8.31.2011

...Not fair for the "NORMAL" kids?!!! Are you KIDDING ME?!!...



So i've had quite an eventful couple weeks, starting with recker missing many therapies because of being sooooo sick. After about two weeks of sick bebe he is finally feeling better, just in time for me to get pink eye last week. So i went to the doctor, and as im sitting there in the waiting room the lady next to me asked me if i went to Yale (because i had my Yale School of Medicine shirt on) i told her, no and that my son has Autism and that Recker is apart of their Autism Research Program, then i proceeded to tell her what i do for work and how much i love it.

This is the shortened version of our conversation...

Ignorant Woman: "Oh my nephew is autism (yes she said it like that, should have been my first clue) and they try to stick in in with the normal kids but i just don't think it makes any sense, its not doing ANYONE any good having him with NORMAL kids, he should be in a school with other kids like how he is. Where i lived in Michigan we had separate schools--- " (i cut her off)

Me: "Well yeah we usually do try and integrate them with the "typical" classes at least through specials or if they can handle it, a lot of kids with disabilities or ASD are fully included in the classrooms either by themselves or with an aide, which is awesome and i think what most parent's and teachers goal is. Also there are sooo many LAWS ensuring that children with disablities get the same opportunities of education that "typical" kids do. They are guaranteed the right to be in a classroom that will challenge them and help them learn and grow whether it be a fully inclusion or not.


Ignorant Woman: "Yeah well my son has a autism kid in his class with him and he has an aide with him all the time, and he wears this heavy vest thing. I just honestly dont think its fair for all the 'NORMAL' kids in the class. The autism kid is so distracting with his aide, vest and he makes all kinds of noises and flaps his hands and stuff. Its just NOT FAIR FOR THE NORMAL KIDS to have to deal with that while they are trying to learn. Its just doing anyone any good having those kids in normal classes with normal---" (the doctor came out and called her name)

After she went back into the back room, i left the doctors office without being seen because i was soooo upset. I was sick to my stomach, furious, sad, confused and honestly i didnt want to see that lady again, i was afraid i was going to LOSE it on her! I can not believe that there are people who think like this, and who would actually SAY those things to a MOTHER of a child who has ASD and to someone who works in a special education classroom. I was and still am just sick. I am pretty sensitive but i pride myself when it comes to being tough about things like this, but honestly, im afraid. As a parent of a child with ASD i will be dealing with this for the rest of our lives, how am i going to deal with people this ignorant and horrible? What am i going to do when its MY child that is being disruptive and all the parents doing think its fair that Recker is distracting their kids in class. I have another year to toughen up before he hits preschool. I just honestly can not believe that people actually say some of the things they say, why do they think its ok to say whatever they think to whoever they want? I am just blown away! It reminds me of my mom when she was going through chemo, all the things people would come up to her and say about HER HAIR. We talk about it at work all the time how some people just seriously have nooo FILTERS, and how we are just surprised and mostly disgusted at people thinking they can just say whatever they want.


Well on a lighter BETTER note!....Several of Reck's therapist suggested we try a GFCF (gluten free-caesin free, aka dairy free) diet and we've started part of it. We took Recker off of dairy a few weeks ago and honestly i can NOT even begin to tell you how much it has affected and HELPED him!! Here are just a few examples:

-The other day i walked into his room where he was being SUPER quiet (usually means he's gotten ahold of my something that he's not supposed to have. I walked in there and he was SITTING (let me tell you how just him sitting is amazing, he usually squats or bounces around, never can sit still AT ALL!) he was sitting there STACKING BLOCKS!!!!!! His therapists have worked on his fine motor by stacking blocks and he couldnt even stack 2 blocks, one on top of another. I walked into his room, he is sitting there stacking 3 blocks and i added a couple more and he stacked those. Not only was he stacking, he was doing it in a specific way, making sure it was the colored letter side facing the right way. Jeremy and i just stood there in absolute SHOCK as tears ran down our faces.

-His eye contact has improved tremendously! He is interacting with us sooo much more, in a more intentional way.

-He is showing us what he wants! He will bring us a movie he wants to watch, if he wants to play with the ball he will bring it to us and hand it to me, he brings me books. He will bring me his empty cup, shake it showing me its empty and then hand it to me to refill for him. He has started grabbing our hands and pulling us into his room or the kitchen, trying to communicate that there is something he wants.  HE SEEKS US OUT!

-The best improvement yet is his speech, he babbles and jabbers SOOOO soooo SOooOOoOOo much more! He has started to say "BALL", and yesterday jeremy was eating cookies and recker wanted one so like we do with everything, he said "COOKIE" to recker before he gave him one, and Recker REPEATED IT! he said cookie...HE SAID COOKIE!!! He said it sooooo many times yesterday i was in tears, i heard his voice! that probably sounds weird considering he jabbers all the time, but to hear him say a word again (he hasnt spoken a word since he was 11 months old when he would say "mommommom" and "dadadada") it actually was sooo clear and it sounded like a real word. I mean when he says "ball" and "byebye" its not actually the whole thing, he makes the "B" sound and tries, but the word COOKIE was clear as day.

These examples may seem small and simple to you but to my husband and i, we are just THRILLED and overwhelmed at how much just taking dairy out of recker's diet has helped, Recker has had us in happy tears for the past week or two! We couldn't be happier! I want to try the full GFCF diet and see if it helps more. I am worried though, it seems like such a difficult diet to stick by. But if it will help Recker, Jeremy and i will try anything!



PS....Blakes been on his mission for two years and gets home in less than a month! I was pregnant with Recker when he left, so he has NEVER met him! I cant wait, September 29th they finally get to meet....


12 comments:

  1. that woman needs to be slapped.. HARD.

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  2. Oh this is so upsetting. I know it just ignorance, but I have seen the kind of ignorance and insensitivity that my mom has dealt with over the years because of my brother with special needs. I am so sorry. But karma comes around, and that woman will one day have an experience that gives her more understanding. Heaven knows she needs it.

    I am so happy that things are looking so encouraging for Recker. He's in our prayers.

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  3. That seriously makes me want to slap that lady across the face. My moms sister is severely autistic and at times can be difficult, but we love her more than anything. I am always shocked at the ignorance of people! Hang in there girl:) your amazing!

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  4. Man, I'm sorry to hear that. That poor lady. My sister eats gluten free and has seen has seen tremendous change in her health with IBS and muscle pain. There is a gluten free general store by my house on Val Vista south of Pecos. Also there are a lot of products that are gluten free already. You can rice chex for one price and the rice chex where the box says gluten free but you pay a higher price an it's the exact same product just different packaging. Good luck as you move to that diet. I'm sure you'll see great results as well.

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  5. What a great POST Kayla--just remember some people have not walked the path or taken the journey you and Jeremy are on, so be patient with them they just don't get what a special spirit Reck is--he is going to show us all how to love unconditionally--love you

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  6. Your little guy, Recker, blows me away. He is darling. And I look forward to future posts about how amazing he continues to be Kayla. You are such a wonderful mother, and I admire you. And I am incredibly sorry you found yourself faced with such ignorance.

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  7. I can't imagine how dealing with that woman felt, but I am impressed with how you handled it. You are an amazing woman and mom, Recker is blessed to be your son. So excited to hear all the updates and amazing moments. Hope you all know we love you and you are in our prayers.

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  8. Some people have just that, no filter, they shouldn't be allowed to speak! She needs a humbling experience that's what she needs. Your a wonderful mom and keep doing what your doing Recker will be forever grateful for such great parents! So happy he is showing improvement I'm sure he will grow leaps and bounds!

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  9. the second part of this post made me sooo happy, im soo happy for you guys and for reckers progress!

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  10. I love your cookie story. Zachary was almost four before he spoke and said apple. It wasn't mom or dad, but it didn't matter. It was awesome. His speech therapist was so excited we just stared at each other. We were speechless. I almost find joy in pointing out someones ignorance regarding autism. My favorite is telling them not to stare because they aren't helping my situation when dealing with a public tantrum. I like loosing my filter when people starting saying nonsense.

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  11. I haven't been to my blog for such a long time...but this morning I am up early and needed to get a recipe to email to a friend....and I looked over at my list of Blogs and saw yours....so I visited you. I am so excited for you and that you have been seeing changes in Recker's progress.....I have heard about diet making a huge difference...I am so interested in your journey. I taught SpEd for such a long time...and I loved my kids...even loved writing IEP's....but the thing I miss is seeing them do the small things....that aren't small...they are HUGE...as they progress on their own paths. Hearing cookie for the first time....I would cry too....in fact I am, just thinking about it. Kayla, know that you are loved from afar and I am cheering for you and your little family from the sideline....Recker is soooo lucky to have you for a mom ....and to have such a supportive family!!!

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  12. The woman was an IDIOT in how she chose to express herself, but there are in fact circumstances where full inclusion is NOT appropriate.

    I have seen many times children with autism in a regular education classroom and all the well meaning and support in the world still does not make it appropriate. Sensory over-load, academics too high etc are too much. At times a child does need a classroom specifically designed for their needs - highly structured with visual schedule, sensory breaks, material taught in a way that they will best learn, less kids etc. A class can have up to 31 kids. That's hard enough and over-whelming for kids who do not have special needs.

    It is hard to accept, but when it is inappropriate for the child to be in regular education, yes, it is NOT fair to the other students who are also trying to learn. They have a right to an education as well, same as a child with autism. Adaptations, accommodations, behavior plans, modifications, etc etc to help a child with autism be in a regular education classroom - if this is successful, wonderful!

    What is not ok and not right is when a child with autism cannot handle a regular education classroom, yet the parents bully and insist it will happen, and the rest of the kids in class suffer. Their learning is constantly interrupted by ONE student.

    Parents sue the district and bully a district into paying for insane things. My child would benefit from these extras as. So why aren't I sueing for these things?

    What is really sad is it is the kid who suffers. Placed in a classroom that is completely inappropriate and has to endure it.

    My daughter belongs to an outside group. A girl with "high functioning autism" is also in this group. The adult in charge has to stop about every 30 seconds to deal with this girl. If modifications are helpful that is wonderful. My daughter can see that those are just part of what some kids and adults need.

    But instead what my daughter sees is a girl constantly 'ruining' things for everyone. Yes, it is ruining the experience for the other kids because it is not appropriate.

    My daughter keeps asking me why this girl is allowed to stay in their group. What do I say? Because she has autism, the entire group needs to revolve around her? The organization offered a special needs group for this girl to join - run by someone with experience with special needs. The parents said no. Yet we all have to deal with this girl. We are leaving the group because my daughter hates going now. It is NOT because the girl has autism or has to wear a weighted vest or have a picture schedule. We could care if she has to come dressed as an astronaut in order to be appropriate, the bottom line is she is completely disruptive and has ruined it for the other girls.

    If a child with autism wanted to play baseball but needed the coach to sign off on a behavior plan, have the parent at bat to coach the child how to bat, run with the child to the base, hold up a poster size sign to "RUN" when it was their turn to run to the next base, let them adapt their uniform a little because tactile defensive - no problem. I wouldn't care, the kids wouldn't care, the other parents would have no problem with this I am sure. The very (yes, very) small percentage of parents who might have a problem with it are not worth even caring about.

    But if you try and try to have the child play baseball and the game is constantly stopped to deal with inappropriate behavior, yes, there IS a problem and it is not fair to the other kids.

    I know I'll likely get hateful responses for my post because I am saying something that might be construed as negative - but unless there is open and honest discussion things will never get fully better for kids with autism.

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