Help Daniel Attend Life-Changing Speech Camp

In Daniel’s almost 6 years of life, he has had a couple of obstacles to overcome. The first was when he was just 3 days old and needing life saving open heart surgery. this was due to a congenital heart defect that was found during the anatomy scan at 20-22 weeks gestation. Since the surgery, Daniel’s heart is fixed and only needs yearly checks up. The second obstacle has been his speech. This is a daily struggle for him and those that interact with him.

He started speech therapy at around 18 months per his pediatricians recommendation, as he had zero words, along with extreme meltdowns. For the next 2 years he received speech therapy weekly, then 2 times a week for the next year and a half. While there was progress made in his behavior and speech, it was minimal in the speech. Something wasn’t connecting. He was trying so hard to get out his words, but it would sound like baby babbling, or what we would refer to as “speaking in vowels”.

during the last 4ish years, we’ve had hearing tests, vocal cord scans, autism testing, and a whole lot of research in all different speech delays and disorders. When I came across Childhood Apraxia of Speech (CAS), Daniel fit the bill. Missing sounds, trouble forming words/phrases, inconsistent speech errors, trouble producing consonant and/or vowel sounds…to name a few. And in 2023, one of his amazing Speech Language Pathologists (SLP), looked into it and unofficially confirmed my suspicions of CAS.

What is CAS?

CAS is a rare neurological motor disorder where the brain has difficulty coordinating the muscles used for speech. With appropriate and early intervention, children can develop functional speech, but its very likely that children will still need speech therapy well into adulthood.

Thankfully, Daniels SLP re-educated herself in CAS, as she had only seen one other child with CAS in her 20 plus year career, and treated Daniel the best she could. However, he lost those state services because of his age and it was up to us to find someone who was specialized in CAS. During our search, we realized how far and few CAS specialists there were. We do what we can at home with some tools catered to CAS, and he finally got a weekly spot in speech therapy, though it is not with a specialist, we figured its better than nothing.

Last year we found a program in Texas. This program is specifically for CAS, an intensive, 3 week camp where they only accept 8 kids (ages 3-6) each year. We applied last year, but sadly didn’t make the cut. They urged us to reapply this year, so we did and got accepted! As far as all my research has taken me, there is nothing like this camp. Tailored for each of the 8 kids attending, provides tools and material to take home for continued therapy, SLP’s trained by Nancy Kaufman- a renowned expert on the CAS topic.

Daniel is just like any other 5 year old. Full of energy, opinions, and stories. He is a sweet boy who loves dinosaurs, monster trucks and paw patrol. He enjoys going to Pre K and playing with his friends. When I pick him up from school and ask how his day was, sometimes he just says “good”, other times he goes more into detail and I have to pretend to know what he is saying. In fact, that is something we have done from the beginning. Even though there has been more times than not that we didn’t know what he was saying, we pretend. if we were to question him too much, day after day, it probably would have killed his confidence and he wouldn’t see a point in talking anymore. Even so, as Daniel gets older, he notices that he talks differently and worries other kids wont understand him. This will be life changing for Daniel and our family.

Your donation will go towards the cost of the program and travel expenses. Thank you for your consideration in donating or offering well wishes and prayers. We appreciate all of you so much!