Acceptance

Jeremy attended a kindergarten birthday party when he was almost 4 years old. I went over to check how he was going and another parent told me that he was impressed because Jeremy had tried to spell out his name (when asked what his name was) because he knew that the parent wouldn’t be able to understand him. Unfortunately, Jeremy couldn’t pronounce many of the individual consonant sounds either, especially the ‘J’ so he was still unable to be understood.

Jeremy had never babbled as a baby and rarely cried like other babies, instead he grunted and grizzled and later pointed. He picked up a few words early on but then stopped using them. When Jeremy was 2 years old, a ‘maternal and child health’ nurse suggested that Jeremy’s difficulty communicating could be responsible for some sleep and behavioural concerns I had about him.

The nurse put me in touch with a  publicly funded speech pathology service in the area, which was much less expensive than private services. I referred to Jeremy’s new speech pathologist (K) as the ‘talking doctor’ to Jeremy and explained that she would help to teach him to speak and Jeremy was very interested and excited about each visit. He also made dramatic improvements after each visit.

I recall generally that K mentioned that I should speak in less complicated language such as “Jeremy up?” instead of “Would you like me to pick you up Jeremy?” I think also Jeremy wanted to learn how to talk and it was almost like he was made aware that he could talk just by having a ‘talking doctor’.

Unfortunately, when Jeremy finally started to use speech he only spoke in vowels because he couldn’t pronounce consonants, which meant it was extremely difficult to understand him and added an extra element to the speech therapy. In addition to his speech diagnosis of expressive language delay with idiosyncratic error processing difficulties, Jeremy received a diagnosis of Autism Spectrum Disorder (autism) at 3 years of age. Given that Jeremy now had a diagnosis of autism he was no longer eligible to see that speech pathologist, so we switched to M.

One by one, M helped Jeremy pronounce each consonant sound. It involved manipulation of the mouth and tongue and practice saying the words alone and in sentences. The words were on worksheets with a picture matching each word. It took a month or more for Jeremy to learn how to say each consonant, until we got to the ‘Ch’ and ‘J’ sounds.

M tried so many strategies to isolate the ‘Ch’ sound but after a years worth of trying Jeremy still couldn’t pronounce it (I think the way he tries to pronounce it is called lateralization). His tongue just refuses to move in the right way to produce the sound. It’s incredibly difficult to learn how to make this sound when it doesn’t come naturally.

Jeremy always found the speech exercises difficult and disliked them as a result of his lack of success with the ‘Ch’ and ‘J’ sounds. I tried many things to try to improve his inclination to practice. I used reward systems, constructed certificates and colourful sheets with words and pictures that would interest him more than the boring ‘black and white’ sheets. I also purchased various speech pathology applications on the iPad (Articulation Station by LittleBeeSpeech was particularly good). Often there would be improvements for a while but eventually the novelty would wear off.

Jeremy would cry from time-to-time when told it was time to practice his sounds and he would complain of being tired and pretend to yawn. He would wriggle and fidget endlessly and avoid eye contact (something he usually didn’t do). He practically climbed all over his chair during the sessions.

M and I praised Jeremy regularly, acknowledged how he felt, explained what we are doing and why and how long it would take. We also gave him fiddle toys (sensory) to squeeze and stretch but Jeremy still had difficulty coping with the sessions. I would have preferred to have a longer appointment but with breaks in between but M only did 30 minute sessions. If you do the math her fee was 3 dollars per minute…tick…tick…tick.

I always sat in on the speech pathology appointments. I found myself willing Jeremy to make the right tongue and lip movements and often copied what M was doing so that I could be familiar with it too. If someone was watching us through our lounge room window, they would probably think we were in training to compete in the mouth movement Olympics, pursing and pouting our lips and curling our tongues in deep concentration.

Jeremy and I were both at our wits’ end with just the mention of the sound ‘Ch’. It had become traumatic for both of us. I got frustrated because I just wanted him to practice, I didn’t care if it wasn’t perfect but Jeremy couldn’t cope with ‘getting it wrong’ and had developed a strong aversion (probably anxiety-related) to ‘sounds practice’.

Jeremy had such success with M in the past with other consonants that I although I had considered it, I didn’t want to change speech pathologists for a long time. I kept thinking “We are nearly there, just one more sound” It was like being near the end of the finish line in a marathon in a bad dream, you can see the finish line but you seem to be running on the spot.

I asked M one day if there were languages that exist where you didn’t have to pronounce the ‘Ch’ sound and would that mean that Jeremy would no longer need speech pathology. She said yes. Damn the English language for needing a ‘Ch’ sound!

I explained our predicament to Jeremy’s paediatrician and she recommended another speech pathologist, so I have put Jeremy on a waiting list for this new therapist. However, Jeremy is 7 years old now and after 5 years of speech therapy I am worn out, Jeremy is worn out and we are glad for the break.

I previously assumed that Jeremy would be able to articulate all sounds accurately with ongoing speech therapy but now I’m not convinced. I had recently asked M if it was realistic to expect that Jeremy would eventually be able to pronounce ‘Ch’ with therapy and she seemed to think he should. M said that “only those with severe apraxia of speech” may always have difficulties pronouncing sounds even with speech therapy.

However, with a little investigation of my own it seemed that even though treatment efficacy of speech disorders has generally been shown to be effective this does not mean that you can expect all children to show improved intelligibility or communication functioning with treatment. In addition, all the articles that I have briefly skimmed through tend to stress ‘improvements’ not ‘gaining speech with no obvious phonological differences to their typically developing peers’. I feel that M raised my hopes a little too high.

I have recently been doing a lot of reading about autism from blogs by disability activists and I have learnt a lot from them. In the case of Jeremy’s speech, I am leaning toward a healthy dose of ‘acceptance’. To really understand what is meant by ‘acceptance’ with regard to autism, I encourage you to read pages 10-13 of the first issue of the ‘Parenting Autistic Children with Love and Acceptance’ magazine.

I brainstormed the pros and cons of speech therapy and wrote them on a piece of paper (roughly, within a short time, as the thoughts came to me) with the intention of discussing it with Jeremy. Jeremy is a very smart boy and I think that exposing him to these concepts is appropriate for his level of understanding (which is high).

However, I didn’t put one of my fears on the list (that I didn’t want to expose him to) and that is the potential for workplace discrimination in the future. My fear is that he may be overlooked for promotion or employment in the future. It happens.

Pros and cons of continued speech therapy for Jeremy

N.B. You’ll notice that I put ‘Discrimination and Bullying’ in the ‘Cons’ column and you may think it doesn’t belong there. I actually put that there subconsciously and later thought there is no way I could justify putting that in the ‘Pros’ column anyway.

I asked Jeremy to “come over and have a look at something important that he has a ‘say in’”. Then, when he was next to me, I pointed to the sheet of paper and said “This is about speech therapy. How do you feel about that?” His bottom lip dropped and my bottom lip dropped in reply and I said “You feel sad” and gave him a hug.

I said “I have written a list of all the reasons supporting speech therapy and all the reasons against speech therapy” and I pointed out that there were more reasons in the ’don’t do’ or ‘Cons’ speech therapy column (to let him know that I could see it was a problem for us). We read through the columns and I asked Jeremy what he thought we should do. He said “I don’t know”. I said “How about we try a new speech pathologist after a long break and if you still feel the same after a few sessions we can stop it? We can also help children who are different including those who speak differently by defending them if they get teased” (refer to earlier post on bullying). Jeremy was satisfied with my suggestion and didn’t seem to want to discuss it any further (he appeared to lose interest).

Jeremy is a privileged child and I need to remind myself of that, if he has an obvious vulnerability or vulnerabilities it can only enhance his empathy for others. One of the greatest gifts autism has given me is the ability to empathise with other people with vulnerabilities (who are likely to be discriminated against). I am less likely to underestimate someone’s competence or what they have to offer me as an equal. I am a true believer that vulnerabilities lead to strengths elsewhere by virtue of the need to cope and our ability to adapt (refer to an earlier post here) and at the very least vulnerabilities do not negate any strengths that a person already has independent of those vulnerabilities.

With the wide range of less obvious characteristics that can be discriminated against (refer here) it is unrealistic to avoid all of them. It is a much more honourable goal to promote acceptance and celebrate diversity than it is to strive for an unrealistic goal of ‘normalizing’ everything, which leads to placing the blame on the person for their differences. Jeremy’s speech is now normal for Jeremy.

I suspect that we won’t be seeing the new speech pathologist for long but it is always worth getting a second opinion. I will definitely be asking for a detailed and completely open opinion about all the likely outcomes of speech therapy for children with a similar profile and history to Jeremy. However, I believe that I already know the answer for Jeremy and I know that I have already accepted, without anxiety, that Jeremy will always have a speech impediment and he will not be alone and it is not a problem. In fact, it is a relief to put an end to what has clearly become a torturous experience for both Jeremy and I.

 

 

Advertisements