Today my son lost something. It wasn’t a favorite toy or a tooth. It was much more important than that. He lost the diagnosis of Childhood Apraxia of Speech (CAS). He is 3 1/2 and until today has held a trio of diagnoses: Childhood Apraxia of Speech, Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD). His speech therapist gave him a re-evaluation today and she proudly told me we’ve done it. He can officially speak! His articulation and intelligibility is on par with typically developing children his same age. I am filled with emotion. We don’t hear typically developing often!
He was diagnosed with CAS when he was only 2 1/2 years old. CAS is a neurological speech disorder. Children with CAS have a disconnect between what the brain wants to say AND the ability to create intelligible speech. The research says it is very difficult to diagnose children with CAS as young as my son was, but it can be done. He had so many of the symptoms: regression in speech, difficulty producing certain sounds, inconsistent speech errors, groping or struggling trying to “find” words and difficulty imitating speech. He also had other symptoms that often co-exist with CAS such as fine motor skill deficits, feeding difficulties and oral sensory issues. The signs were all there. The Speech Language Pathologist gave him the diagnosis so proper therapy could begin. (Click here to read my blog Our Childhood Apraxia of Speech Journey for more information on the signs we saw and how he eventually became diagnosed.)
He started intensive speech and occupational therapy and his therapists taught us how to also help at home. We practiced things like blowing bubbles to help him learn to push air out of his mouth and sucking through a straw to pull air back in. We would stand in front of a mirror and make silly faces to show him different mouth and tongue positions. During meals we would work on sounds such as “mmm” and lip smacking.
We taught him hand signals as visual cues to help him create sounds using Easy Does It Hand Signals for Apraxia For example, to signal the “hu hu” sound (called the Doggie Signal – like a dog panting) you teach putting the hand in front of the mouth and huff into while making the dog panting sound so they feel the air they need to push to make the sound. The Hand Signals were so helpful as we went through the very slow process of helping him learn most sounds individually before we could help him move to saying words.
We also used a program called the Kaufman Speech to Language Protocol where you
start with tiered word approximations until the child can say the whole word. For example, saying bubble starts with “buh”, then over time you move them to saying “buh-o” and so on until eventually saying the word. The Kaufman Protocol, created by Nancy Kaufman, also includes specific speech evaluations to identify which sounds the child can correctly produce so the Speech Language Pathologist knows were the gaps are. For me, just understanding that word approximations were part of the process in learning to speak was helpful. Then I began to learn how to help move him up the level to the next approximation.
We also played a ton of games where we’d use engaging toys such as a farm house and farm animals and repeat sounds over and over and over such as cow says “moo”. I’d be super animated so he’d want to try and imitate. I learned a lot how play is one of the best tools in teaching toddlers to speak from Speech Language Pathologist, Laura Mize of Teach Me To Talk. I followed her podcast and YouTube. Each morning as I got ready for the day I’d listen to Laura and learn new, creative and engaging ways to use play to work with my son. From initially just teaching him to maintain joint attention, to pointing and using gestures, to making sounds, to imitating, and eventually to producing words and phrases, Laura was a great and positive resource. I felt she was there cheering us on every step of the way.
We also used a tool called Word FLiPS that helps teach functional vocabulary to children with limited speech. The words are divided into four articulatory categories so you can target exactly where your child struggles. He’d sit in the high chair and I’d just go over word after word with him. You can purchase it as a spiral booklet or as an app. I purchased the app and put it on the iPad and it was great because it tracked data so I could monitor his progress.
We also started heavily teaching sign language and used Rachel Coleman’s Baby Signing Time. We found that he wouldn’t even attempt a word if he didn’t already have a sign for it. His brain needed a kinesthetic jump. Also learning sign language while we were teaching him to speak helped bridge the communication gap and reduced frustration on his part and ours. For the first 2 to 2 1/2 years of his life sign language was a major form of communication. (Check out my blog Using Sign Language to Help Move Your Child Along the Language Continuum here.)
Another very helpful resource for us during this time was the non-profit organization apraxia-kids.org. I called and talked to them numerous times. They sent me literature, offered input in what to look for in a therapist and their website is packed full of resources. We also attended the Walk for Apraxia and felt even more support from this wonderful organization. They gave us support but more than anything, they gave us hope.
During this time, my son also received the additional diagnoses of ADHD and ASD. This added even more challenging layers to his communication struggles. Because of the ADHD, he was so hyperactive and impulsive which meant it was difficult to get the most out of therapy. Because of the ASD, he had a receptive language delay, meaning he wasn’t understanding language the way a neurotypical child did. Hurdle, after hurdle was being tossed our way. Nonetheless, we all kept up the hard work. We kept pushing forward.
After he received the diagnosis of ASD, my son started a full-time Applied Behavior Analysis program. Part of his ABA therapy is what is called “Mand Training.” Most children with ASD have communication issues. Mand Training doesn’t specifically target the ability to speak, but rather the attempt at using language to request. For example, prior to Mand Training, my son would grab my hand and bring me to show what he wanted. If he wanted milk, he’d bring me to the fridge. Using Mand Training meant he’d have to use language to request. Once we’d get to the fridge I’d wait for him to say milk. If he didn’t I’d prompt him. Eventually we moved to 3 word mands. If he’d say and/or sign simply “milk” I’d tell him to say “I want milk.” Even if it was unintelligible he’d get the reward for the attempt. The speech therapy was helping him gain the ability to speak, while the Mand Training was giving him a reason to learn.
There was no one specific miracle tool or therapy technique or iPad app or program that got us to where we are today, which is finally free of the Childhood Apraxia Speech diagnosis. It was the dedication of a team of therapists, his parents, the support of the non-profit organization and most importantly, my son’s hard work. My son overcame CAS at an age when most children are just receiving the diagnosis. The main points here: push for a diagnosis, get early intervention and don’t put all your faith in a one program approach. I truly believe that early intervention and our multifaceted approach is what helped him overcome CAS.
Now our good news doesn’t mean the hard work is over, far from it. My son CAN speak but he still has lagging communication and conversational skills. We are working on those in ABA therapy and at home. However, seeing what he has already overcome gives me the hope that he can and will conquer any obstacle that comes his way. He will, as I have said before, burst through the ceiling of his disabilities, into the universe of his abilities.
I’m not telling you it’s going to be easy – I’m telling you it’s going to be worth it. – Art Williams