Jake's Journey with Apraxia

And the Friends We Met Along the Way

Today my plan was to endorse how important preschool is for our kids with apraxia. After all, I’d been mentally planning it for months now. What else would I talk about when tomorrow night is orientation, Wednesday Jake meets his new teacher, and Friday is the first day of school?

I also thought I’d be giving reassurance to worried moms who have kids with food allergies, cheering, “If I can send my child to preschool, you can too!” I’ve read so many viewpoints on this subject and most will agree that you have to take a leap of faith and trust that your child will be in good hands. In fact, last year I did just that three days a week and everything went off without a hitch.

But last Tuesday something happened that made me second-guess the preschool decision that I made a few short months ago …

I got the ALCAT blood test results back. Prior to our appointment on August 29th, the nurse wanted to share what severe food intolerances Jake tested positive for. (Intolerances are divided into mild, moderate, and severe categories.)

Jake has a severe intolerance to: egg white, peanut, tuna, wheat, and pork. She also added that gluten was on the moderate list. If I add those intolerances to the true Ig-E food allergies that he has – peanut, almond, and fish  – you get one allergic kid and one stressed-out mama.

As I began digesting this news, Forrest Gump’s long-haired, heavily bearded face popped into my head when he decided to abruptly stop his three year coast-to-coast run saying simply, “I’m tired. I think I’ll go home now.” If you’ll recall, he turned around and then slowly forced his exhausted feet back to more familiar territory.

Wednesday and Thursday I continued to put one foot in front of the other, just like Forest Gump did in the movie, with the sole purpose of getting through my day. I tried to encourage myself to keep going. I tried to focus on the positive, even though I was mentally and physically depleted.

After spending a couple of days mid-week humming Jackson Browne’s song Running on Empty, Jenny Sanzo shared the song, Home that she defined as her “apraxia anthem.” This Phillip Phillips melody reminded me to keep the faith, pick myself up, and to continue moving ahead.

Friday, after speaking with two other moms who have kids with gluten intolerances and getting some feedback, my fighting spirit returned. I went to the health food store and picked up some new things to try to incorporate into Jake’s diet. I will continue this trial-and-error process until we go back to visit the doctor at the end of August and get our official attack plan.

So, what does this have to do with starting three-year-old preschool?

All of the daily snacks, cupcake birthday parties, holiday parties, and goodie bags push my stress level past the boiling point.

Yes, he is used to having a “different” cupcake, but now I have to find a new gluten-free recipe that tastes good. I hope to find one, but don’t know if I will. Yes, he is used to sometimes eating different from the other kids, but he is not used to doing it every day.  Eventually he will get used to it, but it just so happens that he will be starting a new diet and a new year of school at the same time.

I know socialization and communicating with peers and adults is important, but he does have other situations where he interacts with kids his age. He starts Kindermusik next week and also goes to Sunday School.

On Friday, my mom called and volunteered to keep Jake two mornings a week if I wanted to hold him out of preschool this year. She kept my other son three days a week when he was Jake’s age while I worked and I credit her for the reason L is such a good student. She has a gift of creatively teaching and getting kids excited about learning. I think if she works with Jake on a one-on-one basis with numbers, letters, phonics, and reading that it will be a huge asset to his progression.

I’m giving the diet/supplementation program until the beginning of 2013. If I haven’t noticed any significant improvement in Lil’ Man’s speech, I’m taking him to Nancy Kaufman. In my wildest dreams, I will have a miracle on my hands and won’t have to make the trip to Michigan. In the meantime, we’ll continue with private one-on-one speech therapy on Tuesday and Thursday mornings and I will work with him as often as I can at home.

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4 thoughts on “Running on Empty

  1. Amy R. says:

    Praying for strength and perseverance for you Tori as you travel this road! Brayden will miss Jake in preschool, but I totally understand your concerns. I would feel the same way. I hope that while he is at your mom’s each week, you will have some much needed “Tori” time! No blogging or cleaning. Just do something all for you!

  2. Kristy A says:

    Tori, we have to get together and soon! I hope Bison and I didn’t contribute to your already stressed out feelings! HUGS!!! No matter what our worries are as mommy’s of Apraxic, food intolerant and completely adorable little boys…we truly need to pray, trust and have faith in every direction we turn. I’m so proud of you and feel Jake is one of the luckiest boys around! If you do in fact, decide to not put Jake back in pre-school, it sounds like he will be in wonderful hands with your Mother and what a blessing!!! As the time gets closer for Bison to go to pre-school for the first time in September, my chest tightens and my brain literally hurts with all the ‘what if’ scenarios. And trying to think of everything under the sun that I will need to provide in addition to the normal supplies; gluten free play-doh is at the top of the list. I wish Bison had more interaction with children like Jake, but with no siblings and no play groups (just Sunday school), I really want him to get socialization. And he absolutely LOVES kids and other people; he lights up. So I’m going to give it a try. Hang in there and I will get back with you on possible dates for an outing of the dreaded shopping!! Hugs! 🙂

  3. Dru says:

    You should not rely on the ALCAT test. It doesn’t have much support in the medical community. It’s notorious for false positives and false negatives. There are many, many resources for gluten-free food now. All mainstream grocery stores have gluten free food. WalMart has GF food. There’s a ton of GF food online, especially on Amazon. Also, try King Arthur’s GF mixes, they’re the best, and can be ordered online or bought locally. There are also many egg alternatives that can either be made or purchased. This will become a way of life and easier every day. Good luck with your darling boy!

    1. tstarmom says:

      Dru- Thanks for your comments. I do realize that I should not rely 100% on the ALCAT test, however, accompanied with an elimination diet it is a very effective tool for determining what food intolerances my son has. I did many tests on Jake and do not find out all of the results until next week. We also did a celiac panel, which will give us more accurate results with the gluten intolerance. I am working with a Medical Doctor, who has additional holistic & nutritionist certifications. She is the best of both worlds – traditional medicine and holistic.

      This past week, I’ve really gotten a lot accomplished with finding some things that he can eat, but it is a trial and error process. He’s had a true Ig-E allergy to eggs since he was 9 months old, so if he does need to come off eggs, I have experience with that piece of it. I finally found the King Arthur gluten free flour, which I think is going to be a lifesaver for me and I ordered Xanthum Gum from Amazon. I’ve also found a really awesome blog that gives daily gluten/peanut free meals for kids. I know there is a lot out there, but it is a process to weed through all of it b/c not all of it tastes good or is kid friendly. Once I have the follow-up appointment next week and get on an official diet plan, I know my anxiety will subside a bit.

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