Diagnosis Etiquette

I'm the mom of 3 gorgeous boys. They are ages 9, 7, and 2. When my middle son was around 18 months we noticed certain behaviors that caused concern. With the help of Early Intervention Services, he made some great strides and didn't even qualify for therapy by the time he was 3. However, some of those same behaviors (and even some new ones!) stuck around and began to interfere with his daily life. In December 2008he received an Asperger's diagnosis and thus begin our journey into autism. Fast forward and we have Aden, our 2 year old. I've posted blogs about him before. :) He still doesn't talk, has several developmental delays, and is now in Early Intervention Services through our state. It won't surprise me at all if he eventually receives an autism spectrum diagnosis at some point. In the meantime, we were able to use the same therapy providers that saw Ethan and we love them just as much.

Despite the blessings that we've had through this journey which include loving our children exactly the way God gave them to us, we've also experienced some serious heartbreak. The very first time your motherly instinct tells you something isn't quite right is enough to make anyone just want to crawl in a corner and drool on yourself. Then when you receive evaluation after evaluation that specifically state how delayed your child is and what all of the issues are, you find yourself in that place again. The cool thing about that motherly instinct is the survival part of it. You mourn that diagnosis and evaluations for a day or 10, have your pity party, then attack it head on like a woman on a mission. We are on a mission. We are on a mission to make the situation as well as you possibly can and do whatever is possible to help your child survive in this 'normal' world.

The hard part is also dealing with the mixed blessings of well-meaning friends, family, co-workers, etc. Despite everything in my being telling me something was wrong, I can't count the number of times I was told there was nothing wrong with him and he would grow out of it. Or better yet, being told how many people they knew that were just like that without having autism. In other words, I was being over dramatic (or at least that's how I felt). The other part of the healing process is when you are in attack mode, the pity party is several days behind you, and you realize that people are just trying to make you feel better. In these situations, no one really knows what to do for you and you aren't even sure what you need either.

I'm from the South and whenever there is a major life event, there is food involved. LOL When there is a death in the family or in a friend's family, you take food for after the funeral, when a baby is born you take meals so the new mom doesn't have to cook, when someone has a cold or the flu you take homemade soup. None of those do anything to help you deal with a diagnosis of autism or any other neurological disorder. Looking back, I think the people around us feel helpless and without words. Our loved ones know this will be along process. So although I don't have any advice, the last thing we need to hear is that our children are fine.

I also realize that there are a ton of worse things that could happen besides an autism or Asperger's diagnosis. Right now, my children are healthy and there is nothing terminal that is going to take them away from me. That alone makes you feel like you're whining over nothing. It still temporarily rocks your world. But in the end, my friends and family did offered very useful things for me. They never faltered when I cried, they offered to keep the older boys whenever needed so I could take Aden to therapy and give him my undivided attention, and most important of all, they don't love my children any differently than they did before. They accept them just they way they are.

So, I would love to compile a list of things that would have helped you. I know a lot of times we don't thing of those things until we're looking back in hindsight. I'm on several email groups for homeschooling and even one specifically for homeschool Asperger's kids. Every time a new member pops up, I'd love to be able to pass on some words of wisdom. Give them some things they won't be afraid to ask for from their family and friends. I know they will appreciate it. :)