Oh.....speech.....sigh. It's SO hard for Zoya. Currently, Zoya receives outpatient speech therapy at the local hospital once a week for 30 minutes. Before she turned 3, she got speech for an hour every other week at home. With it being summer, she is only receiving minimal therapy through school. She can say 10-15 words, although they don't always come out the same way....she has lots more approximations, but overall, her speech skills just aren't really close to her other skills developmentally. About six months ago I started wondering about APRAXIA, which is a motor planning disorder that makes speech pretty difficult. Just recently children with Down Syndrome have been getting diagnosed with apraxia more and more. The old theory was that kids with DS couldn't also have apraxia, but more recent research shows that is not true. Apraxia is also referred to as childhood apraxia of speech, verbal dyspraxia, or oral apraxia.
Here is a definition of apraxia taken from http://www.asha.org/public/speech/disorders/childhoodapraxia.htm:
Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.
Zoya is a tough cookie to figure out. She shows some signs/symptoms of apraxia but other things she shouldn't be able to do with apraxia, she can. All cases of apraxia present a little different so it's not exactly easy to figure out in some kids. Zoya's inconsistency in words/sounds is a big concern as well as losing words after she has learned to say them. For an example of inconsistency...the word "baby." Sometimes it comes out sounding exactly like "baby," other times she will just say "ba" or "baba." Vowels are very difficult for Zoya. She will learn one vowel, like long o, and then learn long e and no longer be able to say long o. She can imitate many isolated consonant sounds, but gets all mixed up when trying to produce more than one syllable. She also cannot mimic movement of her tongue like she should be able to. If I say stick your tongue out, she can do that, but she cannot move it up or down or side to side on command. It's just kinda there wiggling around, trying its hardest LOL.
So no therapists, until today, have been able to answer this question: "Is Zoya's speech developing sequentially like it should be, just delayed?" Kids with DS meet milestones, typically they just meet them later than children without developmental delays. This would be true for speech as well, and I hear the magic number for speech to really start taking off for kids with DS is around 4 years old. So, since Zoya is only 3, most therapists have had the "wait and see" approach....just saying, "she'll get it, let's just wait and see..." meanwhile just doing the same play therapy over and over. The play therapy has been great for Zoya's language skills, but has not done a whole lot for speech skills. I don't really like anything about the "wait and see approach" since she already waited the first 22 months of her life with no therapy. I've been pretty frustrated with speech therapy to say the least....up until today.
Today we drove to Buffalo, an hour and 45 minute drive, to meet with a couple therapists who are trained in the PROMPT speech technique. For the first time I felt lots of hope for Zoya's speech progress. These ladies are amazing and so knowledgeable about speech in general, and specifically apraxia. They are highly trained and LOVE what they do. They are in it to HELP kids and want to see progress just as much as I do. It is not JUST a job for them. I could tell that even before I met them, just talking on the phone to them. One of the therapists has a son who was diagnosed with apraxia and the other therapist was her son's therapist so they make a great team. They do all the evaluations together and then we will work with just one of them for therapy. They were shocked to hear that during the school year Zoya will only get speech therapy once a week for 30 minutes....and that is not all one-on-one either. They both work in early intervention through preschool age and said if we lived there Zoya would definitely get speech therapy through the school THREE to FIVE times a week! I said, "Well I guess that's why we are here." And they said, "Well I guess that's why out state is bankrupt and yours isn't." HAHAH.
They pretty positively told me that Zoya's speech is NOT following a typical development pattern that you would see in most children with DS. They saw many signs of a motor planning disorder such as apraxia. They were impressed with her jaw strength and muscle tone so we do have that going for us! There were lots of things she could do that they were very impressed with....so it wasn't all bad news. Although I could care less about whether or not she is diagnosed with apraxia, I DO care about the techniques that should be used with her based on the fact that she is likely apraxic. Traditional play therapy techniques do not help apraxia. Zoya tolerated the PROMPT technique very well and I have high hopes it will help her learn to speak. They don't solely do the PROMPT technique, they have some other tricks up their sleeves, but their overall approach REALLY impressed me! She may never speak in full sentences (or she may) but she can definitely learn some functional language to communicate her way through life. When they said there is a motor planning disorder, I had a brief moment of sadness and got a lump in my throat and wanted to cry, but I got over it quickly and was almost relieved to hear someone say what I already knew. Mamas should always trust their instincts. So now that we've got an idea of the problem and a way to help it, I feel a lot better. The only problem is that it will not be fun driving an hour and 45 minutes one way once a week. It is also private therapy and out of state so that means insurance won't cover it. So I told Shawn he needs to sell more drugs (no worries, he is a pharmacist, so he legally sells them!).
I'd love to hear from other DS Mama's about what their kiddos receive as far as speech services.....how many hours/sessions per week and any specific techniques used? What has been helpful for your children in the speech department? Other Apraxia/DS Mamas out there? My next topic of research that I'm just starting to dive into is Augmentative and Assistive Communication Devices to help be her voice in the meantime.