A Journey Through Apraxia

by Maria on September 8, 2012

For several weeks now, I have been debating how to write this post, or if I should even write it at all.  I thought maybe I could just slide right back into posting recipes and not mention the reason for my absence.  Then I decided it’s important that we tell our stories. Though they may not be relevant to the masses, if it comforts the heart of just one mamma, than it was worth sharing.  So here goes.

In June of 2011, I took a break from my weekly post here on The Mother Huddle. I was pregnant with our third child and preparing to move to a new state. I just needed a little time to get settled and to stop feeling nauseous all the time. I thought I would be back to blogging in a matter of weeks, a month or two tops, but as some of you may have noticed….I was wrong.

It wasn’t that our move turned into a nightmare, or even that I had a horrible pregnancy (it wasn’t the most comfortable experience I’ve ever had, but I can’t use it as my excuse for falling of the blog planet for so long). It wasn’t even stress from having a newborn (she’s sort of an easy baby.) The biggest reason why I have been missing in action for over 14 months comes in the form of a 65 lb little boy who just celebrated his fourth birthday…..my son Thatcher.

My husband and I lovingly refer to Thatcher as our “high maintenance” child. He is the sweetest, most affectionate little boy, but he has had many, many, small health issues that have kept him in and out of the Dr.’s office for most of his life.

Thatcher was born with a Hydrocele Hernia, almost caught pneumonia at 4 months and has needed a nebulizer multiple times a year ever since. He had 8 ear infections before age one and got his first set of tubes shortly after his first birthday. He swallowed a small battery the day before he was scheduled to have his hernia repaired and got to stay in the hospital overnight for that one. Throw in a second set of tubes, getting his adenoids out, getting his tonsils out, an MRI and EEG, mix that together with regular illness, like strep throat and croop on a pretty regular basis, and you can see that “high maintenance” is a pretty good description of my little Thatcher.

Our family jokes that Thatcher feels like something is wrong if he hasn’t been to at least one specialist every month. Pediatric Eye Doctor, Ear Nose and Throat, Pediatric Urologist, Neurologist, Developmental Pediatrician, the list goes on. And then there are his therapists. With all of the ear infections he had, the doctor compared his ability to hear as a baby, to what it would be like to hear under water, so when most children are hearing sounds and preparing to speak, he was hearing , glub, glub, glub.

Okay, so he’ll be a little behind with talking we thought. No problem, we can do this. We got him into occupational and speech therapy and started waiting for the language to come. Time just kept passing. Surely his breakthrough will come soon…he is almost three. …at three he’s going to start talking. Well, at three he didn’t start talking.

Little did we know that Thatcher would not start talking without extensive speech therapy and A LOT of hard work. Thatcher has severe Childhood Apraxia. Something we knew nothing about 14 months ago.

I have missed contributing to The Mother Huddle, but needed time to figure out what my son needed from me as his mother.  I needed to learn how to be his advocate and put his needs at the forefront until we could figure out what was really going to work for him.

We are in a great place with Thatcher right now. He is doing so well and working so hard. It has not been easy, but the type of therapy we are doing with him now, is making a big difference. When we look at where he is now, compared to where he was last June, we are filled with HOPE!

I’m excited to be back in the kitchen and can’t wait to share more delicious recipes with you. I also look forward to sharing more of my families journey through apraxia. I know many of you are in the middle of your own journeys, and even though our paths may not be identical, I know we can find common ground in our heartbreaks and our triumphs. I know we can find strength and hope in each others stories.

If anyone has questions about our experience with Apraxia, or you just want to share your story, I’d love to hear it.

Maria

Read {Part Two} or {Part Three}

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{ 32 comments… read them below or add one }

Destri September 8, 2012 at 10:22 am

You know whenever I think of little Thatcher I think of how Aubrey’s husband said “he just has the sweetest spirit – there’s something about him that’s so special”. He is meant for great things I am certain, and all that he has gone through will give him the strength for it.
You are such a good mamma, and an inspiration! Thank you so much for sharing your story Maria.
I can’t wait to have you back, I miss your funny stories and words. And I can’t wait to hear more about your journey.
luvs and hugs
Destri

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Maria September 8, 2012 at 12:41 pm

Ah, Thanks Destri, He really is a special boy! We can’t imagine life without him. There are times when I am overcome with a feeling that there is something very special for that boy to do with his life, and then sometimes I realize in alot of ways he is already doing it. Even at this young age he is teaching are family and those around us about Love, and about working hard to overcome trials.

I am so excited to be back too! Love Ya!
Maria

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Heather September 8, 2012 at 10:44 am

Wow. Your family has been through so much. I am so glad to hear you finally have answers that will help your son! I suffer from Aphasia caused by a traumatic brain injury. I am recovered from the verbal aphasia now (I can understand spoken word clearly) but I certainly remember how awful that felt. I am still struggling with reading. Congratulations, Thatcher! Keep working hard. I am proud of you!

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Maria September 8, 2012 at 12:35 pm

Wow, Heather it sounds like you have overcome so much yourself. How long ago was your brain injury? I never knew until going through this with my son, what it would really mean to have to learn to talk and read again. I have so much Respect and Love for people who persevere and overcome such difficult circumstances. Keep up the Hard work. I am sure you are an inspiration to all those around you!

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Heather September 8, 2012 at 6:26 pm

I am a Mother of four. My traumatic brain injury occurred when my youngest had just turned two. (The picture is from before.) It was 11/29/09. I truly believe it has made me a better Mother because I do know how hard it is to learn things now and how frustrating it feels when you just can’t do it. The hardest part is the lost time, as I’m sure you know. From my experience hearing the people you love but not understanding them is not as upsetting as it sounds because atleast in my case I did not know what I was missing until my ability to understand spoken language started coming back. I imagine it is the same for your son. With love and patience he will do fine. My heart goes out to you.

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Maria September 8, 2012 at 6:45 pm

Wow, I am in awe of what you have been through. I can’t even imagine. I feel like this experience is also helping me in many ways I would never have “asked for.” It has given me much more empathy for people I see with disabilities., Now every time I hear an adult with a speech impediment I wonder if they have apraxia and how hard they had to work to speak as well as they do, I think about all the parents dealing with issues so much greater then mine and my heart feels like it will break. It has made me look at my world in a completely different way. You never know what people have gone through or what they are dealing with that you may not know about. Thanks for sharing part of your story.

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tiffany September 8, 2012 at 1:51 pm

What a great post Maria! It all makes sense and since I didn’t know that you were posting on such a fantastically fabulous blog, I didn’t know you were slacking! ha ha. We love love love Thatcher (Fatcher as oliver says) . He is a great boy and I love watching his face light up about everything! He is just so happy! We need to catch up soon. I want to hear about preschool and therapy and how everything is going. LEt’s make it happen asap. I am excited to read your posts :) this is the cutest blog! how did you get started on here anyway?

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Maria September 8, 2012 at 2:40 pm

Tiffany! Thanks, I am really excited to be back in Blog World. This blog was my friend Destri’s brain child. We knew each other back in Texarkana. This blog was a way for us and a couple other friends to stay in touch and share fun ideas at the same time. It has grown from there. We do need to catch up. I am so bummed I missed out on lunch yesterday, that’ll teach me to check my messages more often. So glad you like the blog.

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Amy Pierce Sharp September 8, 2012 at 6:02 pm

So grateful you were willing to share your personal journey with all of us. I’m glad that Thatcher is beginning to improve and he is so lucky to have such wonderful, proactive parents to help him in this journey. I hope with all the help he is receiving that he will continue to progress. Jackie is so lucky to have such a great friend that she can talk to who understands some of the emotions and triumphs of having a child with a disability. Please keep us updated on how you are doing.

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Maria September 8, 2012 at 6:39 pm

Thanks Amy, You are so sweet. Jackie has always been an inspiration to me! She is an awesome mom and I look up to her in so many ways. All of her boys but especially that sweet baby are so lucky to have her for their Mother. It is so fun to hear from you. I hope you are well. Thanks for your kind words.

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Ashley September 8, 2012 at 7:06 pm

Maria,
I think you know that I feel your pain. I seriously smiled when I read that Thatcher is making improvements. Go Thatcher! Chase is making a lot of improvement, too. I can almost understand everything he is saying. Of course, he is saying it in his own little way, so an average person wouldn’t understand a lot of it. When we first started speech, I’d look at things on a weekly, sometimes daily basis. Depressing! Since then, looking at things on a 6 or 12 month basis, has made me see how much progress he has made.

I feel bad that we don’t live closer. I know that you are the perfect mother for Thatcher, because I know you. You are amazing. Simply that.

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Maria September 8, 2012 at 8:15 pm

Oh Ashley, You are so sweet. I have been thinking about you all day.I wish we lived closer too! Chase is such a cute boy I wish I knew him and that Thatcher and he could be friends. I just got off the phone with a mom in Utah who e-mailed me after reading the post today, she had alot of questions. I told her I have a good friend in Utah who has a son with Apraxia. Her little girl is only 2 1/2 and I told her how great it is that she is recognizing the signs so early.

I am so happy that Chase has been improving so much. We still have a long road ahead but it does help so much to look at progress over 6-12 months instead of weekly or monthly. I find that the hardest times, when it feels like we have hit a wall and it is never going to get better, are usually followed by a big “Explosion,” as I like to call them, where he finally is able to say a sound or a word without a prompt that he has been working on for a long time. The road is long and full of hills but at least we keep moving. Kinda like Cross Country behind the rodeo arena. :) You are Awesome Ashley, Keep up the Good work, Chase is lucky to have you for his Mommy. I’ll probably be coming to Utah next March or April when my parents get back from their mission. I will definately let you know so we can work out a time to get together.

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carolyn September 9, 2012 at 1:10 pm

Maria, I follow this blog for the awesome craft ideas that are posted. In fact I used the darling cupcake printout activity on Friday with my students. I am a Speech/Language Pathologist and the group of kindergarten students who loved building cupcakes included 2 little girls who have verbal apraxia and a little boy who had a stroke at 3 months. When I saw the title of your post I was sure I was clicking on a Speech Path blog not one of my craft blogs. There are wonderful resources available for Apraxia now I am sure you are aware of apraxia-kids.org the workshops they put on for parents and professionals are wonderful. Be his advocate and your SLPs will love you because you will work with him instead of leaving intervention to the 2-3x a week he sees his SLP.
Carolyn

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Maria September 9, 2012 at 3:18 pm

Carolyn,
Thank you for taking the time to comment on my post. I LOVE speech/language pathologists. :) I have been fortunate to work with some wonderful therapist. Right now I am so grateful for his therapist Cheryl. Thatcher is the most severe case she has ever worked with so she takes time to attend seminars to learn the most up to date stratagies for working with him. I do my best to mimick the things she does with him on days that he does not have therapy. I no he would not be making as much progress if I were counting on the therapist as his only intervention. My husband and I actually attended on of the Parents Workshops a couple months ago. It was so good to hear about a boy who is now 21 that was very simialar to Thatcher in severity, and how far he as come and how well he is doing. He is in college. It was also wonderful to be in a room with 40 other people who I know understand what we are going through. Thank you for working with children and helping them find their voices.

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Melissa September 9, 2012 at 2:25 pm

Best of luck and patience when dealing with everything your story touched my heart and I’m sure will touch many others. My own son has had many little medical problems as well and we take it one day and one problem at a time.

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Maria September 9, 2012 at 3:21 pm

I am sorry to hear your son has had many little medical problems as well. It can be so exausting and overwhelming. You are so smart to always try to look at it on a day to day basis. Thank you for your sweet comment. I wish you the best of luck and Patiece as well.

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Chris September 9, 2012 at 10:43 pm

There is a sweet mama named Annette who blogs over at This Simple Home. She shared her daughter’s story with apraxia here:
http://www.thissimplehome.com/2012/08/my-daughters-story-overcoming-verbal.html

There are so many wonderful therapies and speech language pathologists. Best wishes for continued progress and happiness.

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Maria September 9, 2012 at 10:59 pm

Thank you so much for that link. I just went and read her post. It is so encouraging. It sounds like her daughter is doing great, and thank you for your best wishes. I really appreciate your kindness.

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Jamie Spalding September 10, 2012 at 12:26 am

How I love sweet Thatcher. He is SO CUTE!!! He really does bring happiness to everyone around him.

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Maria September 10, 2012 at 10:49 am

Thanks Jamie, He does have a special way of wrapping people around his finger without even trying. :)

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Suzanne September 10, 2012 at 1:49 am

Maria,
I’m so glad you shared you story, that’s what the Mother Huddle is all about the real mothering and struggles along with the triumphs too. Your little Thatcher has 2 wonderful parents that will do all the best things for him. Love you girl and I’m so glad you are back because I’m no where near as funny and your recipes rock!!

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Maria September 10, 2012 at 10:51 am

Thanks Suanne, there is definately some real life motherhood going on over here. :) You are so sweet and I appreciate your sincere comment. I am so excited to be back, it’s nice to be coming out of my “worry coma.”

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Annette {This Simple Mom} September 10, 2012 at 7:43 am

From my experience, dealing with just the Apraxia is so time consuming and difficult…you are a strong woman, and he is a special and dear boy!

I think it is so good for us to share our stories of difficulty…because others need our stories to know they are not alone.

After you found my story, you had asked if I am in MD. No…but very close to Harford and Cecil Counties. We live over the line in PA. Please consider emailing me!

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Maria September 10, 2012 at 10:55 am

I am definitely going to e-mail you. We actually live very close to you it sounds like. I would love to hear more about what you did therapy wise. Your Daughter is very lucky to have prayerful parents who do all they can for their children. Thanks for being an inspiration for me.

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Jackie September 10, 2012 at 11:54 am

Your kids are so blessed to have you as their mom! You have been through so much over the past 6 years and I can see that it’s only made you an even stronger/more amazing person than you already were. If you ever need a listening ear you know where to find me. I sure do love you guys!
p.s. I’m in a recipe rut, so I can’t wait to see what you have for me. :)

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Maria September 10, 2012 at 2:43 pm

Jackie, You know I feel exactly the same way about you. I think of you all the time and wish we were neighbors so we could talk over the fence all day. :) I pray for you all the time and hope you feel strength in the moments you need it most. You are someone I look at as the kind of mother I want to be.

Remember the days when we could stay up late playing games ’cause we didn’t have kids yet? Every time I make popcorn on the stove I get a nastalgic feeling of happiness. :) We have such a food connection it cracks me up. I am actually going to share that recipe a little later this month….Everyone should have stove popped popcorn at their game nights. he he

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Jileen September 10, 2012 at 1:27 pm

Maria! I have missed you! I often think about you and when you were here and pregnant with Thatcher. Such a sweet baby! Thank you for having the strength and courage to share his and your story. You have always been and continue to be such an amazing mother! And I use one of your recipes at least once every couple of weeks. I was going to make your delish pumpkin squares this very week! :) Can’t wait to try more of your recipes and certainly read more about Thatcher’s updates. Love you! :)

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Maria September 10, 2012 at 2:47 pm

Jileen!!! I was just thinking about you the other day and your cute family. I bet your boys are all so grown-up now! There is a little boy at our Church here in Maryland that reminds me of Lawson when he was a baby! Such a cute baby and now he must be in Kindergarten…ahhhhh. How does that Happen?

You are so sweet. I made those addictive pumpkin squares on Friday and have almost eaten the whole pan by myself. oops. So nice to see your voice. :) Love you too!

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Tina September 10, 2012 at 8:57 pm

Maria,
First of all…your son is beautiful. And second? Thank you for sharing. I think it helps other mommas who are scared and on the same journey. My wish for you is that hope continues to grow for Thatcher and that you have all the support for him you could ask for. I have had a couple of kiddos with Apraxia as a play therapist and have really enjoyed working in collaboration with the Speech Therapist to help them. You sound like the kind of momma that can move mountains.
Excited to see what you have cookin in the kitchen…
Best,
Tina

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Maria September 11, 2012 at 10:30 am

ahhh Tina, How are you. You are so sweet. I wish were my neighbor and could give me some pointers. I am sure you are a great therapist. Thank you for your kind and sweet words. You are the best!

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Kim September 11, 2012 at 6:28 pm

Hi Maria, My 4th son (adopted with many disabilities) has severe apraxia of speech so I have a knowledge of Apraxia. Now my 2 1/2 yr old granddaughter who has just been diagnosed with apraxia. She is a brilliant little girl who has made up her own signs and “language”. I had asked her parents about having a speech therapist evaluate her when she was 2 and mentioned to them that I thought she might be having a hard time speaking and possibly (from the symptoms) have apraxia. After the therapist worked with her for a couple of weeks Emmi was diagnosed. It’s so hard for these little ones (and their parents/caretakers) to deal with the frustration.
I wish you good luck and hope you have continued success helping Thatcher deal with his bump in the road and thanks for sharing with us.

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Maria September 11, 2012 at 8:55 pm

Wow, It sounds like you know all about how frustrating Apraxia can be. It is so hard to see the struggle in their eyes when they are trying so hard to get out the word they know in their head but can’t say out loud. Your grand daughter and her parents are fortunate you noticed the signs and pushed them to have her evaluated. They earlier the better. Thanks for the well wishes. We take it!

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