A Trip Down Memory Lane – Part 2

A Trip Down Memory Lane – Part 1
May 4, 2015
A Trip Down Memory Lane – Part 3-The Final Chapter
May 12, 2015
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A Trip Down Memory Lane – Part 2

When WK was 5 years old, I sorta had the come to Jesus with myself. He was slowly progressing with his PECS communication board, he was potty trained, he was no longer receiving ABA Therapy in home and had since been “transferred” to the local District. Sounds fantastic doesn’t it? Yea, not so much. He continued to have serious gut issues, he was so picky with food it was nearly impossible to feed him, he was 5 and could together two words “want juice” “go pee pee.”

I wasn’t going to settle that this was all that he was capable of. I just knew in my heart that he was going to fuck Autism up and the only way to do that was for me to put on the cape and dig deep.

So off I went on my research to the Bio-Medical world. Diets, supplements, lotions, potions, literally throwing noodles at the wall to see what was going to stick (aka help). We have a fantastic well known Doctor in Dr. Robert Sears (Dr Bob). He has been championing the Autism disease for quite some time and he knows all sorts of fun things to do for your child that could or may not help them. We did 90% of everything he recommended:

  1. Gluten free and Dairy free diet. CHECK
  2. Cod Liver Oil. CHECK
  3. Numerous rounds of anti fungal Antibiotics to help decrease WK’s yeast level. CHECK
  4. 40 sessions of Hyperbaric Oxygen. CHECK
  5. B12 injections every 3 days. CHECK
  6. Compounded Glutathione cream to stimulate the brain. CHECK
  7. Probiotics and other supplements. CHECK

I’ve stood collecting shit samples and stuffing them in containers multiple times. I can assure you there is nothing worse than collecting your kids shit and stuffing it into tiny vials and getting shit underneath your nails, all over the counters, etc. It is far not a highlight of mine. In fact there was one time I was collecting his stool samples that I barfed in the sink so then I was cleaning barf and poo. FUCK #fail.

Sitting in a tiny oxygen chamber with WK was a crazy experience. It’s basically this tiny little rocket ship that you sit in, while WK sat on my lap. They would wheel up a cart with a DVD player and TV on it and then WK would watch TV for an hour at super high levels of oxygen pressure. The thought was that increased air pressure would decrease the inflammation in the brain and then decreased inflammation would allow more speech to prevail. This little experiment almost caused my left ear drum to burst and to this day, I still suffer from ear pain and ear issues in my left ear.

I’m not exactly sure what helped WK start talking more as I didn’t chart it one by one. I didn’t really give a shit what was going to help him, I just was desperate for ANYTHING to help him. I had my heart set on hearing the words “I love you” come out of my kids mouth one day and NOTHING was going to stop me until I heard them.

Trying to plan WK’s medication schedule out was almost impossible because certain thing had to be given hours away from the next thing. We never traveled from home (even to Albertsons) without the proper snacks, medications, applesauce so that I could mix all the supplements. When I say I never left the house without a lunchbox full of his stuff, I mean never. The constant planning, mapping, packing, and unpacking IS (as is I still do this) overwhelming and at times as brought me to tears. I feel like my brain never gets to shut off and relax because I am always wondering if I forgot something of WK’s, did I bring the medications, the applesauce, the ipad, the charger, everything WK would need in order to “function” in whatever setting we were doing.

6 years old came and we were excited about WK heading to 1st grade. He had done fairly well in his special Autism Kindergarten class that his Teacher thought he was ready for a non Autism Special Ed classroom environment. Oh I was so stoked for WK to be “moving on up” and getting away from the structured Autism program and heading to a “traditional” Special Ed classroom. How completely crazy is this? I was happy that my kid was going from one Special Ed classroom to another. Talk about having a humbling experience. While most of my Friends’ kids were getting ready to attend 1st grade and already were reading and writing, I was just excited that mine could sit in a chair for 6 minutes at a time before needing a break. Yep, 6 minutes. That was my big accomplishment…sigh.

WK lasted in this non-Autism classroom for 2 weeks. I’ll spare you all the gory details but lets just say that it wasn’t the right placement and when he came out with a bloody forehead and the Teacher was unsure why, I said it was nice to meet her but WK will never be back in her class. He was out of school for 6 ½ weeks while I looked at various public schools and finally was able to get him into something that I thought could work for him. I was skeptical but willing to give it another shot.   And then WK fell off the jungle gym, broke his shoulder and that was 1st grade in a nutshell.

We started 2nd grade in the same type of classroom setting as 1st, all Autistic kids, all ranges of severity and lots of different behaviors. It sounds great to say that your kid goes to a special class just for Autistic students until you realize your fairly non- verbal kid is one of the highest functioning in that classroom. The school would pull WK out of class 2x each day and plop him into a “mainstream” setting aka typical classroom environment during his preferred subjects (math and spelling). The problem with this is that WK spent the majority of his day with kids who were loud, didn’t raise their hand, caused self injuries, eloped from the classroom and ran away, etc. It was hardly an environment that WK could benefit from. To think that he was capable of transitioning from one type of classroom to another multiple times per day was just simply unfathomable. And then came the day I showed up without an appointment to secretly observe my WK in his “mainstream” classroom. Lets just say that after WK was crying, punching himself in head because he was frustrated and the Principal said “Mrs. WK’s Mom” sometimes you need to let him cry it out” and I responded with “Mr Principal sometimes you need to shut your mouth and listen to the Parent and this is one of those times. Either remove him from the classroom right now or I will.” Needless to say WK and I left school after my observation that day and that started the road to private school.

Years 7-8 we started to see a lot of gains in WK. He started to talk a lot more, started becoming way more social, sleeping better, eating the same diet, still doing B 12 shots in the butt every 3 days and overall just seemed to be “getting better.” I think it is partly due to age, partly due to me keeping him on the same routine for years now and also partly due to him finally being comfortable in his school environment. We started a Non Public School in 3rd grade and it has been LIFE changing for WK. He is finally learning, at grade level (5th grade now) in a few subjects, has friends, plays PE everyday, plays structured games at recess versus circling the perimeter of the recess field by himself.

Pausing here and will see you on A Trip Down Memory Lane Part 3, the final part of the “pre” story.

 

7 Comments

  1. Tracey says:

    Thank you for sharing your story and how WK got to the amazing place he is today. “Hard work” by you is such an understatement. We all hope that we would do everything and anything for our kids but you never really know until you are there. And you are there every single day. What an amazing Mom you are. Happy early Mother’s Day.

  2. Jeri says:

    Can’t wait for the next entry!

  3. Becky Dirickson says:

    I am so happy to hear about the progress he’s making!!!!! That in itself makes me happy! I understand the struggles to get to this point now and raise my glass to you my friend! Yipeeeee for progress!!!

  4. Paul Lanning says:

    You rock, Warrior Mom. Rooting for you and Warrior Kid every day!

  5. Marge says:

    Amazing accomplishment Warrior Mom. How courageous of you to follow your heart and get WK into a school
    where he is flourishing and doing so well.
    I know you will never stop pursuing the best for WK and obviously, you are succeeding in every way.
    So proud of you Warrior Mom

  6. Denise says:

    There are so many things we autism moms don’t usually talk about because we want to focus on the positives of how great our kids are . . . like the poop samples. My god, I’ve had to collect so many stool samples over the years that I can’t even count! It’s such a horrible, horrible thing to have to do! Thanks for keeping it real and being honest about all of the good and bad that comes with being a warrior mom 🙂

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