Where do we go from here?

There we were in December of 2005. We were finally taking possession of our new house, had a four month old baby and a new diagnosis. What is this thing called Autism anyways? We had to do all of our own research to see what this autism thing was, find a place that provided early intervention at the worst time of year when every agency was full and move to a new house with two small children. Great!

Our options were limited which was good and bad. It limited our options and so we only had three agencies to research. We signed on with one and finally started daily in home therapy three months later. What an invasion into your personal space and your time and very isolating when I already felt very alone. But we had to do everything possible for our little Zach.

The first agency was definitely not meant to be. They did the same puzzle over and over and over again with Zach and I just felt that Zach was bored and too smart for that. The speech pathologist was not very welcoming for a parent to take part in the sessions and I wanted to be involved. I wanted to know what they were doing so we could follow through with this early intervention. They started using PECs which is using pictures instead of words so that Zach could communicate some of his wishes and wants to us. I figured that Zach was at an earlier age than they were used to and somewhat at a loss with what to do with him.

So if something doesn't feel right...look for something better. We were already intending on switching to another agency in the fall for preschool. With further investigation this other agency Zach was signed up for was only going to give one hour of speech a month for a severe language delay. That just wasn't enough. Zach needed more. So we started investigating more agencies and found one that discouraged us from starting Zach in preschool so young. Zach was only two turning three at the time so there was no reason to start him that fall. But we switched  to this amazing agency that summer. My mother gut instinct was absolutely correct. The new agency knew exactly what to do and had monthly meetings with Zach's entire team including a parent so we would be fully on board with everything that they were working on with him. Fantastic! Loved them! Now this was early intervention.

Zach indeed was very smart. He certainly kept them on their toes to keep them constantly changing his program. He would struggle with certain things and then almost have a growth spurt and get something that they had been working on for months and months. They helped us get rid of his bottle, helped us toilet train him, worked on social interaction, helped us with difficult transitions like leaving the house and from one activity to another and too many more things to mention in this space. They loved Zach like we loved Zach. The occupational therapist helped work on dealing with different textures, getting him to eat a variety of foods, and even drink from a cup. The speech pathologist...I cannot say enough about her. She got our little Zach to go from one word to speaking short sentences and telling stories. But I cannot overlook the many many people that worked in our home that dealt with the temper tantrums and taught our little Zach how to speak. They did the implementation of the plan. The program coordinator oversaw all that was in Zach's program and kept it forever changing. Wow! Zach was a new person. He was a delightful person. We started Zach in a preschool with boys with autism and a regular preschool with an aide. Zach needed the interaction with the other kids and needed to be in a regular class so he would get a taste of the real world. He continued to excel and grow. He is a very hard worker. We cannot overlook all of the hard work it took to get him where he is today. 

You see your little person and how far they have come and how hard they have worked to be at the place that they are in today. And then you take them out into the real world and have them around other little people that are the same age. That is where you see the differences. You love your child none the less but you see how your child struggles socially and desperately just want to fit in. The other children and parents look at Zach differently. Zach looks "normal", he doesn't look any different but what is different about this child? Zach is so high functioning that it takes a trained person to recognize that Zach has autism and sometimes even the trained eye overlooks the diagnosis. 

The program funding transitioned us into kindergarten with an aide. Zach had a speech pathologist and some assistants working with him in the classroom and an occupational therapist for the fine motor difficulties. But of course the funding and in home therapy had to eventually come to an end. Grade one has been an eye opening experience. The severe speech delay is no longer severe but the challenges with speaking is spilled over into the classroom. The hand holding has been lost and now our little boy has been left on his own with a classroom of seven kids with special needs and one assistant and one teacher for seventeen kids. Again...where do we go from here? How much do we as parents need to be doing and how much responsibility should the school be taking on? How much is realistic for parents...one that works full time and one that has the responsibilities of running a household with three other children in it? But Zach continues to get older and his needs are ongoing. We cannot ever get this time back so we cannot just tell Zach to stay on a shelf until we have time to deal with his needs. Although autism effects 1 in 110 boys, we are isolated and not surrounded by other families dealing with their own children. We all have our separate plights to deal with and each case is individual. There are never two exactly alike. Help us! Help us to know what to do and what is best for Zach and our other children.