Jake's Journey with Apraxia

And the Friends We Met Along the Way

Last Tuesday in speech therapy I pulled my chair up to Ms. Kelly’s desk and feverishly finished up taking notes from the I Love Letters book. “Too bad you don’t get paid for all this work you do,” Ms. Kelly said with an encouraging smile. Yep, I agree.

Actually, according to an article this year in the Washington Post, if a homemaker got paid, their yearly salary would be $96,000. These figures always crack me up because how can you ever put a dollar figure on what both working and non-working mothers do? And, here’s another thing to consider: If the average at-home mom is worth $96K, how much does that make us special needs moms worth? Too bad we don’t get paid for all of the overtime we put in as speech therapists, educators, researchers, and dietitians. Those extra dollars sure would come in handy for some speech therapy sessions.

I have recently gotten an attack plan together for Jake’s speech and educational home activities, which should keep us going for the next month or two. Once preschool starts at the end of August, I will assess our new schedule and revamp the activities/work load.

My goals are as follows:

  • Go through Zoo Phonics flash cards and review as many letters that Jake will participate in.
  • One counting/number page out of Summer Bridge Activities workbook.
  • Letter activity – focusing on one letter per week.
  •  Speech activity on days that Jake does not have therapy.

I am going to do these things as many days as my schedule allows.

Even after doing all of this, it may sound a little neurotic, but still in the back of my mind I wonder if I’m doing enough. Have I set my goals too high? Too low? Will I be able to follow through? Should I be going to out-of-state apraxia camps for intensive therapy sessions with the best experts?

After all, there are three events catering to children with apraxia in the month of July:

  •  Kaufman Children’s Center – Intensive therapy sessions & camp
  • The George Washington University’s Summer Apraxia Camp in D.C.
  • CASANA’s 2012 National Conference on Childhood Apraxia of Speech

I know of three people going to each of these events and again, I wonder … am I traveling down the right path?

It may sound like wishful thinking, but I cannot wait until my appointment with the integrative MD on August 1st. I have a strong gut feeling that Lil’ Man has nutritional deficiencies or something that is causing his system to not function correctly. I had a perfect pregnancy, easy delivery, and Jake didn’t go to the doctor once during his first year of life. He has excellent motor skills and no other problems besides the apraxia, food allergies, and eczema.

For the time being, I know that I have to silence that voice of doubt. I have to make the most of the resources that I currently have available and not second-guess the decisions I have made and continue to make. I am going to keep praying every day for God to guide me on this journey. I will have faith that the path He lays out for me is the one that Jake and I are meant to take.

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8 thoughts on “My Apraxia Attack Plan

  1. xmomof2 says:

    Dang momma I sure wish I was as organized as you are. I also would like I know what work outside the home moms would get paid 😀 especially those of us with extra special kiddos. I just wanted to offer a thought on how you wonder if you are doing enough – you can only do so much in life. You have other children to consider alongside Jake and you have to be there for them as well. It’s a fine balance and if you feel Jake is continuing to make progress you are probably doing just what he needs. Would those extra intensives be helpful? Sure but would they put
    More stress on you and the family to get even more accomplished? I often think about trying to save some extra
    Money to go to one of these events but it’s just not financially feasible for us at this time. Hope you get all your planned activities accomplished this week :).

  2. tstarmom says:

    Thank you so much for your words of encouragement and insight. It’s always good to hear another perspective, especially when it makes sense! 🙂 There’s about 3 days a year when I feel really organized and today is one of those days. I crave order, but seldom get it in a house with 3 sons & a hubby! 🙂

  3. Jenn says:

    You are doing a great job! I often read your blog and think: wow am I doing enough? Look at all the awesome stuff Tori is doing with Jake… with a 6 month old baby and my apraxic 3 year old most days I feel like I’m just keeping my head above water. You are a great mom and I’m in awe of all you do… 🙂 Keep up the good work mama!

    PS- Will def guest blog about SPEAK for you – I’ll get it to you by the first week of August… 2000 words or so? (After one day I already “get” why people rave about it)

  4. tstarmom says:

    Hi Jenny! Thanks for cheering me on. I can’t imagine doing having an apraxic child, a baby, and still looking as fab as you do! I guess we all have our super powers or we’re just really good with “smoke and mirrors.” 😉 So glad you’re getting to take your little one to SPEAK. Seriously, can’t wait to read all about it. You write it and I’d be honored to post it!!

  5. Tara S says:

    Thank you so much for your blog. My son Jackson is almost 3 1/2 and was diagnosed with childhood apraxia in March. We knew he had some issues but thought he was a late bloomer. Finally after sometime at daycare and not a huge improvement with speech we had him re-evaluated. We had both the school district and a private come in to test him. It was the private therapist that gave us the diagnosis and gave us a plan of attack 🙂 There has been some improvement but there is always the thought of what I could do more as a mother. I feel so guilty that I didn’t catch it sooner and work more with him. He is such a social little boy that my heart breaks when he can’t communicate with his peers or the looks he gets at the local park. Of couse, Jackson doesn’t let it phase him and he has the best outlook on everything.
    Your Apraxia Attack Plan is great and I’ll be using some of your ideas. Thanks again for putting all of this out there!

    1. tstarmom says:

      Thanks so much for sharing your story. Sounds like our little ones are the same age. So glad to connect with you. We can all learn from each other because each mom’s journey with this puzzling disorder is different. Take care!

  6. Melody says:

    Jake is a very lucky ‘Lil man to have you for a mom.

    I also believe there is a nutritional cause to this. I have started my little man on NutriiVeda and have seen some amazing changes in just a week. Increased vocalizations, and wants to mimic now. He was very reisitant to this. We just had his 3 year well check yesterday and I showed his peditrician the NV info. He didn’t know if it would help, he said it couldn’t hurt. He has an appt. with a Neuroligist also and I will run it by him. My feeling is that it is essentially a multi-vitamin but he can absorb it better as it sourced from whole foods.
    Just thought I would share with you.

  7. Melody says:

    If above post is about the SPEAK product by nourishlife please see side effects of seizures due to Vit E toxcicty. Read parental testomonials on Cherab.org site.

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