Veronika Will Walk

Never giving up

Ten things people with Down syndrome would like you to know

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

5 star awards = Walk up to get a Principals Award

One thing I won’t ever get sick of, is hearing the excitement from the students, teachers, staff and parents at school….at Mondays assembly Veronika was presented with a Principals award for receiving 5 star awards at school. That in itself was very exciting and by all accounts Veronika was delighted when our acting Principal Mrs Richardson called out Veronika’s name(I was at work and missed it) but the messages, texts and words from our school community over the last few days has been so special. Saying they were just so amazed and delighted to see Veronika get up and walk independently up to Mrs Richardson for her award. It’s beautiful to know so many people have joined this journey with our family, and as a couple of the Mums said they were so excited and so proud of Veronika that they may of had a few tears of joy…Thank you for celebrating such an amazing milestone with Veronika
Photo: One thing I won't ever get sick of, is hearing the excitement from the students, teachers, staff and parents at school....at Mondays assembly Veronika was presented with a Principals award for receiving 5 star awards at school. That in itself was very exciting and by all accounts Veronika was delighted when our acting Principal Mrs Richardson called out Veronika's name(I was at work and missed it) but the messages, texts and words from our school community over the last few days has been so special. Saying they were just so amazed and delighted to see Veronika get up and walk independently up to Mrs Richardson for her award. It's beautiful to know so many people have joined this journey with our family, and as a couple of the Mums said they were so excited and so proud of Veronika that they may of had a few tears of joy...Thank you for celebrating such an amazing milestone with Veronika ⭐️

 

Veronika Will Walk…

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

but

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.

finding Veronika’s voice….could it be an accent 1000?

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. 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.

 

Learning to use the Accent 1000

and she was pretty impressed with herself as you can see from the photo below!

sppech therapy 1

 

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

‘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

http://www.aacandautism.com/resources/MinspeakUnity.pdf

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