6 important things to remember when your child has been diagnosed with autism

1. Prepare for the advice: I know that this is more than a little ironic considering that I am putting this into a post with advice, but you have to know that not everything people say will apply to your child. Even in this post you will find behaviors that we may have from our little boy that you don't see with your child. After your child is diagnosed with autism, you will be bombarded with well-intentioned advice. Family and friends will have tales and stories of people that they know who have autism and sincerely will want to help you in your time of need. What these people may not understand is that no two autistic children are the same. The spectrum for autism is wide and is only getting wider. My child may be on one side of the spectrum while another child may be on the complete opposite side. Some of the advice may be related to cases more severe than your child while some will be more tame. Remember that all of these people want to help you and although their advice may not apply to your child it does not mean that you cannot learn from it. No matter the advice that they may give the real message is always clear: you and your child will be okay.
2. Get ready to ride the roller coaster: Every day is a different experience. There will be some amazing highs and some devastating lows and sometimes they will relate to the same thing. For example, my little boy would say "ready, set, go" (although it would sound more like "eh-y, deh, doh") for a while around 18 months old and then wouldn't say it at all for about 6 months. Only recently has he started up again but even so he is only saying the "go" part (which now has him actually pronouncing the full word correctly). Your child may love macaroni and cheese for months and then suddenly refuse to eat it. Then several months later they may eat it again only to start refusing it a couple of days later. It's an adventure every day and sometimes all that you can do is savor the highs and smile through the lows.

3. Reacting to reactions: Whether it be a teacher, a friend, a family member or your child's peers, there will come times when people may not know how to react to your child. They may think that your child is being unusually picky or ornery. They may even judge you as a bad parent who cannot control your child. They may overestimate or underestimate your child's abilities. These situations will be some of the hardest ones you will ever face. You will get angry, upset, confused, and irritated. The best thing that you can do is to offer to educate. Let them know about your child's autism. Let them know some behaviors that they may expect and why your child acts the way that they do. They may be reluctant to ask, but they will appreciate your effort to help them feel more comfortable.
4. Get help where you can: There are a lot of different programs out there designed to help children just like your wonderful child. There are many schools out there specifically designed for autistic children but there's no reason why you have to wait until they're kindergarten age to get them outside help. There are many early intervention programs out there that do wonderful things at the very outset. For example, we found a program for our two year old called DDI Vantage. I was a little weary at first to how effective the program would be, but we have noticed a significant improvement in our son. Over the last 4 months we have had one of their representatives come to our home twice a month to work with him. During that time Skyler has gone from being nervous at any events with extended family to cuddling up to his uncles and playing with his cousins. Some of these programs may seem pricy at first, but there are many programs out there to help with the cost.

5. The developmental conundrum: As your child grows you will undoubtedly see other children their age make developmental strides that they have not. Other kids may have a larger vocabulary and be more socially active than your child. Your child will not have the same reactions to parties and family gatherings as other children. This does not mean that your child is not as smart as the other children. A lot of the time with autism the progress that they make is much more subtle. You need to keep in mind that your child may have trouble communicating but they are developing just as quickly as other children. As an example, my two year old is not really talking yet. What he is doing is building towers, increasing his fine motor skills, and investigating and exploring at a level that is higher than a lot of other kids. Your child is intelligent, but it may be harder for them to express that intelligence than it is for some other children.

6. Stay positive: One thing that is important to always do is to concentrate on the little things that your child does. When your child suddenly will sit or lie down in the bath after a year of only standing up during bath time, take pride in that fact. When your child comes up to you and gives you a kiss on the cheek embrace that moment. It's the moments like that which will keep you feeling sane. Things are not nearly as bad as they sometimes seem. Your child is smart, fun, loving and you are everything to them. Taking a positive attitude towards your child and their condition is the first step to being able to handle the emotions involved. It is very easy to feel overwhelmed and fear what the future holds for your child. Take a moment to take a deep breath. Think of all those positive little things and concentrate on them. Force a smile. Although the smile may not start out as genuine, somehow the smile will begin to take over your other emotions. You have been handed a very different parenting situation than some other parents, but you can handle it.

The hardships and joys of raising our wonderful little boy

This last year has been a definite emotional roller coaster for us. Shortly after our little Skyler turned one we began to notice that there was a delay in his speech and little quirks in his behavior. While we heard tales of other kids his age delivering graduate level dissertations we were lucky to get Skyler to play patty-cake. It was never that it seemed like he didn't understand things that we said to him, it was always more that he was just too dern stubborn to pay attention. He would spend most of his time walking on his tippy toes (giving his toned calves that would make professional kick boxers jealous) and bouncing up and down flapping his arms when he was happy. He was very stand-offish to most people other than us and wouldn't really give us much emotional involvement (we were lucky to get the occasional hug from our little boy). Skyler seemed to be a sympathetic crier who would be set off at the smallest sign of someone else being upset. Some of the things that he would do at one point he had stopped doing altogether (like saying "Ready, Set, Go!"). He had shown no real interest in things like birthdays, Christmas, or presents and would always play alongside, but not with, his cousins. In talking to other people and with my experience that I've had as an aide for a special ed kindergarten, we came to the realization that he might have a form of autism.

The realization that there might be something unusual about our little boy was a very hard thing to consider for us. We wanted to make sure that Skyler was well taken care of, but we didn't want to think that there was anything "wrong" with our little boy. The thought was too much to handle for us. We clinged on to the thought of it "just being a speech delay" as much as we could, hoping for the best for our little guy. In a check up with our pediatrician we voiced our concerns about Skyler's possible autism. The pediatrician ignored our question for about five minutes concentrating only on what he wanted to concentrate on. He then asked us two or three brief questions and replied with, "it's probably nothing". This is not the answer that we were looking for. Needless to say, we decided to change pediatricians and a couple of weeks later on the new pediatrician told us that there was a very strong likelihood that he had some form of autism.

That night is the hardest night that Amanda and I have ever had. We cried for hours just thinking about the possibilities of Skyler not having a "normal" life. We worried about how school would be for him, how he would deal with dating, if he'd be able to get married, if he'd be able to go to college, if he'd be able to hold down a steady job. We worried about how we as parents would be able to raise him and had doubts put into our minds in our own abilities and whether or not we could handle the future.

A few months later we were able to see a doctor up at the U who observed Skyler and ran some tests. The doctor gave him a general diagnosis of autism, but said that the intelligence is there to make it more likely Aspergers syndrome or PDD. With the doctor's diagnosis and most of the emotions behind us we were ready to do whatever we could to help our little boy. We set him up with appointments from "DDI Vantage" and put him on the waiting list for the Pingree School for Children with Autism. We have gotten together with some good friends who have a child with Aspergers and have been able to see how well he is doing. We have found so much support from friends and family to help us through the hard times.

We are now working hard to do everything that we can to help our little boy in his growth and development. We have been for several months working with the DDI Vantage program to set a course to help Skyler to grow and succeed and we have seen great changes in his behavior. He has completely opened up to others, getting up to sit on his uncle's laps and cuddle next to grandpa. The steps backward that he had taken with his speech are starting to turn themselves around slowly but surely. He has become more affectionate with us giving us kisses on the cheeks and wanting to cuddle for long periods of time. He has begun more and more to communicate with us and show us what he needs rather than whine with no indication of what was wrong.

All in all, over the past year we have realized that there is nothing "wrong" with our little boy. He has some difficulties ahead of him and we know that some other people will not know how to handle him. We know that others may develop more quickly in some ways around him. We realize that he may not have an 800-word vocabulary at the age of 2 while other kids may, but we are seeing more and more just how smart he is in so many other ways and we are confident that our wonderful child can and will lead a perfectly "normal" life.