A Mum's Journey with Dyspraxia

Relax….

Someone mentioned my blog today and I realised how long it had been since my last one.  I realised that I hadn’t thought about blogging because life had been relaxed and fun over the Christmas holiday’s.  For the first time since Kaden was born, actually since I started trying to conceive Kaden, I had relaxed.

Over this Christmas break Kaden has had no actual therapy.  And not surprisingly he has been developing fine, actually great.  His confidence, speech and independence has continued to increase and I think he has enjoyed the break as much as I have.

Most parents, (Mother’s), I know are always on the go, busy with kids, washing, cooking… life.  And when you have a child with special needs, life just gets even more complicated.  Therapy, therapy and more therapy… plus the joys of normal life.  I think as a parent of a special needs child you forget how to just be you.  You become so involved in living for them, worrying for them, fighting for them, being their voice, that you forget who you are.

This summer I have found me.  I am a Mother, a wife and a friend.  I will always give my children first priority and will always work hard on Kaden’s therapy and everything else around helping him develop.

But my New Years resolution is to start being me and to start finding the balance between life with a special needs child and my life as a person.

All parents, especially those with special needs, please be kind to yourself and don’t lose who you are.  Be You Always.

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Frustration…

Frustration, I guess that is an obvious word that just “goes” with Oral Dyspraxia or Apraxia… everyone always asks, “does he get frustrated?”.  Up until recently we have happily reply, “No not often”.  Unfortunately for us recently Kaden’s frustration has gone from bearable to uncontrollable.

And of course being he can’t tell us, we are just guessing it is frustration.  He has moved into a zone of having completely no control over his body or emotions when he gets angry.  Violent outbursts with screaming and crying!  Now developmentally that could be his age, being over tired or just trying to assert his independence.  But I can’t help but to think he is angry… but at what?

He can’t talk like all the other kids, there’s a good one.  He also can’t physically do things like other kids.  And we live in Christchurch, so are all dealing with Earthquakes on a regular basis.

So is it anger or frustration?  Or both?

And I guess the big question is, how do we deal with it?

Now that is the hard one, we actually have no idea!  We don’t believe in rewarding the good and punishing the bad.  For many reasons that I won’t go into now (but here is a good article if you are interested) –

http://www.alfiekohn.org/parenting/gj.htm

We try talking to him, calming him and understand him but of course if he is violent he is removed until he can calm his body.

Is it the “right” way, I don’t know?  But I do know that I can’t find any other ways that include respecting your children.  I am hoping that this is just a “stage” and with patience we will get past it.

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Christmas, Santa and “Naughty Children”…

So this Christmas I am thrown deeper into “Christmas spirit”, more than ever before.  I don’t know if it’s the age of Kaden & his little sister or if I am seeking it out, like a Christmas junkie.  I LOVE Christmas time, the fantasy of Santa and the excitement of giving and receiving presents.  So does Kaden though, he loves giving presents (sometimes more than receiving them) and he loves parties!

Our children are tired and grumpy, finally its school holidays and they can just “hang out”, but they are still on edge of course, Christmas is coming.

The one part of Christmas that I just can’t cope with is… NAUGHTY CHILDREN!  And that is, the fact that children are labelled naughty (if they misbehave at all) and then told, “Santa is not coming to your house this year”!  How is good parenting manipulating them into being “good” (by their parents standards) by threatening no visit from Santa!

My children are NEVER NAUGHTY… they are just tired, frustrated or angry, the same as their parents.  Or they are expressing themselves (the only way they know how), for something that is upsetting them.  I am so tired at the moment, being the end of the year, organising Christmas and the excitement of it coming.  So that makes me a little grumpy.  No one has told me that I’ve been naughty and Christmas is cancelled, why?  Because I’m an adult, I am respected for being me…

I wonder why we don’t feel the same about our children?

I don’t know why I parent like I do, it could be because of Kaden’s dyspraxia or it could be that’s just who I am.  But the one thing I am sure of is, my children are my equal, they need my love, respect and guidance to become confident adults.

So if you have naughty children in your house, here is a challenge for you.  Today, try just enjoy your children.  Ignore your “to do” list and just have fun with them.  Make Christmas cards, play cars, go for a walk to the park, just have fun!

Have a Merry Christmas everyone!

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Brain drain…

I had an interview last week to review our LifeLinks funding.

http://www.lifelinks.co.nz/WhatWeDo.aspx

LifeLinks support families with a disabled person/child and we are able to get funding for carer support hours, i.e. babysitting money so I can have a break.

While having the review I was explaining a “day with Kaden”, including the little things like him calling out to me every few minutes throughout the day, just to make sure I am still there.  Or asking Umm about just about everything and me having to interpret what he is trying to ask/say.  I explained it by saying, it is just like playing charades with a 5yr old, all day and that I have to be one step a head of him all the time otherwise I won’t be able to understand what he wants to say.

The Needs Assessor said to me, sounds like you have “Brain drain”….  Wow, that explains it perfectly!

Most people would think having a child that doesn’t talk wouldn’t be that big of deal.  Just like having a toddler that is learning to talk, I guess.  Although at 5yrs old, Kaden has more mature thoughts and feelings than a toddler and is expected to be understood as much as anyone else.  It is Brain drain, I spend all my time with him “guessing” what he wants and praying that I am right, just so I don’t hurt his feelings or frustrate him by getting it wrong.

Life for Kaden (and other children like him) must, SUCK!  Imagine being just as smart as those around you but not being able to express yourself in the same way or just tell people how you are feeling.  Thankfully Kaden is generally a positive little boy who is happy with life!

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My iPad review…

Yay, we have an iPad!  As mentioned in my last post, we were gifted an iPad by a couple of fantastic family members.

We have had the iPad for a few days, long enough to have a good play and see what it is all about.  Kaden loves it!  And I am very amazed in how quickly he has learnt the “basics”.

So far we have only downloaded cheap or free apps.  The catch with the free apps – you have ad’s or you can pay for the app and have no ad’s.  So far the best apps I have found for Kaden are;

Talking Tom Cat – Tom is your pet cat, that responds to your touch and repeats everything you say with a funny voice.  (Kaden loves saying things to Tom for him to repeat back, it is great for encouraging speech).

Dexteria – Great for fine motor skills.

Monkey Preschool Lunchbox – Just a basic game for children, it is at the preschool level but Kaden still really enjoys it.

I have also found two great websites that review apps for special needs –

The first one is has video clip reviews –

http://www.a4cwsn.com/

http://www.spectronics.co.nz/article/iphoneipad-apps-for-aac

 

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Generosity…

Today I feel totally overwhelmed by the generosity of others.  Throughout Kaden’s life we have had help from friends and family, financially and emotionally.  But over the past year, and two trip to Australia later, I am still feeling overwhelmed by how much our friends and family want to help.

Kaden had a speech assessment last week with the University of Canterbury (he is part of a study into Childhood Apraxia of Speech) – http://www.canterbury.ac.nz/ucresearchprofile/Project.aspx?projectid=113 and I was stuck for a babysitter for my daughter.  Even with last-minute notice a great friend didn’t hesitate in dropping everything and coming and picking her up.

We had a lot of financial help for our Australia therapy trips and now close family members have offered to fund Kaden an iPad!?!?!  I was brought to tears knowing how much they understand and care enough to offer such a massive contribution to Kaden’s therapy needs.

We have done a lot of research on iPad’s for children with Apraxia.  From what I have read, in America most will have an iPad or at be in the process on getting one.  They are a great communication and education tool.  Here is a great article on Apraxia & iPad’s – http://apraxia-kids.blogspot.com/2011/07/is-ipad-worth-it.html

It was on our list of things to buy for Kaden but never imagined these special family members would offer.

So my great advise today is… love and appreciate your family for all that they do.  Not many people can offer to pay for iPad’s but even if it is just a shoulder to lean on or a last-minute babysitter we are all so lucky to have family and friends.

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From the beginning, part 7…

NV… something else that we have tried is Nurtiiveda – http://www.pursuitofresearch.org/. During our usual online researching we just came across it via a facebook page on Apraxia.  It is a meal replacement full of essential nutrients.  There seemed to be huge success for children with Apraxia so we figured why not!  It is expensive and we had to order it from USA.  Kaden started it at the beginning of September.  Now from what we have read you start slowly and work their dose up each day expecting surges within the first week.

This is my facebook post on (CHERAB Foundation Page) – Day 10 on NV… Kaden has at least 5 new words, seems more focused and is no longer hitting his sister but instead signing “I request you not to” or calling a meeting on her (which is something they teach at school). That is something we have been working on for ages, but it has always been easier for him to just hit her when she is doing something to annoy him. He is just happier… seems so strange and if I am honest I have been very much a “non believer”, I mean really how can just a “vitamin” help?!?!? My husband really believed it would work and I have just been watching and waiting… turns out I’m wrong!

So we were very excited at this stage and continued Kaden on 2 scoops a day.  It was an absolute mission to get him to have it.  We tried all sorts of ways, with ice cream, smoothees, yogurt, milk drinks, icing…. The list goes on!  We continued to see great progress, mainly with Kaden’s confidence.  He got up at his school concert recently and played his recorder!

http://youtu.be/O_LTNGzHw78

Who would have thought he had an anxiety disorder!

Unfortunately since returning from our last therapy trip to Max’s House, Kaden has refused to have it.  I am not interested in forcing or bribing him into taking something that may or may not continue to help him.  I have explained to him that we want him to have it because we hope it will help him talk more but he really hates it.  So we have agreed to give him a break.  Thankfully we haven’t had any regression on the milestones he gain while taking NV.  I am not sure if we will put him back on it or not, it is his decision really so we will just wait and see.

Ok, so that brings you pretty much up to date to now…

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From the beginning, part 6…

And the planning started for our Max’s House trip started.  Thankfully we had offers of financial help from close family members so went ahead and booked our trip for July 2011.  Kaden would have an assessment and then 6 individual therapy sessions (2 per day).

Kaden immediately responded to the therapy and within the first session I had witnessed him say words I hadn’t heard him attempt before.  By the end of the 5 days of therapy I had heard him say more new words than I have ever!

Their approach is very different to any of the public or private therapists we have had in CHCH but after watching it work both Gareth and I believe it will work for Kaden.  We are now armed with lots of information, a DVD of Kaden having therapy and Max’s House support.

We came home with a plan to work very hard on the sounds Kaden already has and use those to create as many words as we can.  I am doing SLT sessions with Kaden 2 mornings a week and we have all his teachers, teacher aides and family on board to help.

It didn’t take long before I realized I didn’t have “enough”, I felt I needed more help and Kaden needed more therapy so we started planning our next trip and again thanks to so many friends and family helping we booked to go October 2011.  This time it was a full two weeks, with Kaden having one session per day.  It was great, he progressed even faster and I learnt heaps about the cues, sounds etc to bring home and continue the SLT work with Kaden.  Even the basic understanding of mixing sounds to make words, for example, Kaden can not make the “K” sound yet but general development of most children in speech means they use a “T” sound until they get the “K” sound… which means we can teach Kaden to say “Kaden” by breaking up the word to “TAY-DIN”…

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From the beginning, part 5…

Kaden started school in February 2011, he had a teacher aide that he loved (an ex playcentre Dad) and a great team of teachers that were all very happy to be working with Kaden.  Then on 22nd February we took another huge step backwards as a whole family with the Christchurch Earthquake.  Thankfully all our family, friends and our home was ok.

When Kaden returned to school we had yet another transision period but thankfully he settled back very quickly.  We were allocated a SLT as part of our ORS funding but as the funding only covered a fortnightly visit we were struggling with the lack of progress with his speech.  He hadn’t actually had any real speech therapy since he was 4 ½ yrs and now he was at school the lack of progress was starting to really concern us.  My husband then got on the Internet and spent hours investigating different therapies used around the world.  That’s how he found Max’s House http://www.maxshouse.com.au .

We rung and talked to their head speech pathologist about the possibility of taking Kaden over for therapy.  He was actually really interested in what I had to say and really interested in Kaden.  He asked lots of questions and even spent time looking on the internet and finding who I would approach to see if I could find a trained therapist in NZ.  I then spent a week contacting every therapist listed on the NZSLT (New Zealand Speech Language Therapy) website and none followed the above therapises.

Decision made, we were taking Kaden to Max’s House.

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From the beginning, part 4…

The Early Intervention Teacher did refer Kaden to TalkLink http://www.talklink.org.nz/ for an assessment to see if he was eligible for an assistive technology device to help with his communication.  She was very determined that this was the way to go with Kaden, rather than working on sign language or speech therapy for words.   At the end of 2010 we received Kaden’s “PC Chat unit” so we had a few months to work on him using it before he started school.

The early intervention teacher then decided we needed to do an assessment with a child physcologist through special education.  Kaden was not even in the correct age range for the assessment they wanted him to do so I agreed on the conditions that it was not formally assessed (with help from my father in-law, a retired physcologist).  Kaden aced the test and we were then told because of this we were not eligible for their help!?!?!

When Kaden was 4 ½ yrs I approached special education again asking for a SLT to get involved and stopped taking Kaden to the private therapist.  I knew we needed to move back into the “system” before Kaden entered school and was determined we would be applying for ORS funding .http://www.minedu.govt.nz/NZEducation/EducationPolicies/SpecialEducation/ServicesAndFunding/ORSOngoingResourcingScheme/FAQsForParentsAboutORS.aspx.  I spent the next few months pushing the new SLT into applying for the ORS funding and helping with the numerous questionnaires involved in the application.  And although we were told there is no point in applying, he would not be eligible, we got it!

After Kaden’s 4th birthday we started investigating schools.  We got the list down to 2, 1 mainstream and 1 with a special character.  The mainstream school was cheap, close and small.  The alternative school had higher fees, was at least a 20minute drive away but again was small.  After spending some time thinking, debating, investigation, we made the decision to send Kaden to the special character school, Tamariki http://www.tamarikichch.schoolzone.net.nz/ .

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