A Mum's Journey with Dyspraxia

Beautiful chaos….

What is “beautiful chaos”?

I see beautiful chaos as…

Smiling faces, laughter, music, dance, pretend fire engine sirens that turn into police cars, giggles, singing, toys, teddies, dolls, washing piles, dishes, endless half eaten carrots, cuddles, pretend horses galloping through the house that then turn into mermaids, bikes, trike’s, scooters and cars being driven by construction boys…

We are a blended family of 7, I have 2 kids and my partner has 3 kids…

Our family home is beautiful chaos, it is a party of 7, loving each other and enjoying living and learning together.  I learnt a while ago now that our little people will only be little for a short time and now is the time for us to enjoy just being with them.

Half way through the school holidays and I am about to start my week with our beautiful chaos and this is my reminder to all parents with a house full of beautiful chaos to “let it go” (yes we are big fans of Frozen too), and enjoy being a kid again.  Join the beautiful chaos and enjoy 🙂

In this house

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A Mum’s headache…

20140721_155937A Mum’s headache… schools!  School is such a difficult decision when you have a special child.  I made the choice to send Kaden to an Alternative School – http://www.tamariki.school.nz/ – which follows a special character around developing a child’s emotional strength and learning through play.  I am a huge advocate for schools that support a child’s development, not just their learning.  It is so important to give children the respect they deserve and I see all too often children in mainstream education children being treated like they are less worthy than the adult.  They are not heard and understood – they are just told to be and do, as all the others are.

Unfortunately for Kaden, he was becoming “lost” at school.  The self directed learning was not working for him, he needed more guidance and structure in his day.  I couldn’t bring myself to consider a mainstream school and found myself a bit lost.  As I said in my previous post we have such a massive team of professionals that have been amazing support and they gave me the information I needed to approach a private school that specialises in children with learning disabilities.  I felt concerned it would be out of reach for us so it was a confidence thing for me too – scared of that rejection and disappointment… Kaden was accepted! 

So over a month on and Kaden is getting the best education and therapies we can offer him.  He has specialised teachers, speech therapy and occupational therapy weekly and loves the small school with kids that have struggles just like him.  His education plan is personalised and already, even after such a short time, he has made massive progress!  Feeling super proud of him, without hesitation he changed schools and faced a bigger challenge than most adults would cope with.  He did it with pride and confidence and showed everyone just how awesome he is!

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Long awaited update…

It’s been so long! I had a comment posted on my last blog today asking how things were going for Kaden now…. And that’s when I realized it has been 15 months since my last blog! Time flies when you are having fun!

Where to start?  Well, managing behaviour was where I left off. At the time we were having problems with Kaden’s frustration levels. After lots of support and help we came to realize this was his clear backlash to having surgery (twice) and his anxiety levels around being unwell and having to potentially go back into hospital. It is amazing how a child’s approach to life changes drastically as soon as the adult in his world learns to completely understand his perception of the world.

My advice to all parents with special kids is to welcome the help offered by every service offered. Kaden has a massive team of great professionals that back my parenting style and support my approach to Kaden and guess what… it has worked! Lots of love, respect and guidance. Kaden is great, his communication is getting better all the time, his anxiety is being managed and he is happy. His behaviour management is now exactly like the other kids in our household and he is treated no different to his siblings. Amazing things happen when given the ability to express emotions and frustrations freely. He still has dyspraxia and will always have frustrations because of this but now that his parents and caregivers have the knowledge on how to support him through these frustrations, life is great for Kaden!

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Managing behaviour…

Part of dyspraxia is the “world” of frustration.  Frustration for not being able to physically do what they want to do, frustration for not being able to communicate what they want to say, frustration for not being able to keep up with others, frustration for just not being the same.

The thing you learn as a parent, once your first child hits about 18 months, is that frustration is the major cause of tantrums in our toddlers.  At this age our children minds are generally way ahead of their physical capabilities so they get frustrated about everything.  Some children can be having tantrum after tantrum just because they can’t do it themselves. 

Children with dyspraxia have to cope with frustration on a daily bases.  For Kaden this is obviously around his lack of communication.  Over the past 6 months Kaden’s frustration has increased and we have been struggling with his behaviour.  I say WE have been struggling, because now on reflection, I can see that his behaviour falls on us – his parents and caregivers.  It is not Kaden’s fault that he can’t communicate effectively; it is not Kaden’s fault that he is frustrated and angry with the world around him.  Can you blame him really?  Imagine having all the same thoughts and feelings as everyone around you but not being able to effectively communicate them.

 We have tried all the typical strategies, but nothing has worked for us.  If you have been following my blogs you would have worked out by now that my parenting style does not include timeouts and reward charts.  But I have been willing to try anything so I have been following all the advice given to me by the Ministry “experts”.   Fail, after fail, I finally decided to follow the only expert on Kaden… ME and all of Kaden’s everyday caregivers.  

 On reflection I have realised that I have been mourning for Kaden.  I can see him struggle and feel his pain.  And like all children, Kaden is not happy when I am not happy.  When I can teach myself to be happy and calm, it is so much easier to teach Kaden.  How can we teach a behaviour that we can even model?  Being calm and patient is a skill most parents have to learn but when you have a child with special needs, being calm and patient must be your parenting model.  You must be calm to make your child feel calm and you must be patient and give your child the time they need to do everyday tasks. 

 Life is slower, life is harder but life is pretty wonderful when you see the joy and happiness in your child’s face when they are just the same as everyone else and living life.

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All okay…

Kaden’s last surgery went well. Although it was a bit more complicated than the first, he bounced back amazingly. He has his follow up with both surgeon’s in a week.
The past few months I have been struggling… I feel so sad for Kaden and completely helpless as his Mother. I can’t fix this for him. I can help support him to communicate to others, but that’s it, there is no quick fix here.
For those of you that are parents, I am sure you can relate, we want to protect

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our children and hope they will be the best they can be… I feel an overwhelming sadness when I think about Kaden not being happy in 5, 10, 20yrs time…
But then I stop and I look at my wee buddy, (who 90% of the time has a cheeky wee grin) and realise actually he is already happy, maybe we are all already doing the right things? Maybe he will be okay?

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Complications…

Sad news…  Kaden has complications due to his first surgery!  To explain in basic terms, we have two small salivary glands in the front of our mouth.  After moving the “tubes” to drain at the back of Kaden’s mouth in the first surgery, these glands are suppose to “work out” how to drain themselves naturally.  In 5% of cases, one or both of the glands can’t work it out and get blocked, causing a ranula (cyst) under the tongue.  Kaden happens to be in that 5%…

So he now has a big lump (cyst) under his tongue and needs to have the gland removed in surgery on Thursday.  This surgery is more serious than the first, there is a risk that nerves can be damaged, which would mean Kaden will lose feeling in one side of his tongue.  Recovery is longer and he will be in more pain.

Kaden is feeling very overwhelmed and anxious about having to go back into hospital.  I think it is actually worse, being he knows what to expect.  He is feeling very angry and I am at a bit of a loss as to how I should reassure him.  Especially when I am feeling just as overwhelmed and anxious!

So out comes all the distraction tactics that I can think of!  Keeping him (and myself) busy is all I can do and hope that Thursday comes and goes fast and finally Kaden can get better…

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Feeling worried…

Kaden can’t talk… this seems like a strange thing to start with, I know.  But for some reason it has just hit me, Kaden is nearly 7 years old and he can’t talk.  I went through the “mourning” stage a few years ago, the stage when you “mourn” for the child you thought you were going to have.  At least I thought I had.  When I think back, I actually think I was just going through the motions and organizing the help that he needed at the time.

I feel like I am now truly mourning for him.  It is now very obvious to outsiders looking in that there is something wrong with him.  I am now worried about his future more than I ever have been before.  What’s going to happen to him when he goes to high school?  What is he going to do as a job?  Will he ever get married and have children of his own?  Will he ever be able to say, “Hi, my name is Kaden”…

He has had his operation.  This went really well, he was even discharged the same day.  So far we haven’t seem amazing results but the doctor did say it will be a few weeks before we do so fingers crossed.  The worst part as a parent was when they put him to sleep.  I had to hold him and he panicked, I could see the fear in his eyes, it must have been so unbelievably scary for him.

Kaden has the best grin, he is very loving and caring.  He is a lot of fun and has so much to offer others.  Thankfully at this stage of his life most of the people around him are accepting and understanding but as he gets older, life is only going to get harder for him.  I am completely lost at the moment with what more I can do to help him.  I guess a good start would be to stop worrying about him and get on with life….

 

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Surgery it is…

Kaden finally had an assessment last month with an ENT specialist about his drooling.  The specialist (Chris Thompson) has recommended Kaden have a Submandibular duct relocation.  Basically that means they will move the tubes that bring the saliva to the front of the mouth, to the back.  He will produce the same amount of saliva but it will pool at the back of the mouth not the front.  With the hopes he will find it easier to swallow.

The specialist gave me great confidence that this is the best option for Kaden.  He even spoke to Kaden directly and ask him what he thought.  Kaden doesn’t want to drool anymore and although he can’t completely understand what it means to have surgery, I know he can get through this.  So I am going to take off my over protective Mum hat and support him through this!  The surgery is booked for 4th Dec, he will be in hospital overnight and will have up to a week off school.

I will keep you posted on this one, it is scary and exciting for us all!

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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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