You are part of a unique group who may not quite fit in with the traditional autism community.
You may even feel guilty for using the term “autism” when your child is far from “Rain Man.” You may feel like you don’t deserve to use that term when others are far worse off and your child is verbal and may not even need an aide at school.
But your child with high functioning autism has challenges. Plenty of them. Challenges that very much affect him/her and your entire family. They may not always be obvious to everyone around you. But when they are? It’s very apparent.
And you wonder, secretly in your heart, if your child will ever grow up to become a productive, functioning member of society. And you also secretly feel guilty for even considering those thoughts because a mom, shouldn’t you be his biggest cheerleader?
You may hate using the term “autistic” when describing your child because you don’t want it to define who she is. Yet it is part of who she is.
Even though you’ve learned to embrace “autism” because it’s brought answers and help to your child, it’s never easy admitting he is “less than perfect” in society’s eyes. And every time you have to explain to someone, your heart breaks a little.
You might secretly feel guilty that your daughter is autistic. You know there is no blame, especially on yourself, but, as a mom, it’s hard to not have regrets.
Life is always unexpected, but with autistic kids, there’s an additional wrench thrown in the mix. Your child might change overnight and it’s up to you to figure out what’s going on with him. And it’s up to you to figure out a way to help him.
Yes, there are experts and doctors who can advise you. But it’s your job to help your child. You must be an advocate for him in a world that doesn’t make it easy. It’s a scary responsibility.
Everyone has an opinion, even those who have no right to say anything about autism. There are about 4 million results if you google “high functioning autism.” It’s up to you to weed through all the “noise” and figure out what will help your child.
You won’t be perfect, that’s a guarantee. But it’s hard to not try to make it perfect when it’s your child at stake. And then to not feel guilty when something fails.
Your child may be in therapy. Your child may be on medication. Your child may be on a natural supplement regimen and have dietary restrictions. There are so many options you might be doing with your child, and often times, you use a combination.
People don’t realize just how gut-wrenching it is to put your child on medication. They judge and say “Oh you went the ‘easy’ route.” But that is the farthest thing from the truth.
They have no idea how much you agonized about putting your son on meds. How you watched him struggle so and it just broke your heart that other things weren’t helping. How medication was a last resort, but you had to do something to help.
So you finally agreed to meds, but the battle wasn’t over. The right medication had to be found. That required you making careful lists of symptoms to report back to the doctor and many trials and errors. There were dosage changes. And side effects. Even now, you aren’t 100% certain this is the right med for your child, because very rarely is there a magic pill that people seem to think exists.
Medication is not the easy route.
Or you may have chosen a natural route. This might involve supplements your child needs to take daily (something he isn’t very fond of, creating yet another daily challenge). And there may be diet changes, perhaps a gluten free, dairy free diet, which is a lot of work, time-consuming, and expensive.
There are some days when you just want to quit.
But you love your child so much and would do just about anything for him or her. You so badly want your child to succeed in life!
You worry that you aren’t doing enough. But you can barely handle what you are already doing.
Your heart breaks for him when he is struggling and you rejoice when he has a victory. You inwardly cry with her when she is teased or rejected by other children (and also fume and make all sorts of inward threats to the “evil” child who hurt your own). And you are beyond thrilled when you finally see him making a friend.
People take for granted things that amaze you. When your child acknowledges your feelings or volunteers a hug, you find yourself giddy with joy!
It can be very lonely to have a child with autism. You can’t just go on a playdate with another mom and her children because you don’t know what your child will do. And while unfortunately there are more children diagnosed with autism today than ever before, you don’t have the connections everyone seems to think you have with the autistic community. You don’t have access to support from other moms who understand.
No, you often feel very very alone.
Sometimes you catch yourself watching other kids your child’s age and secretly wish your child was like them. Then you feel bad for even thinking that and quickly remind yourself just how much you love your child.
People don’t realize just how amazing your autistic child can be. She may have incredible talents and have so much to offer; she just does things differently than others. And while your heart loves to see that talent, you also ache because you wish other people could see and get to know who your child really is.
You forget to take care of yourself in the midst of caring for your child and the rest of your family. Yet you must not! You are so important to your child and her well-being and that’s even more reason for you to let go regularly and do something for you! But how do you fit yet one more thing into your already overwhelmed life?
Most of all, you love your child with a fiercely protective mother-bear nature that takes on a new meaning when your child has high functioning autism.
Dear Mom who has a child with high functioning autism.
I get it. My 12-year-old son, Nathan, was diagnosed with high functioning autism 2 years ago.
Every one of the things I’ve mentioned here has been true for me.
My heart goes out to you. It’s not easy. But You. Are. Not. Alone.
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