Childhood Apraxia of Speech
I know a lot of people stress out about being a parent, and they even use that as an excuse to not have children. I will admit that being a parent is the most challenging thing I have ever done, but I have never particularly stressed out about being a parent. It is true, being a parent can be hard sometimes but being a parent is not hard because of the things I will do. It is hard because we all want the best for our children and when they suffer or something is wrong with them we suffer with them.
My three year old daughter has recently been diagnosed with childhood apraxia of speech and it has been a trying thing to cope with. I want the best for my daughter and there are many unknowns about apraxia. We don’t know if she will be able to ever talk normally, will she be teased at school, will she fit in?
Searching the Internet for information on apraxia of speech is not particularly helpful. Many of the websites out there that talk about childhood apraxia tell stories of kids that have never learned how to talk normally, have been teased for much off their time at school and have run up huge speech therapy bills trying to help their children.
Those are not the answers and stories I want to hear about what might be the future for my daughter. Fortunately those are not the only stories I have heard, and the speech therapist and other people that I have meet whose kids have had apraxia have been encouraging. My daughter also has several things going for her. She is smart, she has some sounds and with practice is able to learn more. She is also one of the most stubborn people I have ever meet. When she puts her mind to do something there is nothing that will stop her.
Only time will tell if my daughter will be able to learn to speak properly, until then we practice, practice and practice. We are hopeful that we might be able to get her into a special program that will help her get as many hours as possible of speech therapy and practice as we can. The progress she has made already made is hopeful. Every week there are new sounds and words she is trying so hard to make and we encourage her to say them as much as we can. I know it is a long road ahead to help her.
I am sure I will talk more about this at some point, but if your child has apraxia of speech leave a comment and let me know what your experience has been for you and your child.
Comments
Tanya
My son is 5 and this is his third year in preschool. He's had speech since two and his story at the moment is not great... yet. He will be starting Kindergarten next year and I'm still in debate about to have him go or homeschool. He still can't talk where anyone can understand him. Which as started problems about him learning in preschool. (His preschool is for "special" kids and he's still having issues at the moment.) I've also researched but all I find are stories on kids who had speech and got better. He's had a few SLPs and still has so many speech issues with nobody being able to understand him that I wish I could find more stories on what parents did when speech hadn't worked thus far at his age. All I see is that the kid got speech and now he/she can talk almost normal. :(
Tammy
my daughter is 3 years old and has been seeing a SLP for about a year. but this through a government program so she is only seen once every two weeks for 3 months then she has 3 month off. It is extremly slow progress but we can't afford a private SLP and that kills me. I have similar feelings-my daughter will be in preschool next year and how will she handel it? how will the other kids treat her? I want to protect her from any of the negativity she might experience. at the same time my daughter is very bright and super stubborn so i know she will be able to deal and understand and stand up for herself, i just wish she didn't have too at such a youg age. it makes me feel helpless i can't make her talk, i can't always protect her all i can do is practice everyday, be there for her and never stop believing in her. that's the key - beleiving and supporting.
Lee
It is tough. We keep practising and practising. My daughter is 4 now and she is talking in sentences. Some we understand some, not so much. The longer the sentence the harder it is for us to hear the individual words. But there are signs of hope. She is getting more and more sounds. Back sounds like K and G are hard, but we do hear them occasionally. Slow but sure wins the race I guess.
Kati
Hi Lee... You wrote on my wall about my son who has Apraxia. He will be 4 in May and does speak quite well actually especially since he started in August... He misses the K's and G's so kitty cat is titty tat, grandma is dama... but amazing to here your baby speak! Did she speak like J did? (ahhahhhahha) or was it silent? nice to meet you!
Lee
Hi Kati. Sorry about the double post on your site. Blogger gave me some error when I submitted it the first time so I did it a second. My daughter has trouble with the back sounds as well. K and G are hard, but we do hear the odd G from her these days. We are starting to understand her more. She just started trying to say her name. Exciting for us to hear her try.
Robin
My son Ewan was diagnosed a year ago when he was 3. He has improved alot during this past year with the increased speech therapy (2-3 times per week) and the knowledge that we have picked up about how to support him. I found alot of information at the CASANA website Apraxia kids. I also started a local parent support group here in Ottawa, Ontario Canada which has been really helpful as well.
Cheryl
My son Keaton also has been diagnosed. He is 3 and his brother is 5 (who spoke sentences at 16 months)!!! Trying to balance everyday life, working full time and controlling the 2 boys brotherly fighting is a challenge. He has been seeing a gov. SLP and we are now starting private SLP. It is refreshing to read other parents concerns. I am feeling pressure as he starts school in Sept and am worried about this confidence. Any tips or referrals would be appreciated, We live in Halton.
Clara
I am 14 and was dianosed when I was 4. I had over 20 sounds missing and was told it would tke at least to grade 12 and I'd never sound normal. We live 2 hours away from my therapist, so I missed a year of school to work on my speech. For a ling time we had to go weekly, but slowly it got more spaced. The best thing that happen to me was I got a cat of me very own. This was something the therapist told us to do. This helped so much because I tolked to him and wasn't judged. I believe my cat is why I have progressed so quickly. I am now in grade 9 and at the top of my class. The thing about apraxia kids is that we never give up. Yes, I was teased, I couldn't spell or say my name, and I had to work harder than all the other kids. But all this taught me to never give up and become who I am today.
Lee
@Clara Thanks for stopping by and commenting. Glad to hear you are doing well. I hope my daughter can progress well. She is strong willed and she does work hard. We have cats but she rarely talks to them. She does play with her Barbie's regularly and has conversations with them. It is really fun to watch when she does it. She has also started singing more lately. Not always clear but it does seem to be easier for her. We keep working and hoping she can overcome this challenge.
Clara
singing is easier because and comes from a different side of the brain tha talking.
Anne
Clara's comments are so inspiring and so remind me of our little boy, who is now 3 and also struggling with apraxia of speech. He too is unbelievably stubborn (or committed, depending on how you see it), which I think is a good trait for what he has to overcome. Our SLP has been a huge help. The hard part is actually doing all of the practice. We try and get at least 50% of the homework done between meetings but, with both parents working, that's a tall order. Our son *is* making progress, though. One thing that has really helped him is music. He likes to sing songs and, while a lot of the words are his own make-up words, a few actually come out as real words. I build on this by singing along with him so that he figures out slowly how to add in the correct sounds. I notice that he watches my mouth very closely when we do this. So, the key is to go slow and build on what he already knows and is comfortable with. I agree with the other parents here - it's not easy. We all want our kids to be happy. But there *is* hope and, truth be told, my son *is* happy - just not terribly verbal at the moment. As my own mother would say, "give it time and love". Good luck to the other parents out there. :-)
Amy
I sit here and cry as I read how well other's kids with apraxia are starting to talk. I've learned from 2 different SLPs that they believe my 3.5 year old son has apraxia of speech. Unfortunately, he does not have enough words yet to get a proper diagnosis. He has been seeing a speech therapist since he was 19 months old. He only has 3 words that he uses independently, "mama, uh-oh, and me" (which comes out as EEEEE) And he has only started using those words a few month ago. He will try to copy "More" and "dada" after you say it to him first. Most all the time, he just grunts. As hard as he tries, it is extremely difficult for him to try to copy sounds we try to do with him. He goes to a special needs preschool through the school district where his speech therapist has been using therapy to help his apraxia. Unfortunately, it's only 2 times a week and he only has one on one time with the therapist a for about 20 minutes during that time. I'm very discouraged. Lucky for me, my husband is much more optimistic than I am and he works very hard with our son. He is so certain our son will talk one day and does not worry about him nearly as much as I do. I only pray my husbands right. I would love for anyone with any insight or advice to contact me. I'm really struggling with this.
Lee
Hang in there Amy! It gets better but I will not lie to you it takes a lot of work and time. My daughter started speech therapy when she was 3 and she turns 6 tomorrow. When we started we only had a few sounds and words. Perhaps a few more than your son but not many. We learned some simple sign language to get by. Simple things like eat, drink, etc. Just to lower the frustration level for all of us. She picked it up fast from the DVD's we borrowed from the library. Now after three years she has a much larger vocabulary but we go for weeks / months sometimes it seems with little or no improvement, then she seems to take a jump and learns a new sound. Last spring she had a break through and learned a lot of new sounds but she has leveled off since then again. It takes time and hard work and I know there were/are times when it is hard to keep going. Some days we just do a little speech work because that is all we can handle other days we go for longer than usual but whatever work you can get in will help.
Peter poulos
My now 6yr old boy took 4yrs to say I love you daddy on his own,at one point it's all I had ever wished for but after years of intense therapy and lots of love and a mom who will never give up,there is hope.I would think his case is severe but proud to say he is in a regular grade 1 classroom and doing well without a shadow.A good understanding school helps and wondering since I may have to leave Quebec soon because asking him to learn French is a stretch and losing lots of valuable English lesson.How do Ontario schools fare in catering to these special needs?
Lee
You are correct a good school helps. We are very blessed to be at the school we are at and they are very helpful. I am afraid I know very little about the schools in Ontario, but perhaps another reader here will have some insight. Good luck in your decisions.
Christie
I'm just starting this process. After having a pdd-nos diagnosis for 3 years that never seemed to fit just this week we've had two professionals who we no longer deal with tell us that we should see is our son has apraxia. Apparently his old speech path from OCTC feels so strongly that she said to ask for a neurologist of dev. pediatrician to look into it further. Apparently speech paths can not give an official diagnosis in Canada. We discussed it in great lengths and when I brought this up with my sons school they feel like apraxia defines my son to a T. I don't care what his label is I'm just trying to get the appropriate help. Who does diagnosing in Ottawa?
Lee
<blockquote>Apparently speech paths can not give an official diagnosis in Canada</blockquote> I think this depends on the province. Here in Sask I believe a speech path can. Good luck in your search.
Heidy
My 3 sons, now aged 6, 4 & 2, all present with apraxia, word retrieval & storage difficulties. Thankfully, my 2 older sons were admitted to a special school in Montreal that caters specifically to language troubles. They have made stellar progress! we are so thrilled. However, for very frustrating gvt rules, my older son cannot continue at this school beyond a third year (he was not given a 'code' by the education minister), and so now the search for a new school in on... any suggestion in the Great Montreal area? Has anyone heard of anything?
Julie
@Robin, my daughter is 3 years old and has Apraxia. We have been seeing a speech therapist (recently weekly) since she was 18 months old and she is improving slowly. I have attended a webinar with CASANA and have ordered lots of reading material. I have been thinking about homeschooling her, to avoid the teasing she will very likely face at school. I really want to connect with other parents of children with Apraxia. I am interested in your Local Parent Support Group. Although we live in Iqaluit, Nunavut we are originally from Ottawa and visit for extended periods several times a year. I would like to attend a support group meeting, if that is possible, when we next plan a visit to Ottawa. Please contact me.
Genevieve
This message is for Peter Poulos, I have a nephew diagnosed with apraxia that lives in southern Ontario. He is almost 6 years old now and has been diagnosed 12 months ago. My sister is wonderful, she is driving to Detroit several times a week for his treatments (private) and has another therapist working with them in her city during the week. The school she is at do not have any experience which such diagnostic, and she cannot find appropriate services around (school system). Therefore, the whole family is not searching for Quebec schools that would offer language specialists. My sister needs more family support and wants to come back closer to us. Would you have any suggestions? We habe been searching for 6 months now, any help is a step foreward! Merci
Lucy Gardiner
My son was diagnosed in about 6 months ago. He will be 4 in March. He sees a speech therapist once a week. He's making improvements, but still has problems with some of the sounds. Especially t, d, j and l. Some things he says pretty clear, others are close but he substitutes sounds. If he takes his time I can understand him, but when he's excited or tired he'll start telling us something but he ends up looking like he's copying a fish (gaping with no sounds) and he wriggles his tongue in frustation. I try to work with him at home but alot of the time he just says he said that and won't try again. I was wondering if there was any help for me to figure out how to make the sounds to work with him better. I never pai attention to how my lips and tongue worked for each sound and am finding it hard to help model it for him. I'm in northern New Brunswick.
Lee
Good luck Lucy. Ask your speech therapist they should be able to give you some help. Hopefully you have a therapist that knows PROMPT http://promptinstitute.com/ and can help your son learn where to move his tongue. We found PROMPT trained speech therapists worked the best for our daughter but we never actually did it with her, just remind her of where her tongue has to go once the therapist taught her.
Rebecca
Hi Hiedy, Would you consider trying a private school? There are several good ones in NDG (just like the Mackay, lol) that specialize in children with these needs that cost approx $6000 if I recall correctly. I can get you the names and you can visit. Private schools for language/apraxia/motor planning will allow you to deduct half of the school expense (approx 6000$) as a medical expense if a doctor writes a note. Also, have you seen a Neurologist yet? If they order an MRI maybe code 33, mild impairment could be applied to your son. This is what occurred with my daughter,. A code 33 remains its the child until the age of 18! Lastly, you could always ask the Mackay if they'd accept your son to stay if you incurred the costs. Not sure if you are willing to pay though. I asked the principal and she said a child in school costs the school board 5000-6000$ /yr. a child with special needs costs approx $14,000. At least at the Mackay they get more gym, swimming classes, smaller class ratios, they feel at home because they've been there so long. Not sure if any SLP will be provided though.....might have to be private...ouch!! Lastly, if you register with your local school, shop around and get an transfer with another school if they offer more stuff. Clearpoint in Pointe Claire is AWESOME. Half the school has "special" children (downs syndrome, children with dogs, language issues, etc). I visited that school last year and fell in love. English families seem to all choose this bilingual school since the alternative of St John Fisher (although a great school too), is French Immersion and too hard for children with language/apraxia issues. Not sure if my ideas were helpful. I'd love to offer more ideas if you have specific questions. Rebecca
Caren
Heidy, I am near Montreal and my pre-school aged son was recently diagnosed. What school specifically caters to language issues? How would I go about getting him on an enrollement list. Information is scarce. Thanks!
Lee
Do not know much about Montreal, but here our SLP was able to refer us to one. You could also call the main school office. Usually they have some one that could tell you more about special programs available in the school system. Good luck.
Natalie
Hello Lee and fellow parents, Our 3.5 year old daughter was diagnosed with CAS on Saturday. She has been seeing a SLP for 6 months. We are currently living in the Cayman Islands, where our daughter attends a VERY understanding and helpful Montessori school for half days, and is nannied for the other half. We are from Toronto, Ontario and will be moving back there permanently, this December. Specifically, to the Durham Region (Whitby, Ontario). Are there any parents out there who can shed some light on schools/education/therapy centres for kids with CAS? I'd love to hear from you all. Feel free to email me at [email protected]. I appreciate the support.