I just want to preface this with that I have been in my fair share of mommy groups, and I know that not everyone gets support from family and friends. I firmly believe that it takes a village to raise a family, and I am grateful for the family and friends that surround us.
With that said, it certainly did not come easily to my husband and me to get the right support we need for our 5-year-old son with nonverbal autism.
Here are four tips that have helped our family and friends to support us and our son.
My son, Zachary, was two years old when he was officially diagnosed with autism. Prior to that I started to see red flags at nine months old, and started the process of early intervention at 17 months old. I felt “prepared” enough for the diagnosis, but I don’t think anyone ever is. I also wasn’t prepared to change my title to special needs mom, or the marathon that goes along with it.
I rarely ever talk about this part, unless I’m talking to another special needs mom. It’s hard for other people to understand this part. There is a grieving process that goes along with getting the diagnosis. I’m not grieving that our life isn’t “normal” anymore. No one’s is anyway. I’m grieving because I was given this diagnosis for my child, and it’s like Pandora’s box. I’m given lots of information, and it’s from lots of different people with very little direction. I felt lost, alone, and disconnected from everyone.
A week ago, I was worrying what kind of yogurt to feed my child, but now I’m worrying if he will ever make a friend, if he will ever graduate high school or hold a job.
Through all the emotions I went through and still go through, I needed patience from my family and friends. I wasn’t ready to openly talk about much at first, but I just needed my family and friends to sit beside me and wait.
I was still processing everything, educating myself, and finding out what works for our family. I couldn’t let anyone in at that time. My loved ones were patient and let us as a family become stronger.
2. Ask questions and educate yourself.
I love when people ask us questions. I think questions are great. It allows a door of open communication into our world. It also lets us know you care enough to ask as well.
I think back to before my son’s diagnosis of autism and how little I truly knew. What is stimming? What is ABA therapy? What is sensory overload? I didn’t know any of this.
If this was your child, you would be asking questions and doing the research. I think it’s so important for my friends and family to know a certain amount of things about autism, and what specifically effects Zachary. This is important because they are in direct care with him.
When we started home ABA therapy, they offered an educational course to the parents. I had also invited my sister-in-law, because she was our babysitter at the time, and I felt like it was really important for the three of us who spend the most time with Zachary to get all the information we could about this.
I also love questions about Zachary and not autism. What does Zachary like to do? What do you think he would like for his birthday? Do you think Zachary would enjoy doing this? We all have our quirks, and when you ask these questions, I know you have the best intentions and are being mindful of my son as a whole.
Please don’t be scared to ask questions and keep yourself informed. You will do a disservice to yourself and my child if you don’t.
3. Offer help.
I will be the first to admit I’m not good at asking for help, or even taking someone up on their help they are offering. However, like I said before, this is a marathon run, and sometimes I need to stop and drink some water.
I have needed help and taken help from friends and family when Zachary had a doctor’s appointment, and I didn’t want to bring his brother to wait in another waiting room. Or vice versa. Zachary spends so much time at therapy and doctor appointments that when my other child needs to go I feel bad having him tag along as well. If they can be in the comfort of their own home or with my friend’s children having fun, then I’d much rather have that for them.
I am also grateful for when our parents help us with keeping up with daily chores in the house. I used to think I must be a bad mom for not being able to keep it up myself, but I have learned that I don’t think anyone can. There will always be dishes to wash and towels to fold. If they offer or do it, I’m thankful. That just gives us more family time.
We also have had friends and family offer and run errands for us. It’s not always easy to get out of the house with two children, and it’s even harder with autism. Picking up Zachary’s favorite snacks at the store when they are already out is so helpful, or even taking my mail to the post office. Simple things like this are such a blessing to us.
4. Invite us.
Our schedule is busy, and we have to plan events in advance to help prepare our son, but please still invite us to the park or whatever play date you think of.
I know I say no more times then not, but being invited to things certainly makes my family and I feel less alone. I already struggle feeling like I don’t belong with moms that have neurotypical children. Then with autism moms there is such a huge spectrum. It’s hard to find your place. So when I get a random invite to a play date I remember that our family is loved regardless of my child’s autism.
Please know I don’t want to say no—we all want to go out and have fun. However, with after school therapy and a pretty rigid routine, we do what works best for us. The fact that you thought of my children and me and wanted to be with us makes me feel like I did find my place, and I’m exactly where I’m supposed to be. With my family and friends.