April 14, 2014

When things go off course...


M, like the majority of children on the Autism Spectrum, has a tendency to thrive with a stabile routine. Today was not that day.  Here is somewhat of a brief explanation about a typical day in the life of M.

TYPICAL DAY:
M gets up and has breakfast before I take her to school. Dropping her off in the morning is still challenging. It has taken the majority of the school year for her to allow me to drop her off without walking into the classroom to help her put her book bag and jacket away. She is now working up to kissing me goodbye at the door approximately 60% of the time. She still needs to make contact with a teacher before she will join in with the other kids and let me leave.

M requires redirection during the day and is still working on initiating conversation or play with other students. She participates in activities if she is familiar with them or if the presented activity is instantly enjoyable. With the assistance of an in-community resource teacher, M is starting to invite others to play with her instead of remaining content to play alone. Taking turns during games or other activities is a new skill that she is mastering bit by bit.

Mealtimes at both school and at home are almost always a challange. She takes longer than any other child to eat her meal. About 90% of the time she does not finish her meal because she does not like a certain texture or taste of a food.

After meal time and a nap, it is time for the parents to pick the kids up. Once home, M needs time to decompress from the stimulation overload that she gets at school. Within the first five minutes that she is home, M will have her shoes and socks removed and an apple in hand as she starts the first round of begging for a television show. About two years ago we began restricting M's viewing time. She is allowed TV time now- but in small doses. The time between her arrival home from school and dinner is normally "free time". She chooses the activities and can play alone or with her brother. As long as "Peanut" is in the mood to listen to her directions, she has started to reach out to him more as a playmate.

After dinner is normally time to catch up with Daddy. The bedtime routine at our home is pretty standard; PJs, brush teeth, go potty, read books and lights out by 8:30. (Bath nights are different- but that is a whole other blog post for another night.*note to self- blog about overcoming hypersensitivity during grooming practices)

TODAY:
I woke up late and our morning was rushed! M went along with it and drop off went great! I volunteered to hold a make-up photo shoot for the kids who missed cap and gown picture day. With this being said, M was one of the 6 kids that I worked with. taking pictures of children without an eye contact issue is a breeze! After about five minutes of trying to convince M to look at the camera, we finally got a keeper! The real win with this routine change was that there was ZERO separation anxiety when it was time for her to go back to her classroom. Moments like this are truly a win for her. (Pictures are being kept a surprise until I show them to our family first)

She had a gluten-heavy lunch today after 3 days with no gluten at all. This was such a bummer. We are still "in talks" with her school to get her own lunch brought in everyday. Hopefully it will be resolved soon. I have no idea if it was the texture of the turkey meatballs or from the sub roll in all of its gluten-laden glory, but M started crying five minutes after eating and complained that her tummy hurt. Before her teacher could even respond, M vomited all over her cot, blanket and the rug next to the cot. As soon as I got the call, I wrapped up my lunch date and went to get her from school.

As soon as I got to school she was back to normal self. She jumped up and exclaimed, "Hi Mommy! I am sick. Let's go home!" What is a mommy to do? I skipped out of that school with my "sick" kiddo! Due to school policy, M is not allowed to return to school for 24 hours after a child vomits. Feel free to check in on me and my lack of sanity at the end of the day tomorrow...

The hubby and I had planned to take M and Peanut to visit the Easter Bunny at the mall tonight. I was a bit reluctant to take her out of the house because of the puke incident at school. After 5 hours of her acting better than usual we decided to go ahead with "The Bunny Plan" and head to the mall. She was amazing! When it was M's turn, she just walked right up and sat down beside the giant bunny. For any of you that know my daughter personally or know any other child on the spectrum, you will understand how exciting this is.


We followed up the Easter Bunny visit with dinner in the food court. M and Peanut both ate everything they were given. Obviously it was not the most balanced meal due to our limited choices for GF food in the food court. Either way, we get an A for effort because we even looked up Chic-fil-a's dipping sauce before handing it over to M. She made a "happy plate" and even ate all of her grilled chicken. (Chicken is normally a battle with her due to the texture.)


After dinner, we took the kids to the Disney Store to continue the tradition of taking them in to browse after visits with Santa and the Easter Bunny. M did not throw a fit when it was time to go. On the way out of the mall she stopped in her tracks to tell us that we could not go home. We had skipped going to the indoor playground that would have normally followed the Disney Store- and she knew it! Because it was getting late, I simply explained that it was time to go because the mall was going to close. She was satisfied with my answer, took me by the hand and off we went. Typically this would have ended in tears. As you could imagine, we were thrilled!

Once we got home, bedtime went off without a hitch. I am not sure who this kid is...but I am not going to fuss about it. She is up to 80% GF now- still holding out on the school lunches. I hope that we continue to see improvement as her body gets used to the new normal which will be 100% gluten-free!







27 comments:

  1. Enjoy your writing very much. M is lucky to have such an intelligent mother who is sensitive to her needs.

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  2. Yay! They look so cute with the Easter Bunny. Peanut looks like he totally has a secret! :)

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  3. Aw, hopefully you get everything figured out with her diet soon so she has no more tummy problems. Darn that gluten!

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  4. Now that I read this, she sounds A LOT like my six year old. He just can't focus, has a lot of "meltdowns", requires more "babying" than I would expect from a boy that is almost 7 and needs lots of redirection. His father and I almost contemplated keeping him back next year because focusing was such a struggle for him. We are sending him because he's very emotional and I think keeping him back would devastate him, but he needs lots of extra help.

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  5. I have a hard time digesting gluten. I eat 80% vegetables, some protein and as little carbs as I can get away with.
    I have a hard time also finding foods out that I can eat.

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  6. Gluten can be such an issue for lots of people causing such tummy issues. I hope you get it all worked out!

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  7. Thai is so great to see the effects of getting as much gluten out of her diet as you can. Plus, as the dad of an 11 year old, they do start to mature when you least expect it!

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  8. It sounds like your life has been made so much better after taking the gluten out. Good for you for knowing there was a problem and doing something about it! We are lactose intolerant and there's no schools here with lactose free milk. Ugh.

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  9. Thanks for a glance into a day of your life being gluten free. It does take some careful though but you prove it can be done

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  10. I know it must be tough having a daughter with the Autism spectrum. My brother has autism (26 now) and back in the early 90s it was not a profound as it is today. Lack of educational training lack of knowledge on the disorder...my mother just had to do the best she could with him and he is fine today. Thanks for sharing your story I know some days will be better than others just stay motivated!

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  11. I have heard that a gluten free life has so many positive effects. It is really great that you have figured out ways to help her.

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  12. Aww, it's so nice to hear about kids thriving! Especially during a day where your routine is different. It's too bad that the school doesn't allow her to bring in her own lunches, I wonder why - it must be due to allergy concerns? Which is totally legit, however the implementation is obviously not working if they can't actually accommodate what the families need.

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    1. We won the battle! The reason is- if it is a government funded program (GA PRE-K) they are required to provide a balanced meal. Once we got the note from her doctor- they were very cooperative.

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  13. They are so cute with the Easter bunny. I know when my son had a peanut allergy (he's since been healed) it was a nightmare maintaining strict peanut avoidance. Three trips to ER with epinephrine and steroids were NOT my idea of fun at all, and I wasn't the one having the head to toe hives!

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  14. Good luck going gluten free. I've recently had a few gf items and was surprised that you couldn't really tell they were missing gluten. That's a huge plus because from what I hear, it hasn't always been that way.

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  15. So how is she doing now. a few months into the GF lifestyle? We have been cutting out a LOT of gluten and all of us are feeling better

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    1. The transformation has been slow but noticeable. I will be posting a 2 month update post this week!

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  16. We are currently considering removing gluten from my son's diet. He struggles with ADHD and separation anxiety. Thanks for sharing your wins along with the struggles!

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  17. I have been toying with the idea of atleast trying gluten free. I have 2 with sensory processing disorder.

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  18. Aah when your morning is off to a bad start it is hard to bounce out of it. Gluten Free lifestyle can be like night and day it seems with a lot of disorders for folks. My husband and I have been experimenting with eating Gluten Free but not consistent enough.

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  19. Having followed your blog and seeing this older post, it is amazing to see how the removal of gluten has impacted your daughter already. I am glad this journey is working for you and your family.

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  20. I know about GF. I'm GF right now just for the "health" of it. I know it's serious to a lot of people. Good luck and carry on!!

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  21. I've been considering going more GF. Not completely, but changing some things so that we are consuming less of it. I'm lucky in the sense that none of my children have a gluten allergy, but I've been seeing where it has helped with things like ADD and ADHD.

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  22. I am just starting to learn more about a gluten-free lifestyle. I hope that everything works out for you!

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  23. It must be really tough to have special dietary needs when you are a young student. Especially gluten free which is more involved in what you can and can't eat. Sounds like you have a good start and with time you will get this all figured out. Hopefully, the school will step up to the plate.

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  24. So many kids are affected by what they eat. It's good that your finding ways to help her feel better.

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