ONE YEAR LATER – REFLECTING ON AN AUTISM DIAGNOSIS

Noticing your child is developing differently can be one of the hardest things we face as parents. An official diagnosis can often lead to a period of mourning. It’s something that is difficult to understand unless you’ve been there. Even then, we all handle it in our own way.

The Center for Family Involvement is reaching out to parents to get their perspective, in hopes that by sharing our experiences, we can help someone new to this journey.

We begin with Annette Harper. She’s a mother of two and a fitness instructor. Her son was diagnosed with autism a year ago. We asked her to reflect on how things have changed since then. This is her perspective, in her own words:

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ON NOTICING DIFFERENCES

When he was 2 or 2 ½ year-old I noticed that his behavior was different from other children we were around.  My husband thought that he should be speaking more at that time.  When I took him for his 30 month check up, the pediatrician first mentioned that she saw signs of Autism.  She told me that he should be speaking more and his behavior wasn’t “typical.”

ON THE AUTISM DIAGNOSIS

I had so many emotions going on. I was scared, confused, and relieved.  I was scared because I had no idea where to go next and also not knowing how it would affect him growing up.  I was confused because I didn’t know how to help him, but knew that we were going to find out.  That is when the relief came in.  Since we had an official diagnosis, I knew that we would begin the steps to get him all the assistance he needed.

ON HANDLING IT AS A COUPLE

I was very emotional.  When the psychologist gave us the official diagnosis, I broke down into tears.  Although in our hearts, we knew it was Autism, until it was diagnosed it wasn’t reality.  The first week I tried to process it and there were tears.  By the second week, I got online and began researching all the options there were to help him.

My husband was very strong.  He felt relief just as I did and knew that we would get him all the help that he needed.

ON WHAT HAS CHANGED IN A YEAR

Oh my goodness, so much has changed.  There was a long time that I could not take him and my younger daughter out in public by myself.  His behavior was very unpredictable.  He’s a big kid and has always been in the 90th percentile and up for his height and weight.  I have had several occasions that perfect strangers had to help me get him into the car because I just couldn’t handle his strength myself when he would melt down.

Now, we are able to go just about anywhere.  He’s able to tell me when something is wrong and can remove himself from a situation if it’s uncomfortable for him.  He calls it “taking a break.”  We used to use a visual schedule with him and if we did something out of sequence, it would set him off.  We no longer have to use the visual schedule.  He is able to transition smoother than before.  Transitions were very hard for him to handle, but he is able to do them with ease most of the time now.

ON THERAPY

My son has come a long way since he started therapy.  We couldn’t get him to sit down to eat a meal hardly ever.  Although he still would rather standup, we can get him to sit down for longer periods of time to eat or do an activity.  He is playing with children his own age now.  Before, he would prefer the company of adults, younger children, or play by himself.  He wouldn’t even acknowledge when another child would introduce himself and ask him to play. He now fully engages in play and says his name.  It’s quite cute actually. He is able to articulate when something is bothering him. I think that this has come from therapy and getting older. Before I don’t think he had the words to fully communicate what was bothering him.  But now, for example, if something is too loud, instead of screaming he either covers his ears or he will tell us that it is too loud.

ON HEALTH INSURANCE

Unfortunately, insurance does not cover the ABA therapy that has been the biggest help for him.  It’s maddening that it’s not covered by insurance.  Thankfully, speech and OT are covered.

ON SCHOOL

We have had a great experience with the school team.  From the very beginning when our pediatrician recommended that we take him to the school system at 2 1/2 to have him tested to present day, we have no complaints.  They have been very thorough and have given us so many tools to help him at home.  We are very thankful to have had such great professionals help us so far.

ON AFFECTING RELATIONSHIPS

I don’t think that people fully understand Autism and how what seems like a simple task for a typical child, is not always for a child on the spectrum. We have had to back out of plans last minute many, many, many times and it has upset people. In the early days before his diagnosis and just after when he would have melt downs, we literally could not get him out of the house and into the car. It just wasn’t worth it to upset him in order not to upset a friend. I don’t think people understand how much Autism affects the whole family and how difficult it can be.  ‘ve learned to try and brush it off and keep in mind that he is my first priority and if someone gets upset because I have to cancel last minute, then I don’t need them in my life.

ON FAMILY

Autism has not impacted our relationships with family. Our family has been our biggest fans from the very beginning.  They are so supportive.

ON HERSELF

I try my very best to keep my patience, just like every other mother out there.  But, I have to do it even more with a child on the spectrum.  As a person and a friend, I think I’ve learned to be more flexible and just take things as they come.  I have come to realize that I can’t control everything and trying to is just exhausting.

ON HER SON

I’m so proud of my son. He’s come such a long way. He has taken every new therapy, therapist, activity in stride and with a smile on his face. Every new therapist we meet, he greets them with his big smile and a loving hug. With everything that he has gone through and will continue to go through, he remains our sweet, loving little boy and I couldn’t be prouder of him.

ON DIFFICULTIES

Understanding how to navigate around things that upset him and how to calm him down is probably the most difficult aspect. There were times when he would have such bad melt-downs, my husband would have to come home from work to help me calm him down. His fits could last 60 minutes or more. Thankfully, those have not happened in a very long time, but trying to learn what would help him calm down was difficult.

ON THE BEST THING

His therapists and teachers have been the best thing to happen to me. They have given us the tools and tricks to understand Autism. My husband and I did not know a lot about Autism before we were faced with it in our own family. We only knew what we saw on TV. The saying goes, “If you meet one person with Autism, you’ve met one person with Autism.”  No two people are alike that are on the spectrum and the therapists and teachers have educated us on how to navigate HIS Autism.

ADVICE FOR PARENTS NEW TO THIS JOURNEY

Breathe. It is very overwhelming and there is a lot of information out there. Take the time you need to process the diagnosis and then find out what therapies you can get to help your child. Take time for yourself and your spouse too. Our son is in therapy 5 days a week. I drive him to speech twice a week and he has private therapy at home 3 times a week. It’s all consuming. You need to take time for yourself to decompress and also spend time outside of the house with your spouse. It is very stressful, especially in the beginning. You may not have the same reaction or emotions as your spouse, but you need to keep the lines of communication open or it could really affect your relationship.

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