The National Disability Insurance Scheme(NDIS) trial turns 1 tomorrow….for our home state Tasmania it’s been rolled out for the 15-24 year old cohort. The federal government has begun tightening it’s belt on what’s deemed as ‘reasonable and necessary supports’. One item in question is iPads….for us an iPad was the beginning of Veronika developing fine motor skills. Due to her severe hypotonia everywhere, combined with her left hemiplegic cerebral palsy, she couldn’t get a cause and effect out of ‘traditional toys’. We purchased Veronika an iPad out of the carer supplement when she was 2 and a few months old. She went from minimal fine motor skills to isolating her index finger in 3 weeks and we haven’t looked back. Today those fine motor skills of her isolating her index finger is now being used to give Veronika a voice. We have been trialling an Accent 1000 device for the last few weeks, with amazing results. I have now managed to get the app onto her iPad, it’s no where near as good as the Accent 1000, but for now it will have to do. The Accent 1000 has been returned to access communication ready for the next person to trial it….
the link to the story ABC ran on the NDIS turning 1
Veronika Will Walk…
Just over 6 years ago I was told Veronika would never walk, following her 1st MRI when she was a week old.
6 years ago I made a commitment to my baby girl, that one day she WOULD walk, that she would walk into her 1st day of school….and in February 2013 she did just that. She walked into kinder with the assistance of her trusty walking frame.
This year, 2014, so far has been an amazing year for Veronika. 5 years and 10 months after I was told Veronika would never walk, she began to walk independently, and her teacher captured that moment as she tottered around the classroom….and she has become more stable on her feet since. This was on Easter Sunday, a month after Veronika started to independently walk.
Veronika Will Walk….medically not possible, but with the power of love and determination the impossible became possible….
and I continue to believe Veronika Will Walk
I have had many people ask me when and what I am going to change the name of my blog to, because Veronika is now walking
in true Veronika style she continues to write her own book.
Veronika is walking…for the moment and I am so unbelievably happy that she is walking…
but I have to believe Veronika will continue to walk….
in true Veronika style the goal posts keep moving
EVERY step Veronika takes puts an unbelievable amount of stress on her joints, and she has begun to hyper extend her left knee(her side affected by her hemiplegia)when walking. I was told by her physio to not let her walk once she tires and starts hyper extending her knee. I thought that Veronika was only hyper extending her knee when she was tired, but when another physio looked at Veronika, we noticed she is hyper extending her knee on EVERY step, and the physio then said if we don’t do something NOW to preserve Veronika’s joints, she WILL NOT physically be able to walk within 2-3 years….
and I was shattered ALL over again…
because we have worked so hard to get Veronika to the point where she has found her feet, and then to find out with in a couple of months of her independently walking that she may not be able to walk long-term and may be fully dependent on a wheelchair with in a few short years.
so today Veronika CAN walk
and into the future Veronika Will Walk
and continue to walk, guided by her specialists, doctors and therapists that look after her.
Last year, when I had Veronika at one of her pediatrician appointments we were discussing Veronika’s communication methods. We started signing with Veronika when she was around 5 months old, and it took around 10 months before we got a sign back from her. Once she started signing though, Veronika progressed pretty quickly with learning new signs and using them appropriately.
One of the things that has been of a concern to me for quite some time now, is Veronika’s speech, or more accurately lack of speech. So I had the discussion with her pediatrician last year about that…..my question to her was, ‘when Veronika had her strokes, could she have been left with some brain injury around the area of the brain where you speech comes from? Her response was that it was quite possible, more than likely, but did was really want to go looking for ‘anything else’? With the risk of having another MRI under anaesthetic, when at the end of the day would it really change anything I was already doing with Veronika to help develop her speech.
I know all children of all abilities develop at different rates. I know children with trisomy 21 often talk ‘later’, and I know children with cerebral palsy often talk ‘later’ than typically developing children. My thoughts were more along the lines of ‘will Veronika talk’(more than the few words she could say). I know there is no such thing as a ‘crystal ball’ that can predict what may or may not happen…..but I know Veronika has a voice that needs to be heard. I know that Veronika understands what is said to her, I just want her to be able to have a ‘voice’, until she has the ability to talk verbally.
We had been using a combination of sign language, picture cards, the couple of words she could say(Mum and Dad) and an app on her iPad proloquo2go. http://www.assistiveware.com/product/proloquo2go
A couple of months after that conversation with her pediatrician, I was working on a reading program for Veronika, based on whole word recognition. I had made some flashcards and Veronika would be able to sign what was written on the card back to me….and then we started matching word to word.
The next step in the reading program that I was pretty much making up as we went to suit where Veronika was at, was to make her 1st home reader. Being in her 1st year of full-time school, Veronika’s peers were going to be taking ‘home readers’ home….and we didn’t want Veronika to be any different……but how do you teach a basically non verbal child to read? Most of the early readers that I have seen have sentences like “this is my____”, and I wasnt sure how to teach Veronika words like this, is, and, the(etc) so I thought if she could have a book full of her things, then she WOULD be able to read it. Veronika can sign her name(she signs a V on her left forearm for her name) and could then sign the second word in the book. My goal for Veronika by the end of the year is to read 3 word sentences.
We also made up a sheet that Veronika can bring home in a letters and sounds folder(so it looks the same as the ones her peers have) and she has 4 words that we practice until she is ready for her teacher to test her on them. Veronika has a real love of learning, and a love of reading…..but as a Mum I still wanted Veronika to have a ‘voice’. One of my long-term goals for Veronika is to be understood in her community. For the most part I know what she is trying to ‘tell’ me, whether it’s a combination of her using her signs or visual cues, or just a process of elimination, but there are still times(often multiple times a day) when the frustration levels rise, Veronika’s and mine, because I just don’t understand what she is trying to tell me.
It was suggested to me, that maybe we look into a different AAC(Augmentative and Alternative Communication) device, one that might be more compatible with learning to read and continuing to expand Veronika’s vocabulary. So I had a chat to Veronika’s speech pathologist and she was happy for us to explore some other options. As we were talking I was saying to her speechy that if I could see into the future and someone could tell me when Veronika will talk verbally, if it wasnt going to be far away I wouldn’t look at another device, but unfortunately we can’t predict ‘when’ Veronika will talk, and her speech to be understood in the community, so we need to give her the best chance to develop her speech in the mean time.
We made an appointment with our local access communication speech pathologist, and he came up with 2 options and thought one might just suit Veronika more. So he arranged for us to borrow an Accent 1000 for a month, which we picked up almost 2 weeks ago. http://www.liberator.co.uk/accent-1000.html
It has been a pretty steep learning curve to get my head around a different AAC device, but with the help of the access communication speech pathologist, and Veronika’s private speechy Veronika had been putting some really nice 2 and 3 word combinations together, eg when drawing and wanting a colour ‘need colour pink’(or which colour she would like). Veronika and her speechy had a really lovely ‘learning game’ going on last week at her appointment, where she was asking for the colour of the things she wanted to roll down the tube.
and she was pretty impressed with herself as you can see from the photo below!
but this afternoon Veronika blew me away…..I was in the kitchen when Veronika tottered her way over to me and looked at me. I asked her to tell me what she wanted, as i held the ‘talker device’ in front of her
‘want eat cookie please’
Amazing, a beautiful 4 word sentence with manners! There was a descent amount of clapping, cheering and high 5-ing and then I gave Miss Veronika her cookie…..
Here is a link to some information about Minspeak and unity which Veronika is uning on the accent 1000
This Friday is World Down Syndrome Day(WDSD)….World Down Syndrome Day is a global awareness day celebrated on 21st March every year.
The date for WDSD being the 21st day of then 3rd month, was selected to signify the uniqueness of the triplication(trisomy) of the 21st chromosome, which results in Trisomy 21 or more often known as Down Syndrome.
In conversations I have had with people over the last almost 6 years since Veronika arrived, I have had people say things like….
‘I don’t know how you do it’ or
‘Your such a strong person, of course you will cope’ or
‘I couldn’t do what you do’
Statements likes these, even though they are spoken with good intentions and love, still shock me…. I often think ‘how do I do what?’
Love my child?
Of course I love Veronika, just like I love her brothers Jordan and Jakob.
You see love doesn’t count chromosomes.
I’m a Mum, a wife, a friend, a Carer, a therapist and an advocate amongst other things.
I remember back to when Veronika was around 5 months old, and I had has someone say something along the lines of ‘your such a strong person, of course you will cope’. I remember having a ‘moment’ and hating that comment…..because to me it felt like I wasn’t allowed to have those ‘moments’ when it all seemed so much because people ‘expected’ me to cope.
But love doesn’t count chromosomes….
And I love our three children dearly, and would do anything for them.
So here comes the crazy part….
I have always been a dreamer, a goal setter, a challenger.
The last 5 months I have finally started doing something for myself, physically and mentally. Last October my GP wrote another referral for me to have a steroid injection in my shoulder to treat the injury caused by lifting and carrying Veronika. I thought there had to be a better way than to have another injection. I figured if I could strengthen the muscles around my shoulder then that might help, and maybe help the constant back pain too.
When our eldest Jordan was at water polo training of a Saturday afternoon last October, Rachael a friend and I decided we might as well have a crack at swimming laps. I am not a lap swimmer, and never had been. Trying to ‘swim’ that 1st 50 metres that day, my lungs hurt, I mean really hurt. But slowly bit by bit I began to be able to swim further…..and now I can swim 2km…..
So I have decided to set myself a goal…
To swim 321km over the next year. Why 321? To represent 3 copies of the 21st chromosome = 321km
I will strive to achieve this goal over the year until WDSD in March 2015.
I want to use this swim goal to help raise awareness of people with Down syndrome, but also for Carers. One thing I have learnt over the last almost 6 years is that Carers tend to put themselves last on the list of priorities….but how can we continue to care for our loved ones long term without 1st taking the time to look after ourselves?
So this Friday March 21st, I will start off following the black line in the bottom of the pool, on my goal to swim 321 for t21…..I will swim for Veronika
The pathology request no parent of a child with trisomy 21(Down syndrome) wants to see with their child’s name on it.
Children with trisomy 21 are at an increased risk for developing leukaemia than typically developing children….
and petechia ( http://en.wikipedia.org/wiki/Petechia ) in children with trisomy 21 can be a marker for leukaemia….
the last few days have been stressful to say the least, from when I first noticed a petechia spots on Veronika, through to today when we saw her pediatrician.
In between the 1st spots, to the paed appointment, Veronika has had 2 blood test, both of which came back with an abnormal white blood cell count.
but today I heard the best sentence from Veronika’s pediatrician I think she has ever said to me….
“Veronika doesn’t have cancer”
Even though she has an abnormal white blood cell count(low) it seems that this may ‘just be another one of Veronika writing her own book, not going by the book’ situations. Her platelet count is in the normal range, and the petechia spots have disappeared. She still has low white blood cells, and as the paed looked back over Veronika’s blood tests it appears that low white blood cell count, may just be how Veronika is. Which may help explain why Veronika has suffered with many infections over the years. Because her white blood cell count is low, thus she isn’t able to fight off infections.
I must also apologise to anyone who may of had a conversation with me over the last few days, if I appeared to be a bit vague(more so than usual) or a bit stressed. I hope you weren’t offended, but I had a lot on my mind.