A Mum's Journey with Dyspraxia

Drooling…

When you say the word drooling, most of you would think “baby”… but with those of us with apraxic/dyspraxic children drooling is a massive word that is part of our day to day life.

I remember when Kaden was a baby, he dribbled more than the “average” baby, we always thought he was just teething, all the time!  As he got older, although it seemed to improve slightly, unfortunately he continued to drool excessively.  I had always hoped it would get better with time.  Kept telling myself, once he gained control over the muscles in his mouth he would get better… he is now 6 1/2yrs and we are still waiting. 

It makes me really sad for him, kids look at him funny, like he is “special” or dirty.  He has even experienced adults looking at him strangely or pointing out to me that he is “dribbling” (like I didn’t notice)!  He must hate it, his chin and neck sometimes gets red and looks sore, his top gets all wet and he must feel “different” for yet another reason (as if not being able to talk wasn’t enough to deal with).

Things we have tired… bibs, bibs and more bibs!  But eventually they get to an age where they don’t want to wear a bib so we moved on to sports head bands but around his neck.  They don’t look too bad and are very absorbent so generally one will last all day.  Downside is they aren’t cheap and you need at least 4 so you can rotate them through the washing. And of course he is wearing something “extra” that other kids don’t.

Medically speaking the only thing we have tired is Scopoderm Patches.  They are a “travel sickness” patch with the main side effect, “dry mouth”.  They are a small patch that you stick to the skin behind your ear.  Kaden hated it!  His skin reacted to the patch and he was consistently playing with it.  And with the dose we tried, it didn’t seem to help enough anyway.  http://www.netdoctor.co.uk/digestive-health/medicines/scopoderm-tts.html

A while ago I discussed the drooling with Kaden’s pediatrician, he had suggested trying the Scopoderm but other than that the next step would be to think about surgery.  This is something I have been seriously considering as Kaden gets older.  But is a massive decision.  I don’t know much about what is involved in the surgery yet but have asked his pediatrician to refer Kaden to an ENT (Ear Nose Throat) specialist so we can find out more details on what is involved.  I have found one website that details the different surgeries for drooling, which has at least given us ideas on what to ask and what we don’t want.  http://emedicine.medscape.com/article/879271-overview

I will keep updating about this one, it is very scary to think of Kaden having surgery but if it is the only answer then what else can we do.  I don’t want him to have anything else to deal with in the “social” word.  He is going to battle enough with the lack of speech, if we can do something to help any part of his disability, shouldn’t we do it?

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Coping with change…

Just about everything I have read about dyspraxia/apraxia there is a intensive section on routines, changes and anxiety. It is very common for children to NEED routines to help them process and feel secure in their life. As a “typical” parent with special needs, I followed this by the book for many years. People use to think I was nuts, always “allowing” Kaden’s routine to control our life. I felt it was what I needed to do, to help Kaden grow and progress. As Kaden got older, we have started to be more flexible with his routine. And to our surprise he coped fine. Then recently Kaden has had to cope with the separation of his Dad and I. We had a massive fear that this would be hugely difficult for Kaden to cope with, that his lack of understanding and change in home life would create anxiety and behavioral problems. Kaden is fine…. Yes, we had transitional period but less than 6 months on and Kaden has adapted to his new life without anxiety or behavioral problems. So to conclude… Wow do we under estimate our little people! There is so much information out there on development and special needs… Remember no matter how much research they have done, it is still not your little person. If you are a strong, loving parent, generally you can support your little person through anything!

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