A Mum's Journey with Dyspraxia

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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From the beginning, part 3….

Kaden was also seeing an Occupational therapist from around his 3rd birthday, this was again through the public system at Beacon House http://www.cdhb.govt.nz/cwh/burwood/beacon_house/beacon_house.htm .  She was wonderful, worked on all sorts of things, gross and fine motor skills.  And was happy to help with anything we asked.  We worked for a long time on Kaden learning to ride a bike, finally (with trainer wheels) he started just before his 5th birthday.  We continued seeing this OT until Kaden entered school.

Going back quickly to when he was 4yrs, we finally got a referral to a Child Neurologist (Private system) http://www.childhealth.co.nz thanks to the OT.  Finally an official diagnoses… Severe Oro Motor Dyspraxia.  The Neurologist was fantastic and had some wonderful advise….

1                     Don’t turn my back on the public system, I would need them when he started school.

2                     Don’t over therapy him or he will rebel against it.

3                     The best thing we have done is give him a baby sister.

The Neurologist also referred us to the child physiologist team at Whakatata House (Public system) as Kaden was having problems with separation anxiety.  I attended a course for parents with children who suffer from anxiety.  The beginning of the course was great, they explained how the brain works and how anxiety is something that is very difficult to control, especially in anxious children.  Then they went on to say we needed to basically force our children into doing the things that made them feel anxious otherwise they would never have a fulfilled life?  I couldn’t’ understand how that could or would work?  I finished the course feeling more confused than I did at the beginning.

At that stage we then went back to the public system and got involved with Early Intervention through Special Education.

We continued with private speech therapy at Seabrook and was allocated an Early Intervention Teacher.  I am not completely sure what her role was suppose to be?  She assessed Kaden at Playcentre and then encouraged us to look at kindergartens.  I visited a couple which just made my decision about saying at playcentre more firm!

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From the beginning, part 2….

So we went private… we found a therapist that had a good background and highly qualified.  She spent her sessions working with me, giving ideas on how to encourage more speech and sounds as he was at that stage too young to work with direction, in her opinion.

Finally we starting seeing a SLT at Special Education when Kaden was 3 yrs old.  She determined that there was a speech delay and we booked him in to have 1 session per fortnight.  During those sessions the therapist would show Kaden an exciting toy, then show him a picture card (for example a sheep and the word “ba” under it).  She would say to Kaden, say ba, say ba, say ba… finally Kaden would say something and she would then give him the toy to look at.  Then less than 60 seconds later she would take the toy off him and start the process again.  Needless to say it only took a couple of sessions before Kaden didn’t want to go.  When I explained to the therapist one day that he had thrown a huge tantrum before coming I was told that maybe it was time we looked at kindergarten because if he was left to his own devises then he might get the push to talk!?!?!?

So we went private again… silly really, looking back on it I should have complained and got another therapist through the public system.  I guess at the time it was all new to me and I was just learning how to “fight the system”.

Seabrook McKenzie http://www.seabrookmckenzie.net/  was our next stop.  My brother had gone there when he was younger and they had helped him and my mother heaps.  The SLT at Seabrook was awesome.  She really cared about Kaden and put a lot of work into their sessions.  She based her therapy on the Nuffield programme and would work with Kaden as much as we wanted (or could afford).  We did blocks, generally 2 sessions a week for 3 weeks then a break of 2 weeks.  My only concern with this SLT was she never pushed Kaden and I felt he could have been pushed a bit more.  He loved her though and continued seeing her until he was 4 1/2 yrs when we finally went back to the public system.

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From the beginning, part 1…

Time to get some information out of my head!  Why a blog you ask?  Good question!  I guess I see this as my opportunity to share information about our battles with Kaden.  And if I can create a little more understanding and/or help someone with their battle then it is so worth it!

This blog will mainly be about my son Kaden.  Kaden has Oro Motor Dyspraxia (Apraxia of Speech /Verbal dyspraxia).  Kaden is now just over 5 ½ yrs old.

Ok so starting from the beginning….

Kaden was born in January 2006, emergency c-section because he was undiagnosed breech.  He was bottle feed from day 7… Why is that valid information, well I never got any milk in and the thought now is, he most likely couldn’t suck correctly/hard enough to bring my milk in… First sign there was something wrong, without us even realising.

He was a good baby, loved routine and settled easily if not left to get over tired.  As a toddler he was slow to hit his milestones but did eventually get there.  And with the support of doctors and Plunket, reminding us that he was “just a boy, boy’s are always slower”, we figured he would get there.  By the time he was 22 months old he had a small hand full of words, dad, mum, no… then he got the rotavirus.  A severe gastro bug that had him vomiting for days and then diarrhoea for another week.  It was the sickest we have ever seen him and by the end of it, he had no words.

Just after his 2nd birthday we realised words were not coming back as fast as they should so we visited a private paediatrician for more help.  She thought there might be a delay so referred us to Special Education (Ministry of Education) http://www.minedu.govt.nz/NZEducation/EducationPolicies/SpecialEducation/AboutSpecialEducation/WhatWeDo/SpecialEducationServices.aspx for a speech assessment.  We seen them not long after for a “quick” assessment (15 minutes max) and in that the SLT confirmed there was a delay.  He was then put on the wait list for a Speech Language Therapist to work with him.  We were told the wait would be up to 12 months…

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