Veronika Will Walk

Never giving up

Ten things people with Down syndrome would like you to know

to the people who think its ok to wave their accessible parking permit at me…

To the people who think its OK to wave their accessible parking permit at me,

Veronika was issued with an accessible parking permit sometime between her 2nd and 3rd birthdays, I don’t know the exact date, as it was something that I didn’t particularly want, but Veronika’s physio suggested I should have one, so I wasn’t carrying Veronika as far. I do know that after I received it in the post, I had a moment, a moment when it hit me that my child had physical restrictions with her mobility, cardiac restrictions with her heart along with other health challenges.

I do know it took me about a year before I actually parked in an accessible parking spot. This was mainly due to Veronika’s physio organizing a car seat for Veronika, that pivots around so I a can lift Veronika in and out of the car without twisting my back, as I was continually in pain from carrying and lifting Veronika. I love the car seat we have, its perfect and suits Veronika and my needs, but to spin it around I need to be able to open the car door all the way, and this is often not practical in a ‘regular parking’ spot , so I started parking in the accessible spots….after all they are wider and I can open the car door all the way, and well Veronika has a permit that allows us to park in them. I don’t always park in the accessible spots, if its a day when we will be using Veronika’s wheelchair(she isn’t walking so we don’t need to be as close to the door as she cant walk far) and there is a park on the end where I am able to open the car door all the way I will often park in that spot and leave the accessible spot.

 

variety car seat

This is Veronika in her car seat that pivots, back in 2012.

 

but the thing is on quite a few occasions over the past couple of years,  after I have pulled into an accessible parking spot sometimes before I have even hopped out of our car, I have had people stop their cars in front of mine, and wave their parking permit at me…..on other occasions after I have hopped out of the car and started walking around to the other side to get Veronika out….I can only assume that people see me hop out of the car and think why have I parked there, some times they may see myself and Veronika’s brothers hop out of the car, and wonder why I have parked in the accessible spot, as I head to the back of the car to get her wheelchair out….

I have been told ‘you shouldn’t park in that accessible spot, you should park in the mothers with prams park, because disabled spots are reserved for people like me’….my response was ‘no I am allowed to park in the accessible park, my daughter has multiple health challenges, and has been issued with an accessible parking permit, she uses a wheelchair not a pram so I will leave my car where it is parked. If you have an issue with that please go around the front of my car and write the permit number down and contact service Tasmania to check’….

sometimes I may just by chance enter a car park a few seconds before you, and pull into an accessible spot….you may see me, a ‘young-ish’ Mum get out of my car, and think its then OK to pull your car up in front of mine and wave you accessible parking permit at me…..but you know what ‘its not ok’ for you to do that….don’t assume that because you see a young-ish Mum, that there isn’t a wheelchair in the back of the car….don’t assume on days that I don’t get the wheelchair out. Because that day Veronika may be able to walk the few meters to the shop to get the couple of things we are after, but she wouldn’t be able to manage to walk from the far end of the carpark…..Veronika was never meant to walk, some days she is doing ok and I know she will be able to manage from the accessible park to the shop and back, and some days she wont so we use her wheelchair…

after you have stopped, and waved your permit at me, then once you see me get the wheelchair out of the boot, and then lift Veronika out of the car and into her chair, don’t drop your face as you realize that you made a bad decison to wave your permit at me….just don’t do that to start with. Yes I know that there are people park in accessible parks without permits, but I am not one of them….and when you wave your permit at me, I get upset as I again am reminded that my daughter has  life long physical challenges….but then I look  at Veronika and see her madly waving and smiling to everyone in the car park and I know that I am blessed, because she is a survivor….

 

car parking

…when I grow up…

when I grow up…..

I want to be  Mum, and a full time carer for one of my children….

I can honestly say that the second part of that thought never crossed my mind. I never thought when I was growing up, that I would have a child with different abilities and that I would then become a full time carer.

I have spent a lot of time this week thinking about what it means to me to be a carer, following the Carer Awards on Monday, where I was announced as the Tasmanian Winner for ‘Carer of a person with a disability’.

I felt strangely humbled when my name was announced, because I  feel that I don’t do any more than anyone else would do given the same circumstances….

My friend Rebecca who nominated me and I at the Carer awards

My friend Rebecca who nominated me and I at the Carer awards

So what does it mean to me to be a Carer?

  • it is such a privilege….its a privilege to be a parent, and being blessed with a child who has different abilities is an amazing privilege
  • its hard work, its relentless, its tiring,
  • its rewarding, and I have learnt more about ‘life’ over the last 6 years of being Veronika’s Mum/carer

What have I learnt from my Carer role?

  • To look after myself….if I don’t look after myself I can’t look after anyone else
  • Believe…..if I don’t dare to dream and believe, it wont happen
  • A worried mother can do better research than the FBI
  • To question
  • That Veronika doesn’t go ‘by the book’ she ‘writes her own book’

but I would say one of the most important jobs of being Veronika’s carer, is to be her voice and her advocate….Veronika needs me to be her voice, until she can advocate for herself.

I am hoping to help educate around perceptions of people living with disAbility, in our local community and further afield, in particular person 1st language. As uncomfortable as it may have been at the time, I have felt I needed to be Veronika’s voice( on many occasions)…an example one time when Veronika was in emergency, at change of shift, the nurse who had been looking after Veronika had to ‘hand over’ to the next nurse to come on shift…..Veronika was referred to as ‘the downs girl in bed 4……’ I then requested that the nurse please use Veronika’s name, not a diagnosis.

I have learnt that its OK to be honest with doctors…..nearly every hospital admission Veronika has had, we have been asked if some student doctors can come and talk to us/or if we can go through a practice exam, which I don’t mind as I think of it as one way to give back to the medical profession that has looked after Veronika……a couple of years ago during one practice exam, the question came up(as it usually does) around antenatal scanning for down syndrome and diagnosis. We had declined the antenatal screening for Down syndrome, because termination wouldn’t have been an option for me. So when I said that I didn’t know Veronika had down syndrome to after she was born, I was questioned ‘why didn’t you have the screening, so you could have terminated the pregnancy….’ my response was off the cuff and straight forward ‘please don’t insult me or Veronika(who was sitting on my knee at the time), I didn’t have the screening because I wouldn’t have terminated the pregnancy, and after all isn’t it your job to preserve life?’

I have learnt that by advocating for Veronika, and being her voice, that there is a flow on effect….that conversations I have had with doctors, therapists and people we meet in our community over the last 6+ years has got people thinking and conversations happening…..

I have learnt that being a Carer can carry over into the community, and this year I was excited to be offered a role as a community member on the Ministerial Taskforce – Improved support for students with disability. It is such a great opportunity to be able to not only advocate for Veronika, but all students with disability.

I have learnt that when I was growing up, I could never of possibly imagined that I would be a Carer for one of my children…but I love it

photo

 

 

Its just not fair……it is what it is

There have been two times on this journey with Veronika that the phrase “its just not fair” has crossed my mind.

The first time I thought “its not fair” was after her 1st MRI from when Veronika was only a week old, and the NICU doctor said Veronika had brain injury from the stroke she had before she was born, and that she would never walk, due to the combination of brain injury and  trisomy 21.

The second time was just over a month ago. This last month has been tough, really tough.

A couple of months ago Veronika’s routine hip surveillance xray showed her left hip had migrated quickly. Just over a month ago I mentioned something to Veronika’s private physio during a school visit that was concerning me. She examined Veronika and shared my concern, throwing in a “its just not fair, with all that Veronika’s been through, we don’t want her having hip issues”. I said to her physio, that thought had crossed my mind, that “it’s just not fair” and now you her physio are saying the same, so really “it mustn’t be fair”. 

This last month has seen Veronika’s gait(the way she walks) change significantly. So much that I messaged a short video of her walking to her private physio late one Saturday and she saw her the following day. Following that appointment she contacted her paed, and then  many of the doctors and therapists who look after our Miss Veronika.

Later that week we spent an afternoon in emergency after Veronika indicated she was in pain. Up until that day Veronika had NEVER indicated when she had been in pain.

Fast forward to yesterday and Veronika had an appointment with her rehab physician who comes over from Melbourne. He examined Veronika and said that her hip needs repairing, and we waited to see the orthopedic surgeon who was over from the children s hospital. Upon examining Veronika he agreed that Veronika needs her left hip repaired.

Veronika will need a left  hip open reduction, and a pelvic and a femoral osteotomy. As far as hip surgery goes this is about as big as it gets…..

Following the examination and during the discussion, the orthopedic surgeon hit me with reality…. “I have to be honest with you, and tell you realistically that there is a strong possibility that Veronika will NEVER walk again following the surgery”….that was the moment the tears started. Without  surgery Veronika will end up permanently in her wheelchair at some point down the track, and with surgery there is the possibility she will never walk again. I said through tears to the room full of specialists and therapists, that we were told once before Veronika would never walk, and look at her go now. If anyone can learn to walk twice its Veronika.

So for now I am past “it’s not fair”….and I am onto “it is what it is”.

There is no point dwelling on the thoughts of  “it’s not fair”,  for now “it is what it is”, and lets stay positive and look to the future of giving Veronika every opportunity to walk again post surgery(we don’t have a date yet for surgery). Look at that smile, how can we not give Veronika every opportunity…with a mix of love, determination, tears and a whole lot of therapy let’s give Veronika the time to fulfill her limitless potential.

loving a chocolate treat last week when we were up in Sydney

Veronika’s transition to school….’about me’ note

In 2012 we were working through transitioning Veronika from ECIS(early childhood intervention services) where she had been attending ‘school/playgroup’ since she was 7 weeks old. Part of that transition was taking part in the pre-kinder program at the school Veronika was going to go to kindergarten at.

 

I had been talking with Veronika’s teacher at ECIS how I had wanted to do a little ‘about me’ note for each of the students Veronika would be in kinder with. The basics of her diagnosis’ and how that may impact Veronika in the classroom. Its something that I was wanting to do since I had seen one a friend had done a couple of years prior. I thought what a good way to introduce Veronika to her future ‘peers’. Many of Veronika’s classmates were siblings of Jordan and/or Jakob(Veronika’s brothers who were already at the school) so they had known Veronika already, but there were new families attending school.

Veronika’s teacher at ECIS and myself spent a lot of time on the wording, we wanted it to be at the 4 and 5 year old level her classmates were. Not big medical words, but also use the proper medical terms, Down Syndrome and Cerebral Palsy.

and this is what we came up with….

 

Front and back cover

Front and back cover

 

the inside page

the inside page

 

I had quite a few parents come up and say it was great to have the ‘about me’ note, and that they had read it with their child after the pre-kinder session.

Then following on from that I had a conversation with  Principal. We decided that I should share a little of Veronika’s journey to kinder, at one of the parent information sessions. I knew if I got up to talk in front of everyone I would cry, mostly happy tears as starting school is a huge milestone for every child, but for us when at one point we thought Veronika might not survive, let alone walk into kinder, with her walking frame. So I decided a short video would be best…

 

 

Maybe if you have a child that is transitioning to school in 2015 this is something that you may be interested in doing for you child, for their peers.

Veronika has been fitted with her kiddieGAIT orthotics….

My girl really is AMAZING, yes I already knew but today she continued to make me so proud of her determination.

A couple of months ago I wrote a blog about Veronika continuing to walk(I will post link in comments). Veronika’s Physio was extremely concerned about Veronika hyperextending her knee and the pressure it was putting on her knee.

Veronika’s Physio looked into a product called kiddieGAITS. They are carbon fibre orthotics. 7 weeks ago Veronika trialled them with her Physio who thought they would be a good fit for Veronika’s needs. We saw the rehab physician a few days later and he had already suggested Veronika try carbon fibre orthotics and he suggested it again, to which we replied she trialled them a few days before…..

Fast forward to today. Veronika was fitted and collected her kiddieGAITS.

Veronika’s orthotist was very excited to see how Veronika goes in them as Veronika is the 1st child in Hobart to get them. Veronika will need time to adjust to them as they activate muscles she possibly hasn’t used before. So we decided after a short walk across the orthotists room we would wait again to after school.

The YouTube clip shows how uneasy Veronika was when we 1st put them on her after school(pulling at my heart strings wondering if I was doing the right thing). The 2nd part of the clip was 2 hours later. My girl really is amazing pushing her boundaries of her comfort zone. To say I’m proud of her today is an understatement.

Obviously technology like this doesn’t come cheap, at $1000 for the pair, but we are blessed to live where we do. Half of the cost will be funded through the hospital, the other half we pay(after what we can claim back from private health)….and perfect timing really as this month we received the top of for carer supplement and that will cover the gap.

We have showed the video to Veronika’s Physio who is excited to see where these take Veronika, and we will see her next week for an appointment. In 2 weeks we go back to the orthotist who wants to do some videos of Veronika in her AFO’s and then in her new kiddieGAITS to compare for her records.

Today has been a great day on Veronika’s journey.

Veronika walking in her kiddieGAITS

 

the NDIS turns 1….’reasonable and necessary’

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

http://www.abc.net.au/news/2014-06-30/concerns-raised-ndis-money-allocation-spending/5556150

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