FAQ’s
Friday, July 30th, 2010I really enjoy hearing from people who find my blog. It encourages me to keep writing and sharing. Over the past couple weeks I have received a lot of e-mails from concerned parents. I thought it might be of value to share some frequently asked questions. The information here is only my personal experience with my son and his Childhood Apraxia of Speech. Always check with your doctor, SLP, ect.
What all have you done for therapy?
Luke began play therapy at about a year and a half old through our local regional center. He received one hour once a week. This was the first step to try to encourage him to make any sounds. Mimicking animal sounds, car sounds, any type of verbal expression through play therapy. After a few months occupational therapy was added (one hour once a week). This mainly addressed oral motor weakness and overall coordination, and muscle strengthening. Luke had play therapy and occupational therapy until age three.
At two years old he began one on one speech therapy at Lucid Speech and Language Center. He receives two thirty minute sessions per week.
Luke also began a preschool program two days a week (four hours per day) right at age three. He is currently off for summer break. Preschool is a mixed class of half typical developing students and half special needs students. He received one hour once a week of group speech during preschool as well.
You mentioned twice a week?
Luke has been attending speech therapy twice a week (thirty minute sessions) for almost two years now. We are officially taking our first break. We are going to take four weeks off this summer and resume with speech in the fall.
Oh my, after typing out that list of therapies, I can say it is a WELL DESERVED BREAK!
How old is he now?
Luke is just a couple months shy of four.
Did you use PROMPT or the Kaufman method?
Our therapist used the Kaufman method. It worked really well for Luke. Luke has an amazing SLP who is well trained in the Kaufman method but also uses her own techniques and changes the program to fit Luke’s needs. We have used some aspects of PROMPT therapy. Several parents have told me PROMPT therapy has worked well for their child as well.
Where there any exercises that you found particularly helpful?
This answer would be so long, it could run for five pages. I will try to narrow it down. I encourage you to take some time to read through some of my older posts. At some point I hope to group all the activities and ideas together for easy reading. I just haven’t had the chance.
In the beginning all of the oral motor activities were very helpful in just stimulating the mouth. Ideas like;
Blowing bubbles, blowing whistles, blowing milk bubbles with straw, blowing cotton balls with a straw (have cotton ball races), peanut butter or jelly around the mouth (child has to lick it off), Jigglers(vibration) to rub on cheeks and mouth, introducing variety of food, lot’s of textures and flavors (sour, spicy, crunchy), motorized toothbrush at least twice a day, ditching the sippy cup, learning to use a straw, sucking thick liquids through a long wide straw (applesauce, pudding, fruit smoothies, milk shakes). Just to name a few.
The Kaufman method- using the Kaufman flash cards has worked wonders for Luke. It is so important to have the visual cues! CUES, SCRIPTING and PROMPTING
Our favorite language game has been Read and Rhyme by Lakeshore.
Helpful exercises change as you go through different stages of therapy. Overall just creating a language rich environment. Talking, talking, all day long (slowly and simply), singing and music, games, puzzles, sign language, reading together, crafts, blocks, pretend phone calls, dancing, playing with baby dolls, labeling EVERYTHING in your child’s world, and having adventures!
I remember some days I would talk and repeat things so many times that by the end of the day I just wanted to cry. I remember laying in bed one night just thinking, I don’t ever want to talk again. But these stages pass!
Did you ever give him fish oil?
Yes, I did have Luke on fish oil for a period of time but I did not notice any difference. I hear from parents all the time that swear by it. So I encourage parents to check with your doctor and give it a try. It cannot hurt. I will likely try again.
How is he doing now?
Luke is doing really good. He is able to say most anything he wants now. Sometimes he has to stop and think about what he is trying to get out. Especially when he gets very excited and is talking really fast. He may have to take a couple of attempts at it but he is usually successful. We are still working on more sounds. We still have more to master like, S, SH, and F. Sometimes it is hard to see the progress when you are in the situation. Many family and friends that don’t necessarily see him all the time give us wonderful comments on how well he is doing. Also how well they can understand him now! He can even sing!
Are you hopeful and confident that Luke will have a normal pattern of speech?
I am VERY hopeful and confident Luke will have a normal pattern of speech. One of the best things I did was attend a Nancy Kaufman conference on CAS. She has worked with children for over thirty years. Besides thoroughly explaining CAS and treatment therapies (it is actually geared for SLP’s, but it is open to parents as well) she showed videos of children she has worked with. Some of these children had very severe disabilities, and guess what, they learned to speak! Some had very severe Apraxia, and guess what, they learned to speak several languages. How about that! It was so inspiring to see these young children (like Luke’s age) struggling and working hard in speech. And then to see them grown up, in college, doing all kinds of challenging jobs. Yes, it leaves you feeling very hopeful!
I have also heard from a friend who’s son went through the same thing. After years of therapy, her son finally graduated from speech and you would never notice any difference in his language.
The hard part is it just takes time! How much time? I’m not sure. The friend I mentioned, her son graduated from speech at eight years old. Then I hear of children with CAS that start therapy at two and are totally done by age three. There is just no specific answer or time. Every child is different. I feel Luke will be in speech (of some sort) for several more years, but I am hopeful he will have clear and normal speech.
What have you told Luke about Apraxia, and how do you word it if you tell him he has speech issues?
I’m sure Luke has heard the word Apraxia spoken around here many times. I have talked with Luke several times when he was frustrated or having a melt down. It has always been in just a positive or encouraging way. Things like just letting him know how proud I am of him, how hard he is working. We have cried together. Many times there was just no needs for words, he knows he struggles. I found that hugs and holding always make both of us feel better!
Did you find it has been hard to get two syllable words?
Yes, it is a big step to get up to two syllable words. It is also hard to master vowel, constant, vowels(CVC), as well. It took a long time for Luke to reach that milestone. It is hard for children with CAS to change positions back and forth like that. For CVC’s one suggestion would be to choose words like, pop, bib, mom, dad, pup. You are starting and ending with the same sound.
The past two years in general have been challenging. Maybe somethings have been easier than others, but Luke has worked hard all the way along. I believe his determination has been fueled by many factors. One of the most important being his connection with his speech therapist! She has never given up on him. At times when I as a mother just thought, O.K let’s just skip this, it’s to hard. he’s not going to get this…Guess what with patience, hard work, and good motivation he would do it! I can’t tell you the times I was just totally surprised at what they would accomplish. It’s just like with any thing in life, there are people who just naturally have a gift at what they do. She has a gift!
I have considered making a trip to the Kaufman center, but I’m not sure if that would be premature since I don’t have a diagnoses?
In my opinion it is never premature to start investigating your options. Time is precious. Your are the parent. You know your child best. If you feel there may be a problem, I wouldn’t hesitate to start searching out programs. I know Nancy Kaufman accepts (for a fee) videos sent in by parents. This is a comprehensive screening and can gauge if your child would benefit from coming to her program. Click here for more information.
I would also recommend Lucid Speech and Language Center. Megan McCann is the clinical director. She has a web page specifically dedicated to answering questions. She is extremely knowledgeable and willing to send parents in the right direction. She may also be willing to do a video assessments to determine appropriate treatment plans for your child. Click here for more information.
Start searching your local area as well. There is a good chance you can find a therapist who really knows and has treated children with CAS. I hear from SLP’s who find my blog all the time. There are so many good therapist out there that are committed to helping children learn to speak.
Is a trip to see a pediatric neurologist or developmental pediatrician typically a next good step?
Apraxia is a neurologically based speech disorder. I would recommend a trip to see a pediatric neurologists most definitely. We had a few trips to the neurologist when we were worried Luke was having absences seizures. He had some testing done. It was a very scary time for us. Thankfully after a few months every thing just seemed to resolve itself.
A developmental pediatrician is also a great idea. It’s always a good idea to make sure you are not over looking any other issues that could be going on. Second opinions (and thirds) cannot hurt!
Also don’t forget to add a trip to the Audiologist, or an ENT. Always rule out any hearing issues. Luke had chronic ear infections and ended up having tubes put in. This was the best decision. After he had tubes put in, he never had another ear infection. It gave him a chance to regain his balance and made a world of difference in his over all heath.
There are some common things I hear of again and again from parents with Apraxic children. Chronic ear infections and seizures seem at the top of that list.
How do I know what techniques and qualifications to ask about, or look for in an SLP?
I would just ask how many children they have treated with Apraxia? What types of methods and techniques they use? What were their results? What types of testing they use to asses children? Will they allow you to attend the sessions with your child? I know it is not always ideal to attend speech sessions for every child but I found this to be the most helpful thing! I could see how Miss Megan worked with Luke so I could follow her example at home. You are with your child all day. Your SLP only spends maybe an hour a week with him/her. It is important to have a good understanding of what you should be doing through out the day.
Our son tends to stay away from groups of other children and avoids interactions with anyone he is not familiar with. Is it something Luke has experienced? Any ideas to make those situations better or easier?
Yes, Luke has pretty much been attached at the hip. Things are so much better now. Looking back I realize, there were many factors that kept him close, the first was ME! Right or wrong as a parent you want to protect your child. You do not want to see them put into a situation that makes them feel uncomfortable. I think that makes you very cautious (even if you don’t realize it). I often felt the need to explain Luke’s speech problems. A lot of times people would ask me. Especially when we used sign language in public. I was asked a lot, is he deaf? At that point I was Luke’s translator. It only makes sense, of course you don’t want to be in a foreign land where no one understand a word you are saying, without your translator! Luke seemed to have a hard time trusting people and warming up. He felt more comfortable with people who understood him. People who knew what his signs meant. Here is a list of things I feel really helped;
Hardest thing ever for me (still working on it) LETTING GO! Allowing him to find his own way through
Not pushing it, letting things develop in time
Having friends or family come over and play with him. Even if it was just for an hour while I was still in the room. My sister would come over one hour a week. She brought in his favorite things and did crafts with him. It’s amazing how children will warm up to people when they walk in with their favorite toys 
Allowing plenty of opportunities for social interaction—PRESCHOOL
We always have a very busy house. Luke has an older brother and sister. This house is always packed with cousins, friends, and neighbors. This has probably helped more than I know
Do you have any advice on how I can get an official diagnoses?
“I don’t feel I can fight very well for my child, when I can’t get one person to stand behind a diagnoses!”
I hear again and again parents say they cannot get a diagnosis, or that their SLP is not ready to commit to a diagnoses until the child is older.
Find an SLP who can skillfully administer the Kaufman Speech Praxis Test for Children. It is just as simple as that. The Kaufman Speech Praxis Test can be given at two years of age. It will simply identify what level your child’s motor-speech skills are at. It will allow your child therapist to target that level and begin treatment.
I know completely and understand how frustrating it is to not have a diagnosis. As parents we want concrete answers. Does my child have CAS ? If not then WHAT is the problem? Read here…
How do you not blame yourself?
I did blame myself at first. Lot’s of thoughts raced through my mind. I thought maybe I just wasn’t as careful with my third pregnancy. I was angry with myself for not being more demanding with the labor department at the hospital. Luke’s birth was very dramatic. I always felt his issues were caused by neglect on the part of the nurses and doctor. If I had been more proactive and had a better plan, maybe things would have been different. But you can question this and question that and at the end of the day you have got to come to terms with the fact that you cannot go back in time and change things. Holding onto anger with doctors, nurses, and yourself is going to do absolutely no good for anyone. After some time feeling angry I just decided to turn the page. This was just out of my control, but what is in my control is TODAY, and getting my son help was the most important thing and became my mission.
Other than relying on God, what else helped you accept and come to terms with your child having severe speech issues?
I believe when you have a child and something goes wrong (no matter how big or how small) there is a type of grieving process that you go through as a parent. It takes time to work through it. You never want to see your child struggle. That is painful, very painful. It’s just something that you never prepare for. I cried a lot. I worried a lot. I took out my anger on people around me. I isolated myself. Once I worked through many emotions, I realized all of that was going to get me no where, and far more importantly it was going to get my son no where. What Luke needed was for me to pull myself together and start finding him help. He needed a strong support system, he needed me to get tough. Which was something I had never been in my life.
I started researching everything I could. I started talking to people. I started writing, connecting with other people who were going through the same thing. Our family began signing with Luke and became excited about learning a new language (and thrilled to see him start expressing himself through sign). There was a point I had resolved myself to the fact that my son may never talk but felt peace we would always be able to communicate with our hands. Even the extended family all rallied behind him and began learning his new language. We found a wonderful therapist (Lucid Speech). It took months and months to see real changes but CELEBRATED THE LITTLE THINGS! I always (and still do) remained focused on all the things Luke CAN DO! I realized this was going to mold Luke into the person he was born to be. I became GRATEFUL and feel blessed that God entrusted such a sweet special boy to me.
I Had such a turn around in my heart. I went from wanting to get through all of this and then just burn every last record, every test, that my son had gone through. That just wasn’t the plan. I’ve be able to share Luke’s story through videos, blogging, writing. I was thrilled to have an article published about our journey. I learned to let go of my silly pride, and try get real with myself. I have always wanted to reach out to other people and let them know there is HOPE, and lot’s of it. Sometimes things just take time!
My mother-in-law told me a very important piece of advise very early on in our journey. She said, don’t find yourself so consumed in all of Luke’s speech that you miss out on this precious time with him. You will never be able to get these moments back. Don’t worry so much, ENJOY HIM!
Please, if you have something to add that could be of help to others, feel free to share under the comments section.
If you are a therapist who works with Childhood Apraxia of Speech, please comment so we can find you!
