Apraxia: Banging My Head Against A Brick Wall

The title of this post is just how I have been feeling about this cursed Apraxia (Dispraxia) that as been plaguing my little boy, Buster (4)

It really hit home when my oldest daughter Flash (9) cam to me in tears…finally admitting that the reason for her distress was….

‘…..I’m just really worried about my brother…he can’t talk yet….”

Buster has been seeing a speech therapist and in the beginning I was feeling very hopeful that his speech would make big improvements this year. However, I can only get to see the speech therapist about once each month. On one of these scheduled appointments, Buster was very sick with the flu (he missed a week of preschool). I called the therapist and was informed that the next appointment he could get was 2 months later!!

Busters Preschool teacher also called me this week. She wanted to say that she was very concerned that Buster’s speech was not improving . She wanted to know if there was anything she could do to help him. She is such a lovely teacher J. She asked if she could speak to Busters Speech Therapist to get some ideas on how to best support Buster in the class room (The therapist was supposed to call the teacher at the beginning of the school year, but that has never happened).

The most frustrating part for me is the speech therapist. Even though I have been to see an Ear Nose and Throat Specialist to rule out any structural abnormalities, she has told the preschool teacher that she thinks that buster has an abnormality in his palette *!*. She is still very determined to teach buster sign language and have him use his iPod…..she even told the preschool teacher that it was a shame she didn’t see Buster more regularly….(Hello....you make the appointments!!)

I am just simply perplexed by these strategies. How on earth will sign language help him be understood at school when neither the other children or the teachers use sign language?? We have also found that walking around with an iPod is just not really practical in a preschool situation.

I feel like I’m banging by head on a brick wall because I just want the speech therapist to help him speak!!

I realise that treating apraxia is a long, slow process. Buster gets so frustrated with people (including me) constantly correcting him…He actually does try his absolute hardest to repeat the word the way it is supposed to sound….but he just can’t seem to do it. Listening to him struggle just breaks my heart. It seems that the speech therapist has given up on the possibility that he will ever be able to speak fluently, and is trying to provide other options for communication….but I’m not going to give up on my little boy!

Yesterday I called the speech pathologist that my daughter saw. I was prepared  to literally beg her to see my son. Unfortunately she no longer sees clients…but she did give me a recommendation to a speech therapist who trained under her and specializes in Apraxia therapy.

Although this new speech therapist was ‘full’,  thanks to this recommendation, I was able to get an appointment for an assessment with this new therapist…..Suddenly I have a reason to feel hopeful again!!

I am willing and determined to practice with Buster. Buster’s preschool teacher is also prepared and enthusiastic to support him at preschool with the same strategies. His support system is in place and is raring to go! Now, I have my fingers crossed (and everything else!) that this specialist in Apraxia can give us some techniques and a structured and effective plan of therapy to follow. ..

….I’m not going to give up.

I'm sharing this post over at Mumma Grace for Flog Yo Blog Friday.... There are some great posts up today!!

Buster’s ENT Specialist Appointment

You may have guessed by now that I am a bit of a sporting tragic J. So, you can imagine that I was a little irritated at having to miss the school swimming carnival (where both my daughters were swimming)….Just so I could do my least favorite parenting job…no, not scrubbing mold off the shower, even worse than that!....taking my son to another pointless medical appointment!

I have written earlier, here, how Buster's speech therapist is convinced that Buster has a structural abnormality in his nose or palette which is the cause of his speech difficulties. Given our family history of apraxia, the fact he sounds much like my daughter who was also diagnosed with apraxia and the absence of any evidence for a structural abnormality, I very much doubted there was a structural problem. However, I was happy to see the specialist to rule a structural abnormality out. We have been waiting for our appointment since November last year!

In a way…it would be sort of good news if there was a structural problem. Then perhaps it could be ‘fixed’ with a operation or procedure!! Man, it would sure be easier for me  than the hours and hours of painstaking and frustrating (for Buster and me) speech therapy.

The Ear Nose and Throat (ENT) specialist listened to Buster speak, then examined his nose, throat and ears. He said that he couldn’t find anything physically wrong with his mouth or palette. He said that his palette was capable of a full range of movements to produce the correct sounds (weather or not he makes the correct moment corresponding to a certain sound or not is not a structural problem).

The specialist also noted Busters gigantic tonsils…but said lots of kids have big tonsils and they can talk well!! He said unless there was problems with constant infection, that he had no reason to remove them! I was a little relieved about this because I had a feeling that his ‘super’ tonsils would need to be removed.

So, for the ENT specialist I am thankful! I am really thankful that Buster does not need to undergo a scary (for him and me) and painful operation! I am thankful l that I now have professional opinion to state that buster does not have a structural abnormality and that his best hope for fluent speech is…..Speech Therapy!! (notice I have said that with a sense of irony!)

 I’m not that thankful though, for the cost of this assessment and it feels a little like a waste of time…..

 Anyway, I am thankful that structural problems have been ruled out and I am now hoping that the speech therapist will commit 100% to speech therapy that will help Buster‘s speech be more readily understood. 

For this Thankful Thursday I'm linking up with Kate at Kate Says Stuff  (who has just the BEST post today :)

Go over and see what others are thankful for!

Daddy’s Big Fat Nose: Speech Therapy Update

“….Your Son’s speech is not adequate for preschool….”

That is the statement Busters’ speech therapist uttered about 2 or 3 times at today’s speech therapy session. Each time it felt to me like a physical blow.....(My 4 year old son, Buster is currently battling  apraxia).

I attended speech therapy this week in a very positive frame of mind because Buster has been doing so well at preschool. His preschool teacher freely agrees that he has a speech problem. But she also says that he mostly makes himself understood and has no trouble relating to the other children in the class…in fact, I have witnessed his enthusiastic, carefree and friendly interaction with the other children myself. He is a very cheeky, charismatic and outgoing child and he has gotten very adept at ‘charades’.

However, Busters speech therapist still seems to be intent upon sucking all hope away. She seems to focus on all the things that he can’t say, instead of the progress that he is making and  the things that he can say (and couldn’t say a few months ago).

She seems to be especially worried about how he will handle kindergarten next year, his first year of formal schooling. I, on the other hand, and somewhat naively,  was hoping that all the speech therapy sessions and home practice would cause a remarkable improvement in Busters speech so that he could fully participate in school!!

Her attitude, weather it is pessimistic or realistic, just makes me want to prove her wrong…actually, part way through the session I was truly thinking to my self #headdesk  #headdesk. (perhaps I need to step away from twitter…nahhh). Toady I left the session feeling very despondent…but I have a deep resolve to help Buster’s speech reach its potential. I truly believe that his speech will improve so that he can be understood.

These past couple of weeks, Buster and I have been working on the sounds found at the end of words. For some reason he seems to leave the end sounds off most of his words so that many words sound the same. For example, he will say “four” instead of  “fork” or “no” instead of  “nose”. We have been using cards that try and emphasize that the meaning of words changes with the end sound. These are some examples:

This video shows how I have been using them to help Buster recognize the sounds at he ends of words.

For the next couple of weeks, our speech therapist wants us to keep working on these end sounds. Our speech therapist has also decided to take a more functional approach to Busters speech therapy. She wants me to come up with about 50-100 words that Buster uses consistently wrong. We will then go through each of these words and teach him how to say each, individual word. I now it will be a long, drawn-out process, but for the first time, I can see this new strategy really having the potential to make a difference to Busters everyday speech.

Even though I leave each therapy session feeling ‘down in the dumps’ I am not going to give up. I am determined to do everything I can to get Busters speech ‘adequate for kindergarten’ next year. Buster has made an enormous improvement in his speech this year.  The speech therapist did actually say that today! I know that this improvement  is mostly due to his speech therapist, so for that, I am grateful to her.  The improvement Buster has made in his speech, and the way is he doing so well at preschool, is  really giving me hope for the future!…despite what his speech therapist may think!

I'm linking this post up with Jess at Diary of a SAHM for #IBOT (I blog on Tuesdays) Come over to Jess's (The Rock Star's) super cool blog and see what others are blogging about today :)

Speech Therapist in Training!

By the title of this post, you may think that I am referring to myself as the speech therapist in training. I am, however, not referring to myself, but to my 8 year old daughter Flash.

You can see her here, helping her little brother, Buster (4)  who has childhood apraxia of speech or dispraxia. This is a speech delay that I have described here.

There is actually some irony in what you can see in thist video. You see, Flash was also diagnosed with apraxia/dispraxia, when she was 3 years old (see here and here). After early intervention and exhaustive practice at home, she is now able to speak quite well, even though I was warned that she may never speak clearly.

It is my daughter, that gives me the best hope that Buster will too, win this battle against apraxia.

Flash is in a unique position as she seems to remember how it felt to have dispraxia. She is able to really understand and empathize with the difficulties Buster is having with is speech.  She also seems to get the best out of him and at the moment, Buster prefers to do his practice with his big sister.

I can’t help but get a little emotional when I watch Flash and Buster practicing their speech. The level of caring and patience Flash demonstrates for her little brother is enough to melt any mother’s heart…….

……. I am just so proud of them both…….

The device you see them using in the video is a 'smart chute’ from Smart kids. It’s purpose is to help kids develop literacy and numeracy, but I thought that it could be adapted to help Buster with his sounds and putting them together to make words.

He, like many other preschoolers just loves the concept of ‘posting’ the card. That action of posting, seems to be reward enough for having attempted to say the correct sound. You can see how much he enjoys using it in the video.

One of my major goals for this year is to ensure that I practice busters speech so that he can beat this apraxia curse….. so he can find, and share his beautiful voice with the world. I have been coming up with ways to keep his speech practice fun and exciting.

I was motivated to set out my goals in 2012 by my participation in the me and you link-up at The Mother Experiment. The  reins have now been handed over to A Parenting Life.

 The me and you, making it matter meme is a terrific way to start the process of figuring out your goals and receive support and encouragement from the wonderful community there.

You can find the 'me and YOU, making IT matter meme here:

I am also linking up with Jess, at Diary of a SAHM for #IBOT. Pop over to her inspirational blog to see what others have posted today!

Apraxia: Making Speech Therapy Fun

My 4 year old son Buster has childhood apraxia of speech or ‘Dispraxia. Oral apraxia is a speech delay where there seems to be a difficulty in getting the correct signal from the brain to the mouth. I’ve written about our family history with apraxia here.

Buster has seen a speech therapist 3 times now and we have finally got past the diagnosis stage to the speech therapy stage. This is the beginning of a very long road......

Buster's speech therapist has been trying to teach him to say the ‘p’, ‘b’ and ‘m’ sounds. These sounds are made at he front of the mouth and require him to move his lips…something he doesn’t seem to be able to do very well or with accuracy. He makes most of his sounds with the back of his mouth (if you say the sounds ‘c’ and ‘g’ you will see what I mean).

It’s amazing how complex speech really is when you break it down to it’s component parts. Most of us, including me, just take it for granted and picked the sounds up when we were babies. However, Buster has to be taught each individual sound. It’s a little like learning to read, I didn’t realize how complicated it was until I tried to teach someone to do it!

Buster only has a speech therapy session once every 2 weeks, so it is vital that we practice his speech at home. He was given this book to complete by the speech therapist.

You can just imagine how utterly boring this is to an active and exuberant 4 year old!!

He soon refused point-black to have anything to do with repeating the same sound (that is difficult for him to say) 12 times over, be constantly corrected and reminded that he can’t say it, only to be rewarded with a tick!

I thought that maybe if I try and make his speech practice more exciting, he will cooperate and practice his sounds. So, to make speech therapy fun for Buster I made him a wall chart with some of the materials from the girls craft box (hence, the pink ribbon…) (you can see that I’m definitely not a craft blogger!!).

I laminated some cards that show him the correct sounds to make for visual cues. I also laminated some Ben10 pictures I found on a google image search to be used as a reward. I attached Velcro spots to the cards and Ben10 pictures.

I find the chart to be much more tactile and stimulating than the black & white photocopied pages of the book. So-far he really seems to enjoy using the chart. He gets to place the cards on the chart when he says the sounds correctly (or at least gives it a really good try). He really enjoys choosing a Ben10 sticker to put on his chart as a reward. He even spent some time today carrying his chart around with him and practicing his sounds on his own

I am determined to do whatever I can to help my little man communicate with the world. He really does have a sweet little personality that I really want the world to see. I don’t want the world to judge, label and categorize his personality and intelligence by the way his speech sounds.

Buster starts preschool this year……I am very, very worried for him and I am a little reluctant to let him go…I’ll keep you posted.....

I listed Busters speech practice as one of my goals for 2012 in this post for me and you with the Mother Experiment. I'm linking up with her me and you link to share the progress of my goals.

I am also linking up for the first time with a lovely blog I discovered, Austism Wonderland who is developing a wonderful community where everyday wonderful moments are celebrated with her 'the little things are a big deal link-up

and because it's Tuesday. I'm linking up with the lovely Jess from Diary of a SAHM for #IBOT

Enough With The Testing…Some Speech Therapy Now Please!

Well, after first seeking speech therapy for my 4 year old son Buster at the beginning of this year, he has just today, had his second appointment. As I sit writing this, many  words come to mind to describe how I feel…. frustrated, deflated, helpless, worried, impatient….

Was hoping the dark clouds would be blowing away soon

Today Buster was subjected to a further 2 hours of testing…actually the same test three times over, to determine if he made the same errors each time!!!  Because Buster makes ‘unusual errors’ the therapist seems convinced that he has a structural abnormality in his mouth or nose. About 30min of sticking torches and mirrors up there didn’t reveal anything unusual…except for his gigantic tonsils…..

I tried to respectfully point out our family history of dispraxia, I tried to tell her that my older daughter also had a similar way of speaking, often making the same errors. At the end of the session she says to  me

“…you know what…I think he may be dispraxic……”

In my head, all I could think was  "....well, Doh!! Halleluiah!.....”

Still, she seems determined, almost in a belligerent way, that Buster has a structural issue. I am happy to see a ENT specialist. I have a referral and an appointment (our GP, who has seen my daughters battles, also doubts there is a structural problem). However, the earliest appointment I can get is next March…NEXT MARCH??? Although she didn’t say it outright, I am concerned she will not give Buster any meaningful speech therapy until I have the structural abnormalities issue ruled out.

I just feel so sad for my poor little boy. I can see him trying so hard to be understood, but his mouth just doesn’t seem to do what he wants it to….he was given another appointment in exactly 1 months time…for further testing...........(FFS!)

One thing that I have learned through my experiences with Buster and my daughters speech difficulties is tolerance and compassion. Truly, unless you walk in somebody else’s shoes you really have no idea what the parent and child is actually dealing with or going through.

Just yesterday a mother bought her daughter to Busters class, from another class, for a make-up lesson. The little girl didn’t receive Christmas cards from the other children and had an absolute meltdown. The poor mother was also dealing with 2 other children. The little girl was fighting and screaming not to get in the car, the other mothers drove away as quickly as they could. Although I was worried that I would embarrass her or make her feel awkward or uncomfortable,  I decided to go an see if she needed any help.

What she really needed it seems, was to tell someone that her daughter had been diagnosed with Aspergers  and a Sensory Processing Disorder (SPD).  We ended up speaking and connecting for 10 minutes and I think we both left the preschool feeling much happier and more contented.

I also feel this way when I connect with people online that are going through similar things with dispraxia. Sometimes it’s just nice to know that others have been through what you are going through and can understand that it can be so hard!

I fully realise that there are people dealing with much bigger problems than dispraxia. Although my son hasn’t been diagnosed with autism many of the #YouMightBeAnAutismParentIf hash tag comments on twitter ring true for me and I feel like I am part of a wider community of people that are caring for children with special needs.

From my personal experiences and everything I have learned online,  I have made a pact with myself not to judge, or make assumptions of  parents or children when I catch a glimpse of them in the supermarket, playground or car park. If the situation warrants it, I will do my best to offer assistance and  empathy (even if is turned down) to others instead of  just walking away. By doing this I hope that I can become a better parent for my children and become a better person myself.

Buster’s Speech Assessment

Well, today was Busters assessment by the Speech Pathologist, to decide on his treatment plan and the way forward. I guess I’d have to say the results of the assessment were mostly good. However, it doesn’t really make me feel happy, In fact I think I need to go and have lots some chocolate!

I suppose it comes as no surprise that Buster has been categorised as having a severe speech dysfunction. Dispraxia (childhood apraxia of speech) is suspected but more tests will be required to determined this for sure, (actually I don’t really care what name they call it, I just want them to help him!). Also, not surprisingly (to me anyway), there was no sign of intellectual or cognitive delay, nor was there any evidence of Autism. Actually, I have been stopped several times by complete well meaning strangers and been asked If Buster had autism. This really annoys me, not because I’m worried that they think he has autism, it’s just none of their business!

The speech pathologist and her assistant were wonderful with Buster. They made him feel at ease, they didn’t pressure him or make him feel stupid or inadequate. Buster himself was amazing! He concentrated completely for 45 minutes. He had the speechies wound around his little finger with theatrical displays and pantomimes to illustrate the difficult (for him) words they were trying to get him to say. If it were possible for me to love Buster more than I did before, than I would love him even more after that session, I was so proud of him.

They recommend I get a referral to a ENT specialist just to rule out any structural abnormalities. They will also call Busters teachers at his pre-preschool and explain to them his speech difficulties. I hope this will help the teachers understand the reasons behind his behavior a little better.  The best part though, was that near the end of the session the speechies were able to get him to say words and sounds that he has never said before. The speechies have said this is a very promising development as it means that speech therapy should be able to work well for Buster.

Although I already knew, it was not easy to be told that your child has a serious speech problem. It seems that both he and my daughter Flash (you can read her dispraxia story here) need to be taught the elements of speech that come naturally to most children. I guess it could have been worse. I distinctly remember being told that flash may never speak fluently. So I guess today’s assessment was an improvement upon that.

Buster has a follow-up appointment for more testing on December 15. I am feeling impatient that they just can’t start giving him speech therapy NOW, especially after we have waited such a long time for him to be assessed. However I am trying to focus on the positives. I am really hoping that this is the first step in the journey of learning correct speech. I just so very dearly want for him to be understood and have all that frustration taken from him….my beautiful little boy….