Through the years of parenting two boys with childhood apraxia of speech, I have learned a lot. I am sharing some of these truths apraxia will also teach you and hopefully encourage you on your special needs journey.
Apraxia of Speech
Apraxia is just part of our normal now. It’s how we do this beautiful mess of a life together. There are changes that happen when you first get the diagnosis.
There can be other diagnoses that get lumped on your head before, at the same time, or after Apraxia. You learn as you begin to navigate the waters of parenting a child with special needs that there is power in the word yet.
And you learn truths about yourself, your child, and the world around you.
Truth 1
God gives us more than we can handle. He gives us more than we can take. He will pour so much on us that we break. All in love and grace so that we turn to Him. Our weaknesses are where He shines brightest.
When we admit “I can’t”, He says “I can” and then He does. Be OK with being broken. At the feet of Jesus is a great place to spend time being filled with His strength to continue on this journey.
Truth 2
Not everyone will understand. Apraxia of speech, also known as dyspraxia, isn’t a visible challenge. Your child with special needs appears just like other children on the surface. You will want to punch someone in the face at some point for saying “they’ll grow out of it.” Please don’t. See Truth 1 above if you want to know how.
People will say callous things, hurtful things, will brag to you about their child’s speech before they think that it might sting, and you will have to try to explain what a neuro-motor planning disorder is more times that you ever thought humanly possible. Be gracious. Remember that most of these people just don’t understand dyspraxia symptoms. The ones that do and are just mean, pray for them. They will never know how amazing your child really is.
Truth 3
Your child really is amazing! Communicating differently than the people around them is a feat of amazing proportions. Learning ASL or PECS or Prologue is a huge accomplishment our children with apraxia of speech conquer.
The perseverance to go through session after session of special needs therapy is something a lot of adults don’t have the drive to do, but we have these incredible kiddos who just keep going and going and making baby steps (occasional leaps) toward their goals. Remember that on the days when it feel more like 3 steps back than a millimeter forward.
Truth 4
Childhood apraxia of speech treatment – therapy, special needs education and working with your little one is a full-time gig. It. Wears. You. Out. Especially if it comes with meltdowns, frustration over lost words, or SPD/ADHD/RLD or any other not-so-great abbreviation diagnoses with apraxia of speech in children.
Remember to take time to spend with God, time for yourself, and together time with your spouse. Your spiritual tank needs constant refilling, and for me, I am a more patient and better parent when I don’t neglect this. A strong marriage will help keep you floating and not feeling so alone on the island of special needs parenting. A few hours all by yourself? That’s like a tropical getaway for this weary mom. Refresh and refill so you can keep going!
Truth 5
We each have a different story. We have unique circumstances. We have beautiful children. We have the amazing gift of perspective.
That mom you heard in the grocery store telling her friend how the toddler in her cart chattered incessantly and she just wished for some quiet? She will NEVER know the utter heart-twisting-explosion of hearing her 4-year-old say “I love you, too, mommy” clearly for the first time. The absolute joy of finally hearing a phonetic “f” that brings tears to your eyes and an ear-to-ear grin to your face is a joy that non-Apraxia parents miss. When your sweet one comes up and grabs your hand to get your attention instead of shouting across the house, that’s an extra precious moment of trust and love you might otherwise not have had.
This path of parenting special needs, while hard and frustrating, has a beauty uniquely its own. Learn to love the challenges that come from apraxia, because some of them are most certainly blessings in disguise.
Looking for more information on Apraxia?
What I Mean When I Say I’m Fine: Special Needs Parenting
Using a phonics curriculum to assist in speech development
Toys for speech therapy at home
What part of having a child with childhood apraxia of speech has been the most rewarding for you?
My son was diagnosed with apraxia of speech when he was 3. We had been told by the pediatrician that he wasn’t talking because his big sister was doing the talking for him (wrong!) and that it was something he’d grow out of. Thankfully, another mom recognized the problem and told us where to go to have him tested. Once diagnosed, we took him to speech therapy three times a week until he was school-age, at which point the speech therapist came to his school to work with him. This continued until he was deemed no longer in need of the therapy in 3rd grade. Hallelujah! He is now a senior in high school who gets good grades, is tops in his class in debate this semester, and only has the occasional word that trips him up (acetominophen, anyone?), but now he laughs at himself and chooses a different word if there’s one that gives him trouble. I say this to encourage all of you who are dealing with this now. It gets better! And all of your time invested in the therapy sessions and IEP meetings and such will be totally worth it. Hang in there!
I just found your blog and had the “official” diagnosis a few weeks ago at 4 years old for Apraxia. I had suspected for over a year, so the diagnosis was somewhat of a relief because it means I am doing all that I can (speech therapy, IEP preschool program with typical peers, speech therapy at home, every early intervention program possible, etc). This post really hits home! Honestly, seeing the words “God sometimes gives us more than we can handle” was like someone read my mind! It’s like we have a child with an invisible disability that may or may not disappear somewhat. We don’t truly fit in with the Special Needs parents because our special need *may* be something our child can recover from but we definitely don’t fit in with the typical parents because they don’t have a clue how difficult our lives are! If I had a dollar for every time I have to remind myself that our situation could be worse, I would be a millionaire by now! It’s like you gave me permission for saying this is really really hard. Thank you for a wonderful post!
Hi Megan! I’m so glad you found us 🙂 Apraxia is hard. But with time, lots of work, and lots of grace you will progress. Celebrate every single step forward! I hope you have a blessed and wonderful weekend.
To me I found that Profound developmental apraxia was one of the hardest things I’ve ever had to deal with. My son was diagnosed with it when he was 18 months old. I did not understand exactly how it was caused until many years later. Between the speech therapy and occupational therapy that went on through a daily basis. Dr. bills, going to special schools and special programs for special needs, the individual education programs that he needed all the time was extremely exhausting for our family. In the beginning I felt myself as a parent I kept denying that my son had such a profound disability. But as time went on I realized I had to do something and I had to do it quick. My husband and I at the time we’re faced with a brick wall that we didn’t know how to break. Many days I would just cry. Many days I had severe depression from it. my son my daughter and my husband. I knew that the therapy was important for my son but I didn’t know how to help him because I never knew anything about the developmental processes. As years past my son finally was able to talk at age 10. He was in special needs at school all the way from Elementary school through high school. My son also suffered from sensory integration. He had an extremely hard time with dealing with the world around him. He would throw fits in grocery stores because he could not communicate, and he could not handle the sounds or the smells or the touch. After high school my son went to college for a couple years. However college was not really for him because he could never comprehend Reading. Therefore it was better with visual training versus reading a book. He got a job at a auto repair company. I am happy to say that at the age of 31 my son is a manager of a national tire and battery company. My ex-husband and I worked extremely hard to get him to where he’s at today. But none of that would’ve been possible if that special boy did not get the self-esteem that he needed from us and his teachers to get him where he is today. His father and I are no longer married we’ve been divorced now for 20 years. I truly believe that I myself went through severe depression when he was diagnosed. My depression probably cost my marriage. But his father and I could not be more proud than we are today 31 years later to have a son that has overcome this disorder about 90%. I thank the doctors teachers and the therapists for their due diligence with our son. There is a light at the end of the tunnel for people whose children are diagnosed with profound developmental apraxia today. My son Scott is proof of it.
Years later doctors told me that they truly believed what caused my sons profound developmental apraxia was the severe allergy to milk. To this day my son cannot have any dairy products.
You definitely hit the nail on the head! My daughter is now 7 and we are still on this Apraxia road, with speech therapy since she was 18 months. Thanks for totally putting it in perspective.
Thanks for posting this! My son is currently going through this as a result of his epilepsy. He just turned three. He currently receives 4 hours of speech intervention per week on average. He’s had 81 sessions since October 2016 alone. IT IS EXHAUSTING! So I identify with Truth #4 the most.
I wanted to connect with other parents who have Special Needs kids and feel alone at times too. In fact, I just started my own blog a few days ago to address similar issues. Yours is one I can connect to. Thank you!
Thank you for this post and understanding. Brought tears to my eyes. We are in the middle of this and this was so encouraging!
I haven’t had opportunity to tell this story much. Our youngest was diagnosed with developmental apraxia before the age of two. His words were never consistent and he had difficulty forming certain sounds. He also had tremendous difficulty with understanding what we were telling him and every instruction had to be given in a specific way in order for him to be able to process it without frustration. I knew sign language, so we were able to teach him a few things, but his motor skills were off a bit, too. Again, his diagnosis was developmental. He underwent speech and occupational therapy from 18 months until four years of age. At the age of four, literally – one day….he woke up and began to speak. It was miraculous and heartwarming all at the same time. Today, at the age of ten (almost eleven), his words are extremely articulate, he is brilliant and his ability to communicate is astounding. It took patience and dedication and a lot of prayer. I share this just to encourage at least some of you who may have littles experiencing this. We were fortunate and I pray that each of you have the same experience at some point in life. Hearing the words, “I love you,” or simply being able to have a comprehensive conversation with your children…means a lot to a mom’s heart. I know….
I don’t deal with apraxia. My son has CAPD, ADD, processing issues, and Dyslexia. So much of what you said makes sense and strikes home. Being broken is by far the most impactful. I’m exhausted, drained, helpless, and blessed. I’ve never thought to just let the brokenness out. Thank you for being honest and reminding me it’s okay to collapse at my Savior’s feet.
After I stopped crying, I retread and read this again. My five-year-old has been on this journey since he was 18 months old. And although I wished his road didn’t have so many twists and turns as he gains language – I feel blessed to hear every new word..sentence and thought. Thank you for writing so beautifully and sharing so exquisitely what we live through each and every day.
LOVE THIS! I feel like I could have written it myself word for word. My 4 year old daughter has apraxia as well. And yup, people don’t even remotely get it. Sometimes it is even hard for ME to get. Example, just recently a friend told us that there have been studies that show that you listen at the rate that you speak. It made SO MUCH SENSE. I’ve always wondered why it takes her so long to make a decision, or why her initial reaction is to just say “no” (and then change her mind shortly after she has really processed the question), or to be slow to disobey… but then obeys after 20 seconds of processing. It’s so wonderful when the Lord gives you truths about your child when you desperately need them and when all you want to do is fully understand your child and what goes on in their head! Thank you for this post!
What a way to start my Friday. Thank you for putting into words what so many of us feel every day – and for giving us the reminder to let go and let GOD. All of us need to do that more often.
God bless you and your family and thank you.
Thank you Laura so much for sharing this as I have a 3 yr old diagnosed with apraxia. You are so right they are such amazing children and you do get so excited over their milestones whether small or large. Yes, I too have had to explain it to ppl and they have said oh, he’ll grow out of it. They just don’t understand. Also when we first found out he had apraxia it was so frustrating not knowing what he wanted cause couldn’t communicate and he got frustrated and would cry. Now we use asl so he can communicate his basic needs and he will also grab my hand and take me to what he wants or needs!! Great article and thanks for sharing!!
Mary
I found your post on Pinterest. I could not have said it any better. What a great message for all us moms out there struggling with one of those diagnoses with a bunch of letters. People have no clue what it’s like to go through this kind of life. I’ve definitely been tempted to punch someone too…more than once! 😉 Thank you so much for this encouragement.
Thanks so much, Heather! It is difficult to “get” when you are not living it 🙂 I’m glad you stopped by!
Oh my gosh! you are an angle!! Now let me wipe the tears. It has taken us 4 1/2 years to get a diagnosis and I have felt all of the 5 truths. Thank you for letting me know that I am not alone in this journey that others have walked before me and are willing to help hold my hand on the path. My daughter is 6 now and has 3 day a week speech, she works so hard and is making huge strides. Thanks for reminding me to just keep loving her and turning to our Heavenly Father.
I really needed to read this today!!! My son is 2.5 and he have been trying for the past 1.5 to figure out why he lost speech and no longer says words. He has been in SP with Early Intervention through our State for over 1.5 and has made no progress. We recently put him in private SP 2 days/week on top of state therapy and he is starting to make very slow progress – private therapy uses the Prompt method while state therapist has never heard of the method at all. There are so many things he struggles with that other kids his age do not but he is so bright for his age yet because he can’t speak people don’t see it. It breaks my heart he can’t communicate his needs but i know one day he will and your post gives me home that he will get to a point where he can speak again.
My son is 3 with Apraxia. I loved reading these 5 Truths. I can relate to the ‘f’ sound….love that. When he’d bark like a dog, he’d say ‘woo woo’. One day he just switched to ‘roof roof’ and says that now instead consistently. It’s music to my ears.