Let me start with this statement: Yes, my children are high functioning. I AM TOTALLY BLESSED. I have come to learn that you need to be thankful for EVERYTHING in your life. There is always someone who doesn’t have it as good as you. Things can always get worse or be worse. So I am totally grateful for the hand I have been dealt.
Every day has a struggle of it’s own. Some struggles actually carry through a few days, or weeks, or months. Daily struggles include things like my daughter fighting me when I brush her hair. She has severe sensory issues. Stores are too loud, toothbrushes hurt, hair brushing hurts, the sun is too bright, and warm and cool temps to us are cold and hot temps to her. She needs to wear sunglasses, earphones (the ballistic kind) in loud stores, and I have to go through lots of hassles when brushing her hair and teeth. It’s just how she is. And we have adapted our lives to fit her needs. That’s what autism parents do. We don’t change our children; we change our lives and ourselves to fit our children!
My son is super sensitive emotionally. Just recently, while visiting with my parents, my brother and his wife came with their two kids. My son LOVES his cousins, but particularly my nephew. He is attached and just loves it when he gets to spend time and play with him. When they left, my son bawled. His little, tender heart was broken into pieces. What did I do?I packed the kids up and took them for supper with a special treat of ice cream. It took my son’s attention off of the fact that his best bud just left. My son has sensory issues as well. He is under-stimulated, which means that he needs extra sensory input. He is a dare-devil and jumps off things (yes, I sometimes almost have a heart attack). He also runs laps, hums constantly, and sometimes spins. Yep, the humming gets annoying, but I put up with it. Most of the time I try to get his attention on something else, or actually get him singing a song (so much better than a constant, non-melodic hum, and we have fun singing together.) He is also a picky eater. He is a vegetarian by choice. He can’t stand the smell and taste of meat. He actually gags. The smell of spices, like the ones in spaghetti sauce, makes him gag. We have actually had him throw up at a restaurant into his plate of food because of the smell of something one of us was eating. People don’t understand that. They get disgusted and give us appalled looks. I mean, how dare we bring our kids in public if they are going to make such a disruption! Sarcastic eye rolling. People can be mean and cruel. People actually think that we should avoid going out in public because our children may (and usually do) cause some sort of raucous. I guess I don’t deserve to have a life.
My son can’t stand to have his hair cut, either. He says it hurts. Sometimes he cries so hard that he pukes. Also, the feeling of the hair on his face and his body is so horrid that he has to take an immediate shower after a hair cut. We used to have to hold him down. Now he sits still, but I can see the effort it takes him to sit there. He also has the kindest heart ever. He is currently growing his hair out because he wants to donate it to “kids who don’t have hair”. Not sure where he saw it, but he has it in his head that he is blessed with lots of thick hair and he wants to give it away. (I think he doesn’t want to get it cut because of the whole hair-cutting saga, but I can’t say no to a child with good intentions.) I am pretty sure I will be able to get two, maybe three, donations out of his thick, crazy hair. I am blessed to have a child with such a huge, caring heart.
Our kids are also very gifted. My son is a math whiz and is in gifted class. I can’t wait to see what he is going to become! My daughter is a talented artist and storyteller. She changes her voice for every character she makes up. I have no doubt that she will be telling stories for years to come, and possibly even illustrating books! It’s exciting to see them blossom and their talents evolve! They have some social issues, but we help them deal and raise awareness so that the public understands.
Let us talk about the ongoing issues. The battles that we fight over a period of time can be grueling, heart wrenching, and maddening. Recently, because I was accepted into nursing school, I started the process of putting my children in before and after school care on post. So, we got SNAP-ed. That means that we had to have a meeting about our kids because they are autistic and they want to make sure that they “can accommodate” them. (This is a whole load of bullcrap, because it is really a meeting to see how they can come up with excuses to NOT accommodate them.) Our children have been on a gluten free diet for over 3 years. We have completely changed our lifestyle (for the better, seriously) to see if a whole foods, gluten free diet would help our kids out. Boy did it ever help. So, when I got all the forms for before and after school care they handed me a diet form for the doctor to fill out, which she did. Child Youth Services (CYS for short) is currently fighting with me because they don’t think the kids need to be on a gluten free diet because they do not have Celiac’s Disease. According to them, only people with Celiac’s should eat a gluten free diet. I am fighting them tooth and toenail. I even have an intake interview with Autism Speaks. One of their experts even said that there were some lawyers that would love to get a hold of a case like this. So, just because CYS doesn’t want to withhold gluten filled food products, I have appointments every day next week and several others throughout the month of July with specialists, dieticians, and probably lawyers. Oh, and let’s not forget the fact that I will be knocking on the installation command’s door to make my formal complaint…and the IG complaint I plan on filing if they deny my kids a gluten free diet. (Whew, I have a long month ahead of me!) And I am doing all this while my husband is fighting in a war overseas! Does that make me better? NO. Does it mean that I am stronger? NO! But it does mean that I am strong. It does mean that I am a fighter. It does mean that I will do ALL THAT I CAN to fight for my kids, to make sure they are getting the best I can provide, the best they deserve, and the understanding that is due them. They deserve your understanding, and I deserve your respect, not your condescension! They don’t deserve to be treated like every other child; they aren’t like every other child. They are different in many spectacular (and sometime peculiar) ways.
Are my kids better because they are high functioning? No. Do I believe I am a better parent because my kids are “high functioning”? Heck no! Those parents who have children that are not PDD-NOS or Asperger’s, and are ASD deserve my respect, and I give it. Their road is tougher, longer, and more difficult. Those parents deserve a medal of honor in parenting and their names written in lights. I don’t believe I deserve that, but they definitely do. I have friends who fight that battle. That is their fight, and they are brave ASD Warriors.
That being said: don’t imply that I don’t deserve my children, especially if you don’t have any children and haven’t even begun to understand parenting. I fight hard for my children, and God gave them to me for safekeeping. I believe that I am doing that to the best of my ability. I am not perfect, but I am doing the best I can with the strength God gives me every day. And I know it is HIS strength, not mine.
Many Kind Regards,
Fewer things get mom's of children with autism more upset than being accused of bad parenting. See how Jodi feels about being called a Jenny McCarthy wannabe.