While I am by no means an expert in Apraxia, I have certainly been learning a great deal since my daughter was diagnosed with it. Here are some of the things I have learned.

People have no clue what Apraxia is. I can understand that, I did not either until my daughter was diagnosed with it. The problem is, after you explain it to them, they still do not get it and say stupid things like, well she will grow out of it, or she will get better. Next time someone tells you their child has Apraxia, don’t try to make them feel better by saying things like that. Their child will not get better, they will not grow out of it and it will be a long hard road for them and their child. Their child will need a lot of speech therapy for many years, and even then there is no telling whether or not the child they love will be able to speak reasonably normal.

That some rules do not make sense. For example, my daughter was under the care of a speech therapist with the local health district, when she started school she could no longer be seen by the speech therapist that is part of the health district. In this case that is alright because my daughter is in a special school where she gets speech therapy twice a week for 20 minutes each time. The average amount of time a student gets in the public school system is 15 minutes a week with another student. My daughter is lucky, but when she moves into the regular school system that will not be enough time. The rules of the school and health district state that my daughter cannot be seen by a speech therapist in the health care system if she is part of the school system. Children with Apraxia need much more speech therapy than the school system can provide, their rules are not helping children, they are harming.

Private speech therapy is expensive. While my daughter is getting more speech therapy in her school than most, we have decided to hire a private speech therapist. While she is expensive in the few sessions my daughter has had they have been good. Progress is slow but my daughter has shown a willingness to work with the new speech therapist and hopefully she can help my daughter learn how to talk faster.

The Government can help. I know it shocked me as well to learn that the Federal Government can actually help kids with Apraxia. While the rules of the local health and school do not make sense and private speech therapy is expensive, the Federal Government offers the Disability Tax Credit. Children with Apraxia qualify for this tax credit and all you need is your speech therapist to fill out the form and then you send it in. The money we are getting from the Federal Government Disabilty Tax Credit is what is paying for the majority of the private speech therapy. All the help I can get for my daughter the better.

It is challenging having a child with Apraxia. I wait for the day that my daughter can tell me how she is feeling or say “I love you Daddy”. While she can communicate in many ways and is smart we live in a world where verbal communication is important and I just hope that my daughter will be able to be a part of it.

31 comments

Hang in there Lee. Whether it’s fast or slow, she’s making progress. (And, I’m glad to see the government is doing something!)

I can’t even begin to imagine how hard this must be for you all. And, I really wish I could say something to make it easy, but there just isn’t. Just know my thoughts are with you and yours.

I at this moment have tears in my eyes..I have been fighting this for the last three years with my daughter..she is 51/2 yrs old and might on a good day have a 25 word vocabulary. I feel your pain and your struggle. I two have been told that because my daughter receives spech through her school she is not eligible for outside help. I have been searching for a year for a private speech therapist but do to our Northern location it is looking like we will have to move to find one. This is very frustrating.. my daughter has not been diagnosed due to the fact that my family doctor had us running in circles to see if she infact was not hearing us. I keep repeating myself no she can hear every damn word you say. She follows direction beautifully and completly understands you. It wasnt until Google help me by entering ” why can’t my 5yr talk? ” into the search engine. I have hope I have found people like yourself and at least online Emma and I dont feel so alone anymore THANK YOU!!!!!!!

Good luck in your search for a private speech therapist. It can be hard even in a city to find one that is available and can help. I have heard stories that even in Saskatoon, it is difficult to find one. Here in Regina we have been extremely lucky to get the speech therapist we have. We had a rough year the first year my daughter was at the communication preschool having a private speech therapist quit on us and us having a difference of opinion with the speech therapist at the school. Long story, but the short of it is we now have a great speech therapist in Regina and Apraxia is something she deals with regularly.

I feel you pain with your family Doctor. Family Doctors know NOTHING about Apraxia of Speech in kids. I bet when you told your Doctor what your daughter has they had to go and look it up.

Hang in there and keep fighting for your daughter!

Myson is almost 4 he does not talk I’ve had him in speech therapy since he was 2 in Texas there is a program called ECI “EARLY CHILDHOOD INTERVENTION ” its a God program and speech Therapist comes to your house but only up to age three I now have him doing speech therapy at School twice a week 30 minutes each time and I take him to a rehabilitation center for therapy twice a week 30 minutes there also and my son can only say like at the most 20 words can’t not say one sentence they just told me he might have this I need more info

It is hard and I know it how frustrating it can be. One of the questions we always have for every speech therapist is “what do you think the odds are for our daughter to speak normally?” No one can or will give us an answer. So we keep working at it doing the best we can do. Please come by and let me know how things go. I think us parents need more support and that is not something that the health and school systems do very well it seems. At least there are no Apraxia support groups here.

Good for you for sharing the information you have learned about apraxia to others.. My son is now 10 and has global apraxia. He speech has greatly improved with a lot of hard work but you are right. Apraxia doesn’t go away and as he gets older there are new challenges ahead, social situations, academics and sports/physical activity to name a few. Keep plugging away and educating people about it. It paves the way for children and parents that will begin their journey after us.

I have been scouring web sites for years. Our beautiful grandson Ben has been diagnosed with Global Delay and does not speak. He is 8 years old now and what a journey for a family. His parents have certainly tried every therapy available. He recently completed a Listening Therapy session and continues twice a day at home. Grandpa and I are thinking of taking Ben from school one day a week and working with him. There is a very bright boy inside – we all can see that. I am looking for activities to help me out at home. Each of your stories are so inspiring.

Hi Lee,
I share your pain. My son NIcolas who just turned 4 in Aug was diagnosed last yr with Apraxia. It is a long road and i’m not sure i i know everything about it despite all the reading i do. I am constantly second guessing every move i make. Am i doing the right thing for him. Where do you live? I live in MA and i am fortunate enough to have him receiving speech therapy twice a wk for 30 min 1:1 and the 3rd day she works in the class rm with whole class and does a speech session. His speech Therapist in school had a grand daughter with Apraxia. I feel confident she is competent to help him. I also take him to private speech therapy 3x a wk for 45 min sessions 1:1. The progress is so slow it’s unbearable. Some days i look at him and think he is going to be ok and other days i don’t know what his future will hold. I too have asked his therapist what they think his prognosis will be when do they think he will be able to talk where others can understand and they won’t answer. I feel like if they could just give me a number 5yr 6 anything i just need to know there is a light at the end of the tunnel. I know i didn’t help you at all but i wanted to let you know you are not alone. I wish you and your family the best of luck. If you ever want to chat u can email me any time. [email protected]
Darlene

We work with our daughter everyday, but it would be next to impossible to get her that much speech therapy here I think. The private therapist we have hired is pretty booked up, but we could not afford to have her here 3 days a week. Some days are better than others for practice, and my daughter does max out some days. She just says “NO” and that is it, there is no more for a little while. Can’t blame her, we have been pushing her hard lately.

I think they do not want to give an prognosis because they simply have no way to tell, and they don’t want to be wrong.

No need to help. I wrote the post mostly because I was just frustrated and needed to say it. I was sure there would be others that are frustrated as well.

Hi Lee,

We’re going through this too with my 2 1/2 year old son. He has made great gains recently. It is so hard not knowing what the future holds. Every kid with apraxia seems to be different as far as progress and prognosis so there’s no way to know. We’ve found a great private speech therapist who is giving us alot of guidance. I work on new sounds and words with him every single day. There has been virtually no support network for us so I’ve had to learn a great deal in a short amount of time. I’ve found that the services offered through the health system here in Canada for apraxia have been really poor. Although expensive, private has definitely been the way to go for us. We’re getting the tax credit too.

That tax credit has been a great help for us. We probably would have gotten private therapy no matter what, but it is nice to have some help to do it. I am amazed that some people have not heard about it here. Our speech therapist in the health system told us about it and filled the form out for us, but in the brief conversations I have had with parents of other kids with Apraxia they have not heard about it.

There seems to be very little as far as support here in Canada though. We have found a few people to talk to that have gone through it, but it is not like there are support groups or even Canadian websites about it. While the Apraxia sites based out of the US can be helpful, although often depressing, they can only give you so much.

Hi. My son is 5 and off to kindergarten in September. We live in BC and like you as of September we are no longer eligible for speech therapy outside of the school system. I questioned my sons SLP a year or so back about whether or not Apraxia is considered a disability in Canada and whether or not I can get help. She told me that unless he has Autism he would likely not be considered, but now I have read your post. Did you have a hard time with getting funding? I would really love to be able to afford private speech therapy as I guessing he will rarely see the SLP from the school district.

You wrote this years ago, so I really hope you see this soon!!

Thanks Dominique

While I am not a speech therapist, apraxia does appear to qualify for the disability tax credit. The form clearly states under the speaking section:

Your patient is considered markedly restricted in speaking if, all or substantially all of the time (at least 90% of the time), he
or she is unable or takes an inordinate amount of time to speak so as to be understood by another person familiar with the
patient, in a quiet setting, even with appropriate therapy, medication, and devices.

That sure sounds like apraxia to me.

It was our speech therapist at the time that told us about the form and got us to bring it in for her to fill out. The funding came with the regular child care payment. I don’t think it paid for all of my daughters speech therapy but it sure helped. Ours ran out just this last December and talking with our speech therapist at the time we realized that our daughter did not qualify any longer, since she was now understood 80-85% of the time. It was a joy to hear that considering when she was diagnosed she was not understood 90% of the time and how far she has come.

Sorry I did not see this sooner. Been busy with lots of things and just did not drop by much lately. Good luck in your application. Hopefully your speech therapist will fill out the form for you.

Lee,
Thanks for the tip about the tax credit. I have never heard about it before you mentioned it. We are going to look into it and i will bring it up with his speech therapist as well. Does everyone qualify? How does it work?
Thanks,
Darlene

No problem. It is a Canadian Federal Government tax credit, so if you are in the States it will not help you much. There might be a similar program in the US, but I do not know. Take a look at the link I gave and print the form off. Your speech therapist can fill it the one section. If your child has Apraxia I imagine you will qualify, but I am sure it has to do with income level and a few other things. Only the Government knows all the criteria.

Hi Lee,

Thank you for sharing this info, and your story. I have a question for you. I can’t seem to get anyone to diagnose my daughter. She has been temporarily diagnose with global developmental delays. Even though her speech therapist is sure it is apraxia, and we have been treating it as such for the last 2 years, we still can’t get anyone to take the responsibility for her diagnosis. She is completely non verbal and has been working on learning to use an aug. com. device to communicate. (we are in the process of ordering one now with the help of our slp).

Did you see a ginetisist?

Sincerely,
Michele Kirby

Do you mean a geneticist? No we did not. The requirements up here only required an SLP to diagnose Apraxia so we decided to no pursue any genetic tests. The results would not change what we need to do.

It can be frustrating to get the diagnosis, and it sounds like you have had a particularly tough time of it. It is my understanding that only a neurologist can actually diagnose Apraxia because it is a neurological problem. We started looking into that, but since the Government requirements here only required an SLP for the disability tax credit and the wait list for a referral to a neurologist is over a year long we dropped it.

Good luck with the aug. com. device. Our daughter used one a couple times at with the SLP. I am sure you have probably looked into this already, but I will say it anyway. We went to the library and borrowed several baby sign language DVD’s and all watched them together. Nothing complicated, just simple signs to help us understand what our daughter needed. She picked up on it quickly and it cut down on some of the frustration that would pop up during the day for her and us. Even simple signs like eat and drink helped her tell us what she needs.

Stop by again and let me know how it goes and good luck.

Thank you for your posts! I stumbled upon your website during one of my nightly hunts for information about apraxia. I have a two year old who has been tentatively diagnosed with apraxia. As a two year old, SLPs are hesitant to make a firm diagnosis, but it is what we are working with at this point. We live in Ottawa so we attended a First Words screening to start the process. We did not want to wait more than a year for help so we have started private therapy. It is going well, but very slow. What has made a remarkable difference is signing. We borrowed videos from the library and our daughter just soaks them up. It is almost like she “gets” that language better than English, and she lights up when we sign. I’m interested if anyone knows of support groups in the NCR, either through CHEO or maybe Hilson Public School where there is a dedicated speech and language program. Lee, thank you for sharing your story and information. I am going to jump on that DTC and apply it to my growing SLP bills!

The Disability Tax Credit has been great for us! We put it into a separate bank account and then use it to pay for all the private speech therapy. Hopefully the government does not mess with it, without it I am not sure how we would have paid for all the private speech therapy my daughter has had and will still need.

When it comes tax time check and see if you can deduct (or use as medical expenses) your speech therapy bills. Every province is different, but here in Saskatchewan we can use them as medical expenses.

We had the same issues when we finally got into see an SLP. They hesitate to make a firm diagnosis at that age. It is frustrating but it doesn’t change what needs to be done. Having the diagnosis of Apraxia won’t change the treatment at all so if you can start with a good SLP now that is great.

My daughter has been presenting signs that are very similar to apraxia since she was a baby. I have been pushing for therapy and have been on the list since she was two and now at 3.5 years old she is supposed to start within a month or two. I have been working hard with her at home and have seem improvement but still worry for school. Obviously, a private therapist would be best to help her out but we can’t afford it right now. I was intrigue with the Canadian tax credit, I mentioned it to her therapist when I called her up and she said she can’t make the diagnostic for Apraxia, psycologist and neurologist can and that she couldn’t sign the form. Did you get the official diagnostic? I was under the impression that the speach therapist signed it for you. Thanks in advance. In Clarence-Rockland (Ontario)

Yes our speech therapist signed the form for us and according to this page the qualified practitioner for filling out the form for speaking is a Speech-language pathologist. If they won’t fill out the form for you I would start looking for a new one! We had a great SLP when our daughter was first diagnosed, but other SLP’s that we have talked to after have never heard of that form or that they could fill it out. Just a reality that not all SLP’s are created equal.

As far as an “official” diagnosis I think every province is different. In Saskatchewan an SLP can diagnose it even though it is a neurological disorder but I could be wrong about that as well. I don’t think you need an “official” diagnosis to get the tax credit! In fact getting an “official” diagnosis changes absolutely NOTHING the reality still is that your daughter will have lots of speech therapy ahead of her.

I am no tax lawyer and don’t work for Canada Revenue but I would encourage you to talk to them and keep talking and looking for an SLP that will fill out that form for you. That money can be very helpful to pay for speech therapy!

I live in Ontario (near Toronto) and my 3 1/2 yr old son was just officially diagnosed this week with Apraxia. Our SLP did all the testing for it but a Developmental Pediatrician had to make the official diagnosis in our Province. My son refuses to make a sound when around unfamiliar people so they used a two way mirror and observed him in the other room. I also showed them video of him speaking. My SLP gave me a list of words and mouth movements she needed him to do and I got him on video doing them. (As well as some other video of him speaking while playing and so on). I don’t think we would have a diagnosis without the video. I am going to look into the disability credit. I wondered if Apraxia would qualify. It’s worth a shot!

Hi Lee,

I came across this blog while looking for information about Apraxia in Canada. Thank you for all the information on the disability tax credit. I had no idea that Apraxia qualified. My daughter is 2.5 and was just diagnosed. It is so nice to know that my feelings are shared by other parents going through the same thing. My daughter talks a lot, but it understood barely at all. It is so hard to know that all she wants to say is up there in her little head, but just can’t get out of her mouth. She gets frustrated easily and it makes my heart ache for her. I wish you and your family well and hope your daughter continues to progress well. Feel free to email me with updates! Happy Holidays!

Thanks Courtney! Good luck in what is coming. My daughter is doing well. I just posted a little while ago that we are dropping to once a month speech therapy instead of once a week. Our speech therapist could not see a reason to keep coming once a week.

Our daughter is understood probably 85 to 90% of the time and she no longer qualifies for the tax credit. Good news really. It was helpful when we had it I will say that. She talks so much that we often tell her she is going to be a lawyer.

We are very proud of her and while we still have some work it will be a lot less than the last 3 or 4 years.

I wanted to say thank you for posting and sharing about Apraxia..I just found out yesterday that my daughter may have it but she’s too young to diagnose yet..I was wondering how old your daughter was when she was diagnosed?

My daughter was 3 when we got a diagnosis. She is now 7 and just recently we were told she is done her private speech therapy. She will continue seeing the school speech therapist to help iron out her S mainly.

My son Noah is 3 and 6 mos old. He has been attending school for the past year, 5 full days with Speech, P.T. and O.T. This past summer he has made huge strides. He understands well but cant get the words out… He is full of energy and as loving as can be. My wife and I cant wait for the day he responds with an ( I love you ) The good news is he is so affectionate we know he loves us. I know all children are diffrent, I guess what I am trying to ask is when did your daughter start talking to were you could have a conversation and just ask how her day at school was etc…

She was around 4 when she would start telling us about her day regularly. I remember that we would often ask when we picked her up from school but that often just ended up in frustration and her being angry. Eventually we learned to not even bother asking until after she chilled out after school, so supper time became very important to hear how her day was. It was just to much for her to try and express herself after a full day of speech practice and talking at school.

Leave a Reply

*