We’ve been on this journey for five years, and while every day provides its challenges, reminding myself of these things helps us get through the hard times. My son, Channing, is almost six and nonspeaking. We have difficulty doing things that aren’t a part of our normal routine, but we always want to give him the same experiences and opportunities as his peers and his sister. Being the mom of an autistic child isn't easy, but here's 10 things I've learned that have helped us navigate this journey a little easier.
1. It's OK to say no.
You know your child better than anyone. If a situation is going to be hard on them and you aren't prepared to go down that road, don't. Yes, we should always push outside our comfort zones and try things with our kids to see if it's something they enjoy. However, you should never do it when you haven't fully prepared. It's OK to say no. Say no to the birthday party everyone is going to and you hate to miss, say no to a play date you aren't up for. It's OK. I know it's hard and you want to say yes, and the day will come when you can. But remember it's OK to say no and sometimes it really is best if you do.
2. Enjoy each stage.
This is a hard one for me as we recently went through a stage of sleepless nights and a need for me to lay in bed with Channing until he fell asleep. It was a quick stage, but while it was going on, it was exhausting. However, I did not for one second take advantage of those snuggles. I never get those snuggles and they were so needed and loved. Now, that stage is over. I miss the snuggles but I am so glad I chose to relish in them. Some stages will not pass so quickly, and you will pray they would... but remember, they will pass. And what could come next may be even harder than the stage you are currently in, so do your best to enjoy what you can out of each stage.
3. Ask for help.
I straight up moved next door to my mama within months of Channing's diagnosis. I needed help. I still need help. Every.Single.Day. I am not one of those moms who can take multiple kids on outings by herself (see #1... I normally have to say no). I have to ask for help, and I have to be okay with receiving help.
4. Take time for yourself.
This is 100% easier said than done and I know some of you don't even have the option of time for yourself. However, it is so important. I never ever imagined I would be a stay-at-home mom. I never wanted to be a stay-at-home mom. But here I am... and I know that to keep from going bonkers, I have to take time for myself. Even if it's a 50-minute Barre class, a 10-minute drive around the block, or an entire weekend away. I need it, and I need it as often as I can get it. And I can bet you do too.
5. Never give up.
Never throw in the towel. There are times when I think I cannot do it any more. I can't keep talking to him in the backseat when he doesn't respond. Will he ever respond? Why am I even talking and asking him questions I know he won't answer? But in times like these, I remember... he is counting on me. He needs me. I can't give up on him and I can never let him think for a second I would. So I'll keep talking to him, I'll keep asking him those questions and I will never give up hope that one day he will say, "Thank you for always talking to me, Mommy, even when I didn’t respond.”
6. There are understanding people, and there are uninformed people.
You will come across some seriously understanding people who will let you jump in front of them in line when your child is upset just so you can leave the store faster. You will also come across seriously uninformed people who will say, "Awww, someone isn't going to get a turn on the train if they don't wait patiently and be still." Yes, someone said that to us. Someone very uniformed. You have to remember that people don’t always understand your situation and may say things that are incredibly hurtful and flat-out wrong. Thank the kind ones and ignore the others. They don't deserve an explanation and they probably wouldn't understand it if you gave them one.
7. Don't compare your child's autism journey with those of other children with autism.
I have struggled with this. Every child with autism is different. Every child's journey with autism is different. I was constantly comparing Channing to those other children with autism and trying to figure out how they are able to talk and he isn't. Then I realized some of them had certain behavioral problems that were extremely difficult to overcome that we did not have with Channing. So while I was just wishing my son would talk like their child, they were probably wishing their child would behave like mine. All of that to say, everyone is on their own path when it comes to ASD. No two are alike, and you can't compare them.
8. Try new things, but have a back-up plan.
As I said in #1, it's OK to say no. But it is also OK to say yes... when you are ready. However, always have a back-up plan. It will reduce your anxiety when trying new things and hopefully set you up to succeed instead of fail. For example, we recently went to Carowinds,) an amusement park here in Charlotte, North Carolina. We drove two separate cars to the park, packed two bags of Skittles, a change of clothes, and pull-ups. We ended up not needing the two separate cars, the change of clothes, or the pull-ups... but we did tap into both bags of Skittles! I always knew in the back of my mind that if one child was having fun and the other wasn't, we had the option to send one home. It kept my anxiety down and we had a great visit. A back-up plan is a must, in my opinion. I also always prepare myself for the worst and am normally pleasantly surprised (normally).
9. Advocate, advocate, advocate.
No one is going to fight for your child like you are. If you want something to happen, you're going to have to fight. Whether it's at the doctor's office and you feel like you aren't being heard, or at therapy and you feel like the therapist isn't a good match. No matter what it is, you will have to do the advocating if you want to see the change. You can. And they are worth it.
10. Don't dwell on the future.
I really need a tattoo of this one. I am the world's worst at dwelling on the future. One look at my google search history would prove as much. However, I really feel like I am the happiest and most appreciative when I do not focus on the "what ifs”. When I think about the positives going on here and now, I find the strength to keep going. When I think about the future and the "unknown", I want to give up. So, I say focus on the positives and remember the future is completely out of our control anyway. (Unless you find a way to see into the future, then let me know.)