Family can be supportive in the best circumstances, but in the worst, can be standoffish and even cruel. When your child receives a special needs diagnosis, it’s hard on everyone. It’s life changing and you will need plenty of support.
Many people, myself included, turn to their family for this support. Some get extremely lucky and their families do everything they can to help out, but some families aren’t as lucky for a few different reasons- distance, lack of family closeness, or just not wanting to get involved because they don’t understand the diagnosis. This can be deliberate.
Julian was diagnosed at five years old and most of Matthew’s family, including his mother, would not listen to anything either of us had to say about ADHD or autism. They thought he was just “hyper” or we just needed to discipline him more.
He’s been on medication since shortly after his diagnosis, and on sleepovers, my mother in law wouldn’t take those meds with her, even though we explained how to give them. It’s not that hard. One morning, she complained for about the 900th time that Julian barely slept.
Really? I wonder why. He didn’t get his meds.
Matthew had run out of patience at this point, and he’s a very patient man. He looked his mother in the eye and told her that he did not want to hear another word about this if she wasn’t going to give him his meds. She was well aware of how to give him his meds, she just didn’t want to deal with it. She didn’t see the issue- remember, ADHD and autism aren’t a thing.
Julian has not left for a sleepover without his meds since.
The message behind this story? When you decide not to learn about a child’s medication because you don’t see the need for them, it will backfire. Just because you don’t think it’s real, doesn’t mean it isn’t. *gets off soapbox.. storytime over*
Educate, Educate and Educate Some More
This begins with you, the parent. As soon as your child has a diagnosis, it’s time to do a lot of reading. Depending on the diagnosis, there are books out there you can read, maybe even a podcast or two if you are a fan of those. Learn how to use equipment, read up on sensory bottles, whatever it takes. If you need to, ask for help from your child’s pediatrician, specialists, etc. They are there to be a resource for you.
The more you know, the more you can help your child. They can’t always speak up for themselves, especially around a family that doesn’t understand. Don’t be afraid to challenge these family members- I’m not and they know it. I’m not saying to be rude in this challenge, but definitely come prepared with answers and don’t let anyone walk all over you. Have someone with you as backup if you’re not big on confrontation.
Some people are simply afraid. If they don’t know how to care for a child that needs medical equipment, has a severe food allergy, or is non-verbal, they stay away. If they are interested, have them come to a medical or therapy appointment. This can help them adjust a bit easier to your child’s world and get some questions answered.
The hardest explanation, I believe, is when your child has an “invisible” diagnosis. Julian is one of these kids, and it can be somewhat draining to explain that just because you can’t “see” ADHD and autism, doesn’t mean he doesn’t have it. I don’t think they really want to see him in the middle of a meltdown, because they would have no idea on how to deal.
They do not see the years of therapy, meds, money spent on both, my tears, the fights I had with Matthew to even get him diagnosed, the time I have spent in IEP meetings (or time I spent getting him one) and the sheer energy I have put into making sure he is the adorably funny kid he is.
Create Some Space
Some parents just aren’t able to make things work with their families even after trying to educate, and this may be the result of or part of other issues. This isn’t great, but it happens. It may be time to take a step back from these family members until things improve. This may be painful but the best option for you and your child. It may be stressful for everyone involved to continue to try to make things work when it’s obvious it won’t.
Build Your Own Circle of Support
Luckily, my mom and sisters are a great support. My mom and Julian are very close. I’ve also been able to create a circle of friends who get what I deal with on a daily basis- their kids are also on the spectrum. I know I can text or call them and they’re available. That is a wonderful feeling. I know that even on a crappy day, I’m not alone and one of them is probably having a day like mine. In fact, one has two kids on the spectrum, so his house is never dull.
Outside of that group, I’ve also joined a few Facebook groups, and they have been a good source of support for questions about ADHD. I’ve also joined some subreddits on the same topics. Internet groups can be a wonderful source of support, especially if you are in a rural area. This can give you a sense of community even if you’re not near an urban area.
If you are in a larger city, I recommend checking out parent groups that center around your child’s diagnosis. I participate in a walk every year with a local autism organization and love it. This year, Julian joined me- I was surprised because he hates being awake before 9 AM on a Saturday, but I was happy to get in the solo time with him. You can find these groups by Googling your city + diagnosis + organization, or a similar search.
I do have friends that either don’t have kids or have kids that aren’t on the spectrum or don’t have ADHD. This is also good. It’s refreshing and they keep me laughing. They cheer us on and cheer me up on the bad days. Everyone should have this. I highly advise finding friends like these.
It’s Fine if Not Everyone Gets It
Your family is meant to be there for you no matter what, but sadly, this doesn’t always work out. Do what you can to educate and include, but don’t stress about the rest. You have much bigger things to worry about- taking care of yourself and your child. Your family will be the ones missing out if they don’t want to come along for the ride.
Recommended Reading: Adjusting to a New World