When The Tent Falls – After Diagnosis What Do You Do?
The day we found out, after diagnosis, was kind of surreal. I was about 4 weeks away from delivering my fourth child. She was 2 years old and still refused to walk. Even if she did walk, I probably wouldn’t have let her since she tended to bolt into traffic. I was too huge and too pregnant to run after her.
Without going into the entire story, as I think I have posted about the details in another blog, it was a 90 minutes appointment that ended with the woman saying, “Your daughter is at least mildly autistic.” It was like the tent fell. The entire big top fell to the ground and I still have to figure out how to get the two of us out of the tent with my giant belly in the way.
We watch a lot of cartoon movies. In Toy Story there is a cute little song that says, “You Have a Friend in Me.” It was the first thing I thought to tell you all when I started to write this blog post. Why? Because I was so stressed out when we found out. I was trying so hard to be strong and pretend that this big giant huge news didn’t bother me or scare me at all.
But, it did. It scared the ? poop emoji out of me! I went to my office, after dropping her off with the sitter, and cried my head off. Who could I talk too about this? I didn’t want to tell my husband by a text message, so I sat, and I cried … alone.
I was wrong; I was not alone. My family and friends and my other children were there for me. There were a lot of resources, I just didn’t know about it yet. There were Moms and Bloggers like me! So, if you find out or know someone else that has just found out, please show them some love.
We also joined a support group with A.S.S.E.W. They had a group of Mom’s that had already been through a bunch of the same things we were about to go through. I found having parent contacts was much more helpful for me than just health provider contacts. The health providers always seemed to be positioning to get us to use their services or help us – but in a way that benefited them the most – not our daughter.
“If you don’t know where you‘re going, you‘ll end up someplace else” – Yogi Berra
A parent group can be a good idea. Not only can it help you cope, you can find some of the best doctors in your local area, you can find the best intervention programs and workshops for you, your child, and your family. If your other kiddos need support, you can often find referrals here too.
Having an autistic child can be hard on the family. It can also be hard on your marriage. The divorce rate is higher with parents of special needs children. While we don’t want to admit it, an autistic child can put a serious strain on our marriages. Some of our friends have found getting marriage counseling to help cope during their journey to be helpful. Full disclosure, my husband and I have not gone that route. We have been married since 2000 – and we hope to continue, Till Death Do Us Part.
You Are the Expert
One more after diagnosis tip, that super sucks! You are going to have to become the expert. While our pediatrician is amazing, and rates #1 in the state, he didn’t refer us to someone to consider an autism diagnosis. We were referred for an evaluation by our pediatricians backup. Pediatricians can only refer. At least in our state that is the case.
Try not to go crazy gang busters and read everything and give yourself a heart attack. However, when something new comes up – you might want to research it so you have some idea of what to ask for and what to look for. Other parents are also great resources, again why a support group is a fantastic idea in my opinion.
Last, but not least. After diagnosis, educate yourself and those around you to help you provide the most beneficial resources for your family. And don’t worry – you’ll be okay!