interested in single subjects and topics...ones that are "abnormal" for a child his age (maps, GPS, weather). This is referred to as restrictive behaviors and interests. His social skills again trip us up...he is lacking in this area, but he has a desire. So that leaves us with the glorious label of PDD- NOS again...basically he has some but not all of the characteristics of Autism or Aspergers. The big change is according to the school and the battery of tests they did on him, he no longer qualifies at the school as a child with Autism. PDD is a diagnosis that will stand and does put him on the spectrum, but basically they are saying it isn't impacting his ability to go to school and perform at this time. HOLY CRAP! We didn't see that coming.

He will still be getting speech two days a week to work on issues in his speech that are still behind or not well developed...also to work specifically on social skill building. He is still tagged as in special Ed as a child with PDD. But, he will receive no special accommodations. He is functioning in a regular kindergarten class with 19 kids and doing well....no, I can't lie, he is doing great!

So why am I not happy? Because for two years I was living with a lot of fear, guilt and worry. Living under the cloud of Autism and what that meant for him and really for us. The hours and miles of driving for therapy and school. The therapy in home. The schedules, charts, transition work. I could go on. I didn't see the light, I just kept going because I knew I had to do what I could to help him. To me there was no choice. He is my baby and I love him...that is what you do when you love someone, you go to the end of the earth for them. In that, I never really saw that he was going to be able to do this. I just couldn't see past so much.

At age 3 when he was diagnosed it was a lot all at once. A sweet, loving, beautiful little boy was told he had a problem we couldn't fix. We had little to no services where we lived and I had no idea where to start. I had a newborn and a husband gone a lot. I wasn't in a place of seeing rainbows...Zach was primarily echolalic...he repeated what you said to him back to you or repeated phrases he heard somewhere else. He walked the perimeter of the yard and park looking out of the corner of his eye. He could watch water all day. He had tantrums and outbursts if we went a different way to the park or if we went to the commissary and he thought we were going to the BX. He never played at playgroups and it became too painful to go.

His test results in CA weren't good. His IQ was 71, borderline Mentally Retarded (below 70). It wasn't a pretty picture.

I knew we had a lot of work to do and so we did. He was potty trained on Columbus weekend. He started a private preschool in Palmdale in the 2 room as a 3 and moved up after the above mentioned...he started speech therapy at the public school and then entered their special ed speech program...then one on one speech with Miss Gerry. He went to summer school. I tried things like gymnastics...We finally got him ABA therapy at the end of our time there. We worked a lot in the house on things. I struggled with play groups and things with friends because I didn't have a ton of friends and I never felt like anyone was willing. But regardless, we did what we could. And we had great people that helped us on this journey...

When we moved here this summer I thought things were going to be awful with school, but he has adjusted so well. One meltdown in 9 weeks that the teacher said was bad...otherwise he hasn't cried or flipped out at school. He has been able to do the work without modifications. Eats in the lunchroom and even goes through the lunch line. That is huge considering he is the pickiest eater. He handled the fire drill with no issue...goes to the specials and never complains that one day is computer and the next it is PE. All things have been positive...

We did hear over and over that he is distractable...wiggles, fidgets, impulsive. They can't diagnose ADD at school because it is a medical condition, but they said they think he has it according to the tests they did and we also had BAMC do it...we will seek medication if he does to help him keep that distraction in check.

The big part of the testing was academic...they did a complete IQ....He beat his CA score by 41 points. I won't go into the details on here of the breakdown...off the charts in some areas. Especially reading at 133! They then did a comprehensive reading test on him because he scored so high...he is five and the test is designed for 6-18 year olds...again above average. When they compiled his tests he was equivalent to a 7-8 year old in most areas except spoken language (his pragmatics and syntax are not the best).

In other words this little boy is very bright. All that know him, already knew that, but none knew how much. Kinder doesn't have gifted classes, but he will be tested in the spring and all signs say placed in gifted in 1st. I think that will be a huge help too.

So...

Why not happy? I think I am in shock. I am so used to hearing the bad...the concerns...the issues we have to work on. I have never had a group of people tell me he is doing so well we can't qualify him for things. What? Really? I am waiting for the other shoe to drop. I am trying to be happy at his success and knowing all the work we have done, he has done, therapists and teachers has paid off. He has learned how to control some of his problems and we have helped teach him ways to cope. He is learning the correct ways to interact and that it is fun. He has matured. He has flourished in areas that have given him confidence and independence. He is now getting occupational and speech therapy 2 days a week here privately, in soccer and swimming...so many things to see and do here and keep him active. NO, he isn't cured. He still has a diagnosis and is on the spectrum. He might also now have ADD. But he is able to function with it!

I am so thankful tonight for now knowing that he has come so far...seeing it in black and white. I watch him every day and I am amazed at this child. I couldn't have asked for a more incredible person to have as a child. He is remarkable. I am so lucky. And I wouldn't change him even if I could. I hope I can take a step back and just enjoy him more now...not stop working, but now I can know that the work is paying off and we see the light.

That little boy with the big smile knows that there is a lot to be happy about and to everyone that has helped get us here....THANK YOU.