Our Autism Journey, just the beginning..

These posts are taken from my family blog from 2008. It describes our journey with our son Zack. 

I just thought his constant lining things up was unique. I didn’t think anything more of it. 

Zack was staring off so I told him to look at the cookies. Ha Ha, he sure did.

Zack Lined up all of his letters.

“There are some months when we are just constantly going to the Doctors. Today we went to see a Neurologist for Zack. I will post a video below of Zack “Bumbling”. It is such a weird thing. I have never seen any other kids do it. I always wondered if he was just being weird or if I should be concerned, so I mentioned it to my old Pediatrician. Now that our insurance has changed we started a new Pediatrician for shots, so I mentioned his Bumbling to them also. She sent a referral over to the Neurologist to see if he has a Tic and that is why he is doing these weird movements. The Specialist asked tons of questions and had him do several physical things. When he was done with his evaluation he said that he does think he has a Moderate Tick as well as very mild symptoms of autism. I had been wondering about Autism (very mild Autism) because he has some symptoms of that. We now take him to have Genetics testing done where they pair up the Chromosomes and see if anything is going on there, and we also are going to see if he can be put in the Early Childhood Programs through the School District. They would cover the Speech Therapy as well, so that is nice.”

“Today was Zack’s speech assessment for Child Find. The guy took Zack back for about 45 minutes. When he came back to ask me some questions, he said “Zack has me in a quandary.” He explained that he has been doing this for 14 years now. If a child is Autistic it shouts to him and is a lot easier to pick out. He explained that Zack would kind of “blip” oh there is Autism, then it would go away, “blip” there it is again, oh it is gone, “blip” it’s back. He said that Autism is a heavy label so he wants to have someone come to the house and observe him more before they “label” him as autistic (Which they have to do to get services for the Autism). I told him that the Neurologist specified as well, “Zack has signs of mild Autism and a moderate tic”. He also agreed that Zack had some interesting Tics he has never seen before. Zack is unique, what can I say? He said he will definitely be getting speech services. He might have Developmental Delay or Autism or both, and might just get the whole shabang with their services. Either way, I think we can expect him to start school very soon. They will have a final meeting after the home visit, so I will let you know how it goes.”

“Today was Zack’s in home assessment as well as his Neurology appointment. We had 3 ladies come out today. One was doing the interaction and the other two were taking notes. It was so obvious what he could do and what he couldn’t do. Sometimes they would smile and look at each other, and other times they would scribble in their notebooks when he was having a difficulty with things. We have the final meeting on the 27th where they go over everything and we come up with a plan for him.

The blood work we did earlier showed that Zack doesn’t have a genetic form of Tourettes, so that is good. He can have Tics but Tourettes is more severe. I told him about Kevin and he said he definitely has a Tic as well. Who would have thought. 

You know the most frustrating thing with this whole experience (so far, because we are just beginning) is not the obvious, but the amazing resistance in the family at the idea of something being “wrong” with one of the kids. Sometimes I feel completely alone in dealing with this. I have seen red flags and done a lot of research. I have worked with hundreds of kids and even worked in special education rooms. I have taken classes for Early Childhood and Special Education and I know the importance of getting them into the programs early. I just never expected to be the only one(except Kali) in my family, with extended family included, that thinks there is something off, or wants to acknowledge it. For some reason, I thought we would all be on the same page but I have spent hours defending my instincts and research. I get lectured on “he is just a boy” “he will grow out of it” “I was like that as a kid” “everyone is so quick to slap a label these days” “I have seen one autistic kids and Zack is fine”. Since I started the process of getting him help, I deal with it alone. When I am with the professionals I finally get some companionship in my quest to help Zack. It has been nice (like today) to have everyone working with him seeing the same red flags as I am, and acknowledging them. Today I don’t feel alone because I had 4 people(3 from the school district and the Neurologist) that are ready to give Zack the help he needs.

Since I have explained my situation to family about them being nervous that Zack is going to get a “label” and think that everyone is hasty to give them out. I might as well as explain my experience here as well. Zack has been observed for over 5 hours by 7 different people. They drove out to our house(which is not something they do often) and observed him in his natural environment. I have been questioned about everything for over 3 hours in addition to his observation. I have had a verygood experience working with the School District so far. They are very thurough. But the most important thing, most people forget, I am with him almost 24 hours a day, 7 days a week, and I have been with him for 4 years now. I know my son.”

This is how Zack likes to look at things.
He puts his hands in a Triangle and then crashes into Abby’s head.
“Yesterday was Zack’s final meeting with Child Find. I have this huge packet of his Evaluation and his goals for the year. They don’t diagnose medically but see if they meet the Educational Requirements. Because they don’t diagnose, they say he is very likely of being Autistic. They want him to start next week in an all day program. Before going in Kevin and I were against the full day program. He has never been away from me and still takes naps. I feel comfortable with it now. We all want Zack in a normal Kindergarten so we are going to get him a lot of services this year. Hopefully next year we can work down to the part time program and the following year he will be ready for Kindergarten.
Kevin and I are nervous of him adjusting. Zack had a play date last week for 2 hours and a Halloween Party for 2 hours and he did pretty good at them. Emma was also with him though. When we were in St. George he had a hard time going to a new Sunbeam’s class. He let me leave the last 5 minutes. Zack takes a while to adjust to new things. We only have one car, which is the real problem. They do offer a bus to come and pick him up from the house but I don’t think Zack is going to do well with that at first.
He starts next Wednesday and I am very anxious. I don’t leave my children with people I don’t know and now I am going to have to. I called his Teacher today so I can meet with him before he starts. He hasn’t called me back yet. I am going to talk to him about a transition period so we can start taking him for a few hours until he is used to it. We’ll see how it goes.”

“Last Saturday we went and picked out our Christmas Tree. We had a good time until Zack started freaking out about a coat. It has been a while since we have had a scene in public. Zack has regressed or something since he started school. I have a few theories but his tantrums are bad. Sometimes when he goes on his rampages it is like the equivalent of the other 3 children combined. He takes so much energy out of you.”

Zachary is now 10 years old and in my opinion, no longer Autistic. Oh the journey we have come!

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