Our days consist of most of the same things the average family does on a day to day basis. My children go to school, they have doctor visits, they go to parks, playgrounds, restaurants, school activities, we go on vacations, road trips, and at home we do what most typical families do too. We enjoy the occasional kitchen mess while experimenting with a few simple recipes, we play board games and we love movie nights. For the holidays we decorate, we play music, we have fun. I believe that regardless to medical condition, gender or age, discipline is important. I work very hard to teach all of my children manners, compassion, respect and appreciation. Above all I love my children exactly for whom they are. They are perfect for me.
I’m guessing families do most of those things if not at least some of those things. Now, do you want to know how we are different? I am very willing to share. I am willing to share but not so that anyone can feel sorry or so that anyone can judge. Not so that you can thank God that it’s not you or your family and definitely not so that you can use us as an example when trying to teach your children anything that would make us seem like less, talking about how “other people don’t have it like you do… take this family (my family) for an example.” If that is in your nature, I am going to ask that you take a second… breath in, breath all that out, then read. I want you to know so that if you ever see me and my family or someone else and their family whom is similar to mine that you know better, that you don’t judge and that you offer a smile and a silent prayer. I want you to know so that you can educate your children and show them that it is ok to be curious, ok to want to know about something different, ok to ask but that it is NEVER ok to be rude, cruel or feel like they are above all this. Nobody is.
Ready? Did you take that breath? Ok…
I wake up in the morning and put on my symbolic running shoes as the day will feel like I am just running to catch up with the rest of the world. I get my kids ready, my daughter knows the morning routine on her own so she is very helpful with pouring cereal bowls or making waffles for breakfast. She is 12 and her assistance during breakfast is huge. I have to give my two boys a shower, they are 9 and 11. I have to dress my 11 year old from head to toe because he doesn’t do it on his own yet, key word here… YET. We are working on it and he can but only when there is plenty of time for repetition. I make sure that I double diaper him because I arrive at his school last and that way there is less of a chance of any leakage.
Off I go, to 3 different schools. It has always been this way. Last year was the first time ever that I had two in one school and I loved it. I drop my daughter off, then my 9-year-old, then off to my 11-year-old’s school. On the way there, we have good days, bad days, horrible days and fantastic days filled with laughter and one sided conversations. I do all the talking because he is non-verbal. He has come such a long way. A few years ago mornings felt like hell. And I mean, I can’t breathe, I can’t stop crying, I feel so helpless, I want somebody to tell me why he does this, type hell. My son would beat himself in the face so badly that I’d have to pull over after driving less than a mile in order to hold him because he was pounding at his temples with his fists. I’d check diaper, clothing, tags, shoes, socks, seat belt, ears, nose, head. I needed to make sure nothing was itching him, that he had no bark or anything stuck in his shoes, that his seat belt had not pinched him, that there wasn’t anything in his ears and that he was not hurt. I would change the temperature, if the heater or AC was on I’d turn it off, if it was off I’d turn it on. If the radio was on I’d turn it off, if it smelled funny I’d open a window. I had no clue why he did this. It was painful to watch him do this to himself, it was painful as his mother not to be able to figure out why in order to help him, it was hell. I was literally ready to go get a prescription for some antidepressants because watching my son do this was LITERALLY killing me. I am very thin to begin with but at one point I reached a very dangerous weight were I was a size 0 and I am 5’10. I needed to figure out a way to cope with this while working with him to stop this behavior I didn’t understand but that needed attention and needed to stop because he was going to hurt himself too badly. I didn’t get medicated. I prayed, I did so really hard. I would stop the car, work with my son, close the door and before getting back in my car I would scream at the top of my lungs to God, WHERE ARE YOU? HELP ME! This is my baby and YOU are the only one that can help me now, PLEASE make me feel whatever he is feeling that makes him do this so he doesn’t have to endure this! I sobbed, I begged, I wiped the tears, took a deep breath and got back in my car.
I worked so hard with that and finally it paid off. On occasion he still hits himself or bites himself but it’s not as bad as it was years ago and now as long as I know it’s none of the above mentioned I can just firmly ask him to STOP! That may not be the way but he understands and stops hitting. I sing to him on the way to school, he covers his ears but if I stop because I think my horrible singing is bothering him, he gently touches my mouth so I can sing again.
If while my children were at school I didn’t have a chance to go food shopping and I go with them, it can be a very nice trip where we come out of the supermarket with two full carts and the only problem is upon exit when I have to figure out how the heck I’m going to fit all those groceries in my car or like this…
We walk in, I really have to do groceries and 2 out of my 3 kids like to go food shopping because they know we pretty much buy the store but suddenly my middle son is not having it. We haven’t even started and he is biting himself, throwing himself on the ground or hitting himself. I am not sure if it is the lights, the people, the smells, the sounds, that there is so much of everything or that once he makes a sound… people start to stare and he freaks out. I can normally get this under control pretty quickly. Believe it or not I talk to him, I tell him that I have to get this done, I don’t know what is bothering him, I know it must be difficult for him but this is something we have no other choice but to do right now. I have him cover his ears, I sit him inside a cart, YES an 11-year-old inside the cart while my daughter pushes the other. That alone gets the stares and the comments going like people really know what in the world is going on in our lives. He sits in there, covers his ears and any time I go by something that I know he likes I drop it in his basket and he protects it. I think that’s super cute.
Sometimes I can’t get it under control that quick or that easily and the shopping trip is shortened, only essentials and pretty much running through the supermarket looking like I stole something and I just have to get out of there.
If we have company and it is not someone he is used to he may or may not be ok with it. Sometimes the fact that people unintentionally talk to him like he’s an idiot– louder slurred words really upsets him. It upsets me! I know they just don’t know any better but then they wonder why he is flipping out and in their eyes this “kid” is a handful. Respect and a certain level of equality go a long way. On occasion I simply change my speech pattern and talk to them the way they are talking to my son until they ask me why I’m talking that way. I smile and they get the point. And what is it with people that are not family or even close friends and touching children when talking to them? Rubbing a shoulder or touching the face or hair? That in my eyes is an invasion, autistic, typical, adult or child. I wouldn’t do that to some random kid why would anyone do it to a child they suddenly feel sorry for? I say feel sorry for because people have actually said it. “Awe, poor thing.” No, not poor thing, not poor kid, not poor anything. This child has everything I could possibly give him. He has two very loving and caring siblings and a mother that can be gentle enough to calm him down or make him feel better when he is hurt, a mother that could eat ANYONE alive on the spot if they are hurting him or being unfair to him. At home he has all the toys, games, food and attention he could possibly need. There is nothing “poor” about my beautiful son. I know it’s not something people do on purpose so the purpose of me saying it here is so that if you are one of “those” you cut it out because it can be offensive.
I go everywhere with my 3 children. Obviously if it’s not a place appropriate for children I don’t impose but if it’s a matter of stares and ignorance then I feel that is other people’s problem and they need to work on that. I am not going to stay home in hiding so that other people feel “comfortable” with seeing every day things. I expose my children so people are exposed to this new way of being. This is very real. This is in my life. I live here. I share this place with all of you so this is a part of your life too. You just don’t get to take it home with you. 🙂 It is mine and I am learning every day how to make it work.
My youngest son is also in the spectrum. I hardly ever talk about it because it is something that is really not obvious. The only time people realize there is something different about him is when they start to talk to him and all of a sudden it’s like talking to an encyclopedia. Lots of facts, information they didn’t even know and lack of interest in the typical 9-year-old things. It’s like talking to a little old man sometimes. I love it. He challenges my mind every day. He talks about things that I have to look in to because I didn’t even know they existed. He asks questions non-stop. They aren’t simple questions or even questions that I can just answer with a yes or no. They are things that I have to keep the laptop handy in order to look into them. I think it’s great. I learn so much every day from him. Do you know what an ungalate is? That’s a simple one. He told me, “it literally refers to a hoofed animal.” Probably something you and I could have lived without knowing but now we know something new.
My 12-year-old daughter and I talk about everything. She is very smart academically and very wise for her age. We are silly, we talk about boys, we do our hair and nails, we talk about fashion and we have special nights where it’s just us to watch a movie or catch up with one of our favorite shows. She has a level of understanding about things that makes me feel lucky and I’m always very impressed by it. She talks to me about the future, she asks about her 2 brothers’ future and she is so honest that I feel the need to be just as honest with her whenever she asks anything. I never give her more information than she needs and never too much as to burden her but I don’t lie to my daughter (or to any of them for that matter). My daughter is not my friend and she knows I’m not her friend either. I am her mother, she is my daughter that is much more meaningful than anything a friend could ever be in our lives. I am her biggest fan and I want her to have a great life. No matter what I will always have her back and she knows this.
So you see… my life is not that different than yours yet so different on many levels. I want the same wonderful things for my children that you do. I love my children with everything I’ve got as I’m sure you do if you have children. I want to raise productive citizens just like you do. I do the same every day things you do. I just have to take the long way to get there…
The best way to describe what my children do for me is that they are my body, mind and soul. My middle son is my body–I have to work hard physically to get things done, to help him and the stronger he gets the stronger I get. It’s like training for any sport the more you do it the better you get at it and the more you develop endurance. My youngest son is my mind– he will keep me sharp and learning because of the way he is and my daughter is my soul– so even keeled, so compassionate, so much depth, my rock!
This link is how things were years ago (referenced)