Tuesday, August 23rd is a date that our family has been waiting for. Back in October, we finally convinced our son’s doctor to contact the OU Child Study Center and refer us to them for an autism evaluation. The OU Child Study Center offers a team approach to evaluating and assessing autism-spectrum disorders (ASD). There is nothing like that in our area. Our doctor was not enthusiastic because of the long wait–we received an appointment after a lot of paperwork for ten months after our initial contact. However, we did not have many alternatives. Our other options were to see a local neurologist (which we had not heard great things about) or going through a doctor in the Dallas area that was not on our insurance. Fortunately, we found the OU Child Study Center was covered by our insurance and they provide a team approach to assessment and evaluation. We are hopeful that we will have a direction of moving forward tomorrow for AJ.

Most people think AJ is completely normal and we often get the “everything will turn out ok” message from folks. It most likely will. But it doesn’t mean that there aren’t areas where AJ could get more help. Overall, AJ is a pretty typical kid. He loves watching cartoons (Wow! Wow! Wubbzy! is a current favorite), jumping and running, laughing uncontrollably, and cookies. He struggles with playing with other children, responding to his name when it is called, using words for communication and looking people in the eye. However, he can spell short words, read short words, and count to fifteen. He’s known his alphabet since before he was two. He’s very bright and loves to learn.

So here are my top ten things I’ve learned as a parent along this journey:

1. You have to let go, and even grieve, the idea of the child you had. Certain things will never come easy to AJ. We will most likely be the parents who have to have several meetings with teachers and staff at schools. However, I think this is something all parents go through–at some point, we have to let go of our parental ego and let our child be whoever they are going to be. Our dreams don’t cut it at some point, and their dreams and abilities and gifts have to be allowed to flourish, for them to be who they were created to be.

2. Do your own research. Everyone will venture an opinion and not everyone is right, including doctors. They see your child for a half hour once in a very long while–you are with your child every day. If you suspect something is off or different, do your research. Call and ask questions. Early Intervention is a federal program and is free–so are their evaluations. It never hurts to seek more guidance/assessment early on if you suspect something is different. There are many good doctors who can miss some of the early signs because they don’t always ask the right questions.

3. Don’t google every little thing. This is the counter to #2. You will come up with all kinds of crap on the internet telling you one thing or another about autism or learning delays. Check out Autism Speaks and the resources offered and start from there. Check out statewide autism networks as well (the Oklahoma Autism Network website is how I first learned of the OU Child Study Center).

4. Talk with other parents. Other parents are probably the best source of knowledge, as well as just an ear to listen. I have learned the most from talking to parents of children with autism-spectrum disorders and received the most support from them.

5. Whenever possible, go with your spouse/child’s other parent to doctor’s appointments. It is good to have two sets of ears listening as sometimes miscommunications/misunderstandings can occur, and it’s good to be on the same page when decisions for therapy or referrals are made.

6. Don’t worry too much. It’s hard not to worry, but worrying doesn’t help anything. If you have concerns, do follow up with a doctor or specialist, but try not to worry about the “what-if’s.” I know at times I have worried about whether or not I will have a child living with me for the rest of our lives, or whether he will be able to hold a job or go to college or even make it through public school. Take it one step, one day at a time. It doesn’t help to worry.

7. Socialize! It was important to us that AJ start socializing more when we first started suspecting he had some delays in communication. We set up play dates and we enrolled him in our church’s school two days a week. Since he was 18 months old, AJ has learned that school has routines, that he needs to share space with others (though sharing toys is a challenge, but he is a typical child that way), that he needs to eat and nap and be with other people.

8. Don’t be afraid to talk about it. Sharing about AJ’s journey with other parents has helped them understand AJ but also has helped other children get to know AJ. Sharing that AJ doesn’t communicate with words well but that he likes being around other kids helps both parents and children play with AJ. The kids in his classes have always liked him, and they know how to play with him. One boy in his class last year used to find all the alphabet shapes from the Play-Dough toys and hand them to AJ, and AJ would take them one at a time from his hand. They know that AJ likes to line up blocks rather than stack them, but sometimes they will show him how to stack and he will stack them next to theirs. Sharing about AJ’s journey has helped both kids and parents understand him and in fact helped him be more “normal.”

9. Pray. Pray. Pray. Pray for your child, pray for yourself, pray for the doctors and specialists helping your child, pray for their friends and family–but probably most of all pray for yourself. Your child will always be your child and they will be the person they were created to be. It is us that often need to change–change our perceptions and expectations. Pray for strength and courage to handle the journey, but also to recognize that this is just another part of life.

10. Have fun! We have found that the things AJ enjoys are really enjoyable! He loves to swim, to jump on bounce houses, to swing, to run, to read–the list goes on and on! What AJ enjoys, he really enjoys, and his belly-laughs are to-die-for.

It’s a journey for both parent and child, a learning process. I know now that AJ would not be who he is without his quirks, without going through this. He is not a mini-me, he is his own person, and I know that more than ever through this journey.

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2 Responses to Top Ten things I have learned along the autism-spectrum journey

  1. Jenee Woodard says:

    Our 19 year old son is severely autistic. I appreciate your reminders about keeping sane and keeping my sense of humor. Living with an autist has taught me many things and I see the world differently because of my son. I’ll be thinking of you and AJ.

  2. […] Rev-o-lution.  At the time, in 2011, my family lived in Oklahoma. This first blog entry, “Top Ten things I have learned along the autism spectrum journey” sums up a little of what I had experienced prior to AJ’s diagnosis, as it was written […]

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