10 Things Other Parents Need to Know About Childhood Apraxia of Speech

Today I am sharing this heartfelt post from Alexandria about her almost 4 year old son Ian. I know her information will empower and educate someone else in the same situation! The rest of this is her writing!

Since he was about 18 months old we have had him enrolled in early intervention classes through the school district for speech delay. At almost 4 he still can only babble but is just starting to mimic and pick up sign language! We are looking into Childhood Apraxia of Speech as a diagnosis for his struggles and looking into more one on one visits by a Speech Language Pathologist in the upcoming weeks.

He has been in preschool since Decemeber 2014 but has made little progress and struggles to communicate with his peers as well as us. It makes day to day life a struggle and he gets frustrated very easily because he just cannot tell us what he wants. He is extremely smart and has met every other milestone for his age. This is our everyday life with a Speech Delayed child.

10 things other parents need to know about Childhood Apraxia of Speech. #SpeechDelay #SpecialNeeds Click To Tweet

10 things other parents to know about Childhood Apraxia of Speech:

1. In hindsight, my child’s symptoms were: He barely babbled when he was little, compared to his younger brother who is now almost 6 months old and is a complete chatter box. We always thought he was just a “thinker” not a “talker”. He always seemed to be in his own world just focusing on everything so intently without having the desire to communicate using words.

2. The specialist who helped us the most: The teachers at the Jordan School district here in Utah at the Kari Sue Hamilton School. We met with a lovely girl who came into our home to work with Ian one-on-one before placing him in early intervention classes and then preschool at 3 years old. Her insight into speech delay was invaluable and I appreciate her tremendously. She got us started on the right foot to getting my son the help he needs.

3. The specialist we didn’t expect to need: A Speech-Language Pathologist. I thought I could do everything myself and that working with him on my own was enough. I needed guidance though, I needed to be shown how to help him because I am not a specialist. Just reading things on the internet was not enough to qualify me as such.

4. It took us this long to get a diagnosis: We are still looking for a diagnosis… In the upcoming weeks we hope to see another specialist that can give us a definitive answer as to if he has Childhood Apraxia of Speech. If he doesn’t then we are just starting from the ground up all over again, with just as many questions.

5. The biggest financial expense because of this medical condition is: We were blessed to be able to go through the school district right now. It was free for his in-home visits and his classes twice a week. Going forward with my husband’s new job, we will not qualify for this anymore. We will have to pay for each in-home visit with a Speech Language Pathologist. These visits can cost upwards of $50-$100 per hour, and if he needs multiple visits in a month that can really start to add up quickly. It scares us that we will spend all this money and it not help.

6. The organizations that helped us: Early intervention classes and visits through our local school district. I urge parents who may feel that their child just is not reaching that milestone to get help early! Start the process when they are young and it will be better for the child.

7. I wish my friends and relatives knew: My friends and relatives still do not understand really what is going on. I hear, more times than I want to, “He is FINE, he is just stubborn and does not want to talk!”. This does not help… This does not give me solace. This just makes it even more frustrating because I see my son on a daily basis get upset because he cannot communicate. You honestly think that if he could communicate with us he wouldn’t? That he just chooses to not speak? I beg to differ. It breaks my heart when he gets upset because I cannot understand him and he cannot tell me specifically what he wants. It is a daily struggle. That is not a choice he is making. He tries and he wants to speak. He just can’t form the words. He is literally a 4 year old with the language of an 18 month old. I cannot even imagine how frustrating that must be for him because he is extremely smart. He functions like any other normal 4 year old boy.

8. Our ray of hope: Our ray of hope is the thought that one day when he is maybe 10 years old, we will look back on this time in our lives, the daily struggles and frustrations and see that we were doing everything we could, and he got to where he needed to be. That at 10 he is speaking clearly and is just a normal 10 year old. That is my hope for our future. That this time will just be a thing of the past.

9. Our biggest cheerleaders and supporters: My husband and I are on this path together as young parents and we take every day as a new day, a new day to conquer. One new sign that we learned together, one new syllable heard, one more “Wait did he just say…?”, one more step. We battle it all together. I am not saying our families are not supportive because that is untrue, they are just 400 miles away most of them. My Mother was the first one to urge me to put him in early intervention classes and then preschool so he can interact with people. I am a stay at home mom and all my family is back in my hometown of Las Vegas and he was an only child up until March of 2015. Even when I was struggling with severe separation anxiety about leaving him with his teacher in school for just a couple hours, my mother was there on the phone telling me that he needs it, it will help him. I am glad that I did it, it has helped him learn to interact with other children and adults besides us.

10. I wish I had known: I am not sure what I wish I had known because I don’t think any first time parents knows what to expect. I had no idea that I would be the mom of a speech delayed child because I never even knew that it was even a thing. I never knew a young child with speech delay, every little kid I knew or watched was speaking around 2. I was just blindsided when his 2nd birthday came and went and he still was not forming words.. We just sort of expected that he would talk when he was ready but that day never came. I believe that he would talk if he could but he just can’t. We just take it day by day and hope for the best in the future. It will get better, every day he is growing and learning. I am blessed to be his mom and I would not change it for the world. I will do whatever I can to help him because what mom wouldn’t in my situation? We only want our children to have the best and I will do whatever it takes.

Thank you, Alexandria. I hope you get answers about Ian’s speech delay and that he improves with time. You sound like an amazingly strong mama. You are lucky to be his mom and he’s lucky to be your son!