I know it has been over a year since this was updated. We have been in an intensive program. It is an educational therapy program and it has been womderful for us! We go through a nonprofit, Christian organization in our town. I put a link to what educational learning therapy is. I hope you all can find something as great as we did. No, my son is not up to grade level. He still struggles with abstract concepts but it is slowly getting easier for him. While not cheap is is making our days just a little bit better.
We have quite a few kids in our lives who live with Autism. They live it because they were diagnosed with Autism or they are a sibling of the child with the diagnosis. As I look around at our society today, that is supposed to welcome all those with a disability, Autism seems to be the only disability that needs to be cured according the general consensus. Look it up. There are hundreds of ways to cure your child of Autism. From diets to heavy metal cleanses and other wacky theories (actually as a science major I should say hypothesis because many of these “cures” have NEVER been studied) WHAT THE @#$%$#@#!?!
What is that saying to these kids as they grow up? A logical conclusion is “You have a disease and we need to fix you.” It makes me sad that this is one of the last groups of people with disabilities that still struggle with this perception in 2016. Many people will deny their perceptions about Autism until you put them in a corner with their own “logic”.
So for all those precious kids I know and love with Autism here is what I want to say to you. You are all precious just the way you are. You are precious to God, your family, your friends, and to me. You have struggles navigating this world but you are little super heroes, every single one of you. You give so much to your own little world. You give joy, you give beauty, and you give a different perspective on the world around you.
To the parents I understand the struggle. I understand the trying times with your kids. Those difficult times that seem to come up every single day and never have an ending. The anxious feeling when you go out or the heartbroken feeling of declining yet another invitation because you don’t want to have to navigate another social situation. I understand the guilty feeling coming from all those voices telling you it is your fault. To you I say the following: You have done NOTHING wrong. You did not cause your child to have Autism. Contrary to what society is telling you, it is NOT your FAULT. Society does not tell a parent of a child with down syndrome or triple X syndrome that is was their fault their child has a disability. Just chew on that reality for a while. Parents, you are my super heroes as well. You may not hear it all the time but you are rocking this parent thing. Thank you for your love, your time, and your effort in caring for your child. This is not an easy gig. You are precious to your child with Autism.
So for this month I challenge you to challenge the status quo. To fight for these kids and adults to be respected as they are. To be understood as they are. To be able to come into society and be welcomed as they are.
PS I because I understand society likes to hotly debate Autism (unlike other disabilities) I will not be taking comments on this post. I don’t have the time. I have my own children to raise. But please like the post, share the post, pin the post, tweet the post ect. Hopefully a good dialogue can commence in your own small spheres.
This is a rant by the mom trying to teach reading and she has had enough of it today. This is written in the moment. This is also for all those moms trying to do what I am trying to do. You are not alone. I know the tears you have shed. I know the feeling when you have had to apologize for your attitude. I know and, more importantly, God knows. On to my rant.
Trying to learn to read English is tough enough without being a kid who is completely wired differently trying to navigate all the rules. We have been cruising along nicely until we had to jump up a level. Every time we need to do this it is as if all the work we JUST learned goes out the door. The font is different, the pages are longer, and the eyes keep trying to scan for familiar words at the expense of focusing on the word that is supposed to be read. Even sight words are now sounded out. Right now I have quit for the day and am waiting for Dad to come home from work to finish the small, ten page, with pictures chapter. (By the way Mary Pope Osborne I really do love your books and they have been a lifesaver in our reading adventures.)
Part of my frustration is that no one in my world really knows what it is like to teach a child with a disability to read. I get all sorts of well meaning comments on what program I should use or how I should go about it. Yet no one is willing to spend a day trying to get this kid to do his reading on a level that is actually challenging.
Can you tell I am at my breaking point? Coffee and chocolate is the thing that is going to fix this attitude at the moment. That and some instrumental music.
Mentalfloss.com has some fun videos about why English is so HARD. Go check them out. I basically blame all the academics for the atrocity that English is today. I would love a reboot of the language.
Here is an out of the box way my son uses his blocks to finish math. He came up with this himself.
Ah yes the holiday melt down or melt downs. To be truthful it should be in the plural form. You have to deal with one in each of the stores you visit. You get to deal with one as soon as your child is about to sit on Santa’s lap (even though it was their idea to stand in line and promised this year would be different). You smuggle in the mail and secretly dispose of the toy catalog just so it will not be a source of conversation for the next 6 months. You are so blessed with several melt downs on Thanksgiving and even more on Christmas. Social media is not helping with all those cute, cherub faces enjoying the season as it was meant to be (not to mention said cherubs are actually sitting still for a photograph). You don’t post pictures of what is happening in your house. Actually you think you probably shouldn’t post those pictures. You don’t know what government agency might be watching your profile. Another reason is that you may want to refuse the pity “likes” and the “so sorry” replies. Holidays feel more like going to WAR! Your family still doesn’t understand what you have to go through just to prep that little “angel” to behave at grandma’s house. The weeks of practice that you have to orchestrate leading up to the family holiday meal are exhausting. Honestly Daniel Tiger’s Neighborhood songs are becoming more and more an awesome tool to use with your 11 year old. You still pack a bag of favorite things and extra clothes even though the baby stage is long gone but you keep it in the car. You never know this may be the year when things go as planned (here’s hoping). You have candy already unwrapped in your purse to dole out just so you can sit through one Candle Light service without people turning to look at that family making all the noise at such a hallowed event. Silence is golden and no one knows that more than you.
Yet between those melt downs are magical moments. That moment when your child who will not eat anything white does not throw a fit when served whipping cream on the pumpkin pie AND eats the whipping cream on the pumpkin pie! That moment when your child who has an aversion to hugs climbs into your lap just to watch the Christmas tree lights. That moment when they actually did the Thanksgiving or Christmas craft at school AND it makes it home in one piece AND they give permission to have it hanging on the fridge or the tree. That moment when they stop and just watch the snow fall. The moment when your child, who covers their ears every Sunday because the singing is too loud, sings a Christmas carol with all the fervor of the season. Those moments are precious to any mom or dad but for you they truly are rainbows after storms.
I pray for all of you that you will experience rainbows. I hope you will look for those rainbows and just stop to enjoy.
Awe yes, like we moms need one more thing to feel guilty over here comes the “eat whole foods or your kids will DIE” and the various other food movements. A bit harsh and overboard on my part but I have a reason. My reason is that we have to be on a wheat free diet. My kids are allergic, blood tested, and IgE certified. We found out 10 years ago and have been gluten free ever since. (We are gluten free because it is just easier. And have you ever tried to make rye bread with just rye? It isn’t a tasty endeavor.)
Back on track now. 10 years ago the availability of gluten free stunk! Tapioca bread……I rest my case. I had to go whole food not by choice. Let me tell you it is tough! Making sure you have everything in stock and at all times. Quick meals are not a thing. I was fine with it and learned how to make things work and to make them taste good (see me over at madscienceofglutenfree.wordpress.com).
As a veteran in the whole foods movement I am giving you some advice. Don’t stress it. You have too much on your plate with a child or two or three with a disability. Yes cook healthy food and don’t reach for that box of instant dinner every night. Yet give yourself a break. Buying your loaf of bread isn’t going to kill your family. There are healthier options at the stores now. That hot dog or corn dog for lunch isn’t going to kill them either. Cereal for breakfast is okay.
Also moms don’t give yourself false guilt when your kid is a super picky eater that is likely a cause of the disability. I have worked with enough families to know that it just isn’t worth the fight every…….single……meal. I worked with a lovely girl with autism who would only eat tomato soup, eggs, and applesauce. For a treat I could take her to go get fries or pizza and after a few years even pizza was out. Texture was a huge deal to this child. So much so that it affect her eating behaviors.
Yes, the above example is an extreme case. I just want to let you know that you can let it go. In fact you can let go of all those food movements that have popped up in the last 10 years. Yep ALL of them.
Free yourself mom and dad. It is okay to eat at that fast food restaurant. It is okay to have boxed mac and cheese with dinner. I envy you moms with so much freedom. Don’t trade that freedom for chains. By giving into those chains you are on shaky ground of breeding discontent. These food movements will never feed the soul. They only feed frustration. Frustration that others are not following your food rules. Frustration that everything on the kids menu is off limits. Frustration can lead to a sort of food narcissism. The kind that talks about how your food choice is superior to everything else. Trust me I have had to endure my fair share. As a General in whole food eating I give you permission to not feel guilty. I give you permission to be free and to be you and to have fun with meals and to “cheat”. Go forth and eat in FRRREEEEDDDDOOOOMMMMM!
There seems to be a trend going around on the internet lately in which it is pretty much a bad thing to be worried about our kids’ happiness and trying to keep them happy all the time. Pinterest is full of ideas on how to keep your kid happy. The premise I agree with but in my world I do not see parents doing what the bloggers are lamenting they are doing.
Now maybe it is just because my world is small and has gotten smaller now that I do not work with people with disabilities. In my world I just don’t see having to keep kids happy a thing with parents of kid with disabilities. We are in a different realm. From the very beginning of a diagnosis we are looking to the future; a future without us one day. A future were they are going to have to handle disappointment, shattered dreams, and people who just don’t get them…… at all.
We deal with the tantrums and work through them. We know our kids can’t be doing this in school or the work place and we need them to be able to self regulate for a productive future. We need them to work through the anger. We work through the sadness because it will be a companion following disappointment. We work towards feelings of pride because it is going to be the little conquests that make up a mountain top experience. Yes we want our kids to be happy but for them to be happy all the time is not our reality.
Emotions are more intense in my world. Thus I don’t care about how happy my child is. If I cared how happy he was I would have boughten the chocolate milk instead of a new bike. Yes we almost had a melt down because I would not buy the chocolate milk at the store because we were buying a bike which he needed since he was way to big for his other one. So you see happiness is not on our radar all the time. If I cared about happiness now I would buy him a pack of gum every….single….time….we went into a store.
Our happiness meter is future oriented. Kuddos to all you parents who are struggling with the fluctuating emotions. You are teaching them skills that many of their typical developing peers are not learning. Good job parents with challenging kids. You can just skip over all those articles because most likely they don’t apply to you. You are in the future zone and doing all you can to help your child grow into a productive adult.