A Journey Through Apraxia {Part Two}

by Maria on September 23, 2012

photo by Tara Long Photography

I was so busy telling you the back story in my first post, I didn’t get a chance to explain what Apraxia is or how we came to realize that was what our son most likely had.

I still remember the first time our speech therapist mentioned the word Apraxia. It was during one of our sessions where I was bombarding her with the usual questions, “Do any of the other kids you see, struggle this badly?” “Why can he say a word sometimes and then he never says it again?” “Do you think it is because of the low muscle tone in his face?” I was full of questions; especially the closer he was getting to three and still not talking.

That day she threw out two words I had never heard before, Apraxia and Dysarthria. I think I was in major denial, it took me three weeks to even pronounce them correctly. She said her personal opinion was that he had a combination of both. This is how she explained them to me, and this is how I explain it now too.

 Apraxia is a disconnect in the motor-planning part of your brain. When you and I talk we don’t have to think twice about the movements are mouth is making to form the words and sounds that are coming out. For a person with Apraxia, there is a disconnect there and they have to work extra hard to form words and sounds. Dysarthria is weak or low tone muscles in your face (it can also carry through to other parts of your body.) Both of these conditions have varying degrees of severity.

In our therapists opinion Thatcher had a mild case of Dysarthria and he most likely also had Apraxia. She wouldn’t say much more then that. She pleaded with me not to look things up on the internet. It’s strange to look back on that time. In my memories I feel like everyone involved was walking on egg shells around me. No one wanted to tell me how serious it could be. On one hand I understood this reasoning on their part, he wasn’t three yet, and there was a chance (however slim it might be) that this would all resolve itself. I am sure the therapists and team members involved didn’t want to give me false concern if this were to be the case for Thatcher, but I wish they would have given me worst case scenario…knowing the worst would have pushed me to start working harder with him earlier, instead I felt coddled and like there was a chance he just needed more time.

At this point Thatcher spoke Caveman. I was really quite good at translating and interpreting it. He had grunting down to a science. The tiniest difference in his inflection meant something different. For the most part I understood him completely. My husband would be upstairs helping Thatcher with something, and I would hear the grunting and Thatcher getting increasingly more agitated because dad was not understanding. I would yell up stairs, without even seeing what was going on, and know exactly what Thatcher was trying to tell dad. “Dad, he doesn’t want to wear that shirt.” “He wants his blue blanket.” He needs help getting his toothbrush.” My husband thought I had super powers.

As we started our move Thatcher was one week away from turning three and the only words he would volunteer on his own were, “Da” “Ma” and “Ba” (which meant anything from bus to brother to boat or anything that started with a B.) With a prompt he could say a few more things. He had about 20-30 approximations. Approximations mean that instead of “blue” he would say “bue.” Even now, almost all of his words are approximations, but believe me – we will take it!

Right after we got moved in I took him to be evaluated. It is very hard to watch your child with someone they have never met. I remember the evaluator asking him what color a blue block was. Blue was one of the words he could say with a prompt. I knew if I said it once for him he would be able to say “Bue.” But that is not how it works. It hit me that I wouldn’t be there to give him prompts when he went to school either. These types of realizations were happening on a daily basis, and I felt like I was starting to live in a constant state of worry for Thatcher and his future.

The evaluation came back. In their opinion he had Apraxia. The packet I received was filled with papers, charts, graphs and percentages for everything you can imagine. One graph is burned into my memory forever. The line graph that ranked how severe the apraxia was. It was a scale of one to sixteen. I will never forget the feeling of my heart dropping to my stomach when I saw the number 16 circled. What did this mean for my sweet boy?

That night I looked up anything I could find on Childhood Apraxia. I cried and I cried and I cried some more. In a very real sense, I felt that parts of the dreams we had for our little boy were shattered. I found this site Apraxia Kids that night. The little video on that sight almost had me in convulsions I was crying so hard. It said everything I was feeling in my heart.

As we continue down this road, on a journey we never planned on taking, I realize that our dreams for Thatcher are not shattered. No. The dreams are definitely still there. Thatcher just needs us to carry them for him for a little while. And even though there are many things I can’t do for him, that is one thing that I can do, and I will, for as long as it takes.

Maria

Read {Part One} or  {Part Three}

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{ 24 comments… read them below or add one }

Destri September 23, 2012 at 11:49 am

Oh sheesh, wiping tears. The video and the last paragraph got me.

You are so strong!

Love you to pieces and I can’t wait to watch little Thatcher grow to be a voice of triumph in overcoming this. And you’re right he will.

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Maria September 23, 2012 at 4:11 pm

Thanks Destri.

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Merry September 23, 2012 at 2:55 pm

Way to make me cry. You wrote that so well, I could feel how much you love your sweet boy. I love to see parents like you and Sim who become their own experts and, when necessary, advocate strongly for their children. Anyone who has any contact with Thatcher immediately wants to be his champion. I’ve see the excitement on his cousins faces when he is able to say (approximate) their names. Keep sharing your story!

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Maria September 23, 2012 at 4:13 pm

Thanks “An-t Me-ee”

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Janna September 23, 2012 at 5:48 pm

Thank you for the beautiful post. My oldest son has autism, and I understand well the heartaches, the sweet triumphs, and the deep emotions that come from loving and nurturing a child with special needs. I smiled when I read about your translations of his “caveman talk” — it’s amazing what those grunts can communicate!
Even though it is not always easy, it has been such an incredible blessing to watch my son grow and progress, no matter how slow and steady the pace. He is a blessing to our family, and he has taught me so much.
I don’t know you personally, but I do know that you are an incredible mother!!! Thatcher is so blessed to have a family who loves him, who are working to help him reach his potential, and who are there to be his advocates and his voice. May the Lord bless you with peace and joy in all of your efforts!

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Maria September 23, 2012 at 7:35 pm

Thank you for your kind words Janna. As hard as it is at times, we recognize this experience as a great blessing to our family. It is teaching us how to pray with real intent and how to do hard things. I can tell that your son is also very lucky to have you for his mother. May you be blessed for the love and patience you give to your precious son.

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Tracy September 23, 2012 at 7:15 pm

What an amazing boy for an amazing mom. Love you guys!

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Maria September 23, 2012 at 7:36 pm

Thanks Tracy, we love you guys too.

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Honey September 23, 2012 at 10:02 pm

This was my first time to your blog. I could completely relate to how you felt when you saw “16″ circled on the form. I remember my daughter was seven when she was finally diagnosed with central auditory processing disorder. This, too, is a speach and language disorder. There were a series of 8 tests, I believe, and if you failed one, you had this disorder. Our daughter failed all but one. I went home and told my husband, “They know what she has”. He said, “I don’t care what she has. She is the same today as she was yesterday, and I love her. She is perfect just the way she is”. He still doesn’t know the name of what she has. She is now in her 20′s. Life is still hard, just in different ways. My daughter surpassed all the predictions about where she would be when she was grown. I pray that you have much success raising your little boy.

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Maria September 24, 2012 at 9:59 am

Honey,
Thank you for sharing that with me. Your husband sounds like a great guy. Your daughter is lucky to have you both. We know there will most likely always be struggles for Thatcher, but we are seeing many miracles as he to surpasses the goals we set for him. Thank you for taking the time to comment and let me know a piece of your story.

Maria

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Treasa September 24, 2012 at 1:09 am

Maria,
What a wonderful mother you are! This quote popped into my head and I wanted to share it with you.
“One hundred years from now, it will not matter what kind of house you lived in, how much money you had, nor what your clothes were like. But the world may be a little better because you made a difference in the life of a child.”
God truely knows how special you are to be able to love and nurture your cute little family through such tough situations. We may not know why but at least we know God is on our side. Love You Cous!! Sending hugs and sweet prayers for your family!
Treasa

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Maria September 24, 2012 at 10:05 am

Thanks Treasa,

You are so sweet, it is always good to keep things in perspective. Thatcher is teaching our family lots of lessons…some of which are harder then others :) we are thankful everyday for the blessing of having Thatcher in our family. Love you too cuz!

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Kelly S September 24, 2012 at 10:03 am

What a touching story – my thoughts and prayers are with you and your family. Thatcher is adorable by the way!

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Maria September 24, 2012 at 10:10 am

Thank You Kelly.

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Josh September 24, 2012 at 9:18 pm

You are a very good Mom!

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Jennie October 9, 2012 at 3:12 pm

Just wanted to say thank you for sharing your story. My middle son, who is now 7, has been struggling since birth with developmental delays – none of which we’ve been able to define/diagnose. He has overall poor muscle tone – arms, legs, back, mouth, etc – so I can definitely relate several of the things you shared above — especially realizing that I can’t follow him everywhere to translate/explain for him and advocate on his behalf. How will he be able to handle his hygiene at school? Pull his pants up? Communicate and be heard with his peers/teachers? And on, and on, and on… When he went to our local ISD for an eval, it was probably one of the most heartbreaking experiences in my life. I watched the staff testing him shake their heads and avoid my questioning gaze. Hard to take as a parent – especially one that has no clue what they’re up against. He’s been in speech, physical, and occupational therapy for a few years now and is making slow, yet continued, improvement. I think we’ve been to just about every specialist there is and undergone all sorts of test, but still haven’t nailed anything down, however, we have been blessed beyond belief with the teachers and therapists he’s worked with. They have been phenomenal.

Anyway, thank you again for sharing your story. Finding stories like yours online has been the next best thing to a support group! :) God bless – best wishes for you and your family!

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Maria October 9, 2012 at 10:21 pm

Oh Jennie,

Reading your comment made my heart ache, I know all too well those overwhelmed heart sick feelings of worry and concern for your child and their future. It sounds like you are very proactive and doing all you can to help your sweet boy. The part about his evaluation made my eyes sting trying to hold back tears. You are so strong. I can only imagine all the emotions you have been through. Thank you for taking time to share part of it with me. I am so glad to hear that you have great therapists. I’ll be your “support group” anytime. Good luck with all you are doing and keep reminding yourself how awesome you are. You are his angel. God Bless You too, Maria

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Jennifer Roberts October 18, 2012 at 1:38 am

Maria- I can feel your pain. My daughter(now 13) was born 14 weeks premature weighing 1lb 4oz. She too had low tone from her face/neck all the way to her trunk(butt). She was in physical therapy for her low tone issues. She didn’t walk until she was almost 18months.

She would “choke” on thin liquids or even foods and gag and get sick. It wasn’t reflux. It never got that far down. It became so common that we would just go into reaction mode when it happened. When we would dine out- people would look horrified that she was choking and we weren’t panicking. We just clean her up and go on eating. Not until she was almost 2 years old did we get a true reason for her feeding issues. She too has apraxia.

Her speech therapist gave us suggestions of using a NUK brush. This was great. It woke up her mouth before she ate and she could feel where the food was. Before the food would get lost in her mouth. Also to try using peanut butter or thick sauces or sticky food on the top of her lip for her to lick off. To gain more control of her tongue.

Now that she is older, she still has some issues with meats. She finds them harder to chew. She lacks the strength somewhat. She also has some processing issues- which are likely related to her premature birth. She is extremely bright and introverted like her dad. She takes her time with things and can be a little OCD when it comes to how she likes things done. She is who she is. She has learned to cope with her issues well.

My advice to you is. He will learn to cope. Be there and support him. Embrace him. Love him. It’s hard somedays. You don’t want to see them struggle. The hardest part is to let them find a way that works for them- but they will.

Best wishes for you all.

Hugs. Jennifer

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Maria October 19, 2012 at 11:58 am

Oh Wow Jennifer, You have been through so much. It sounds like your daughter is doing great. That is so encouraging. It also sounds like her mouthing and eating struggles were very severe. That would be so hard. Luckily for us that is one problem Thatcher never had with his apraxia and dysarthria, you can tell by his size :) We also use special things to “wake up his mouth” and it does seem to help, it is hard for him to get tongue placement properly for forming sounds.

Thank You so much for sharing part of your story with me. It is always so comforting to hear from parents who are further down the road and can share how things really do get better.

Best wishes to you and God Bless,

Maria

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Kristy November 30, 2012 at 11:06 pm

Maria, I understand exactly what you are going through. My daughter is now 7 years old, was diagnosed with autism, mild cerebral palsy, and severe verbal apraxia as well. It took me 3 years of repeating at least a hundred times a day to hear the word mama, but I hear it all day now, and it is awesome!! She is putting 3 words together, she cannot hold a conversation but is making huge leaps and bonds. The funny thing is she sings like a bird, so effortlessly, that’s when I really get to hear my sweet little Peyton’s true voice. She still does her cavegirl talk (grunts) daily off and on , but we make her use words or approx!! Hang in there, it will come!! Will keep Thatcher and you and your family in my prayers. Dark days will come and go, but never, never give up hope. We both know it will take alot of HARD work for our kiddos but they will get there!

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Maria December 28, 2012 at 9:28 pm

Thank you so much for coming and sharing a little of your story with me. I would love to see your little cutie and hear her sing like a bird. Thatcher also responds very well to singing. He has recently started a music therapy/lesson session every other week and he LOVES it.
Thatcher too, tries to get away with grunting whenever he can. :) Thank you for your encouragement. We can do this. Much love and prayers for you and your family.

Maria

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Shanon January 6, 2013 at 8:57 pm

Maria, I understand a little of what you’re going through. My daughter is 2 1/2 and can’t say any words yet. She’s in speech, developmental, and occupational therapy and I really hope it helps her. I wish we had a diagnosis, just so I can know what to expect for her future. She doesn’t quite fit into any of the disorders I’ve been able to look up. Good luck to you and your son :)

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Amy January 26, 2013 at 11:25 am

Maria

Thank you for sharing your story about Thatcher. My son Jacob will be 7 in March. He was diagnosed with Apraxia when he was 2 1/2 years old. He started going to school at 3 1/2. I struggled every morning when I would put him on the school bus, but I also knew that it was the best thing for him. He gets speech therapy three times a week and occupational therapy once a week through the school. My husband and I elected to have him repeat Kindergarten this year and what a difference a year can make. He went from not being able to write his name last year to writing a complete sentence this year. He has some great teachers and therapist who continue to help him make great strides in his speech. Although his vocabulary is pretty limited, it is a joy to here him talk! We take one day at a time, and relish every little accomplishment that comes our way. I will keep you and your family in my thoughts. Always remember that there is a light at the end of the tunnel.

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Cheryl January 28, 2013 at 11:40 am

I feel your pain. When my son was in elementary school, I noticed that his handwriting was terrible and he had problems in math and his speech was not quite right. I talked to his pediatrician about it and he referred me to a psychologist for testing. I have been down this road also but my son is not as severe as yours.
My son was diagnosed with 4 different learning disorders and one they didn’t even have a name for which included ADD, disgraphia, and dispraxia. Through all of this my son was reading above grade level and did not have dyslexia (thankfully). He too has a disconnect but his is mostly from his brain to pen/paper. Thankfully, my son has learned to deal with his difficulties. He graduated from high school and is attending college.
As for Thatcher, you will be have to be his advocate because if you don’t stand up for him, the school system definitely will not. You will have to be his voice and it seems like you are doing a great job at that. Your story just about made me cry. You can never quit on Thatcher because if he thinks or feels that you have, he too with quit. I hope he is improving and will keep both of you in my prayers.

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