Blind/Visually Impaired Support Group for kids

[angelkate]

I am Kate, a mother of a two year old, Angelina, but it is me who is visually impaired. I have Retinitis Pigmentosa (and am also profoundly deaf).

I know this is a thread for the parents of visually impaired kids but since I was a young girl I have always vowed that I would one day help other disabled kids. I embarrassingly admit, and share for the first time, that I declared to myself that I would one day be the 'Princess Di' to disabled kids! (This was in the eighties when she was, in my mind, just a sweet princess visiting the poor and the sick. Pre-divorce.) Sounds so corny, but what actually happened was my mother mentioned how wonderful it was, when I was just a toddler, to have met a young deaf woman and seen that she was a success. My mother had been told that I would never speak properly, never finish school, and therefore, not have much of a life. Perhaps that woman had changed my life by letting my parents see that anything was possible. I was never held back. As it is, most people don't know about either of my disabilities, I finished school, got a degree, travelled and worked around the world, married and had a child. Not a bad life for someone who wasn't suppose to amount to anything much.

I am at a stage in my life now (as all new mums probably go through) where, while looking at your own child, you also reflect on your own childhood. I have terrible self-esteem issues and have come to realise that my disabilities and childhood experiences are the direct cause of that. The other day I saw a little deaf boy at my daughter's day care and I had this overwhelming desire to protect and shelter him. It was like I could see his future and it upset me to imagine all the hurt, frustrations, and challenges that lay ahead. It was an effort for me to just walk away, though I do admit I look out for him, and especially his mother, when I go to day care. I am hoping to 'bump' into them and get talking. This 'Princess Di' thing of mine is turning me into a freaky stalker! Lucky for them, (or is it unlucky), we may never cross paths as they go on a different day to me.

Gosh, look at me rambling on. I guess what I am trying to say is that I am more than happy to be a voice for your little ones and answer any questions you may want to ask about growing up as a disabled child.

Being deaf from birth, and legally blind since I was in my late twenties (I am now 37 and still don't use any vision aids although told I'd be fully blind by my thirties), you could say I have been through quite a bit. One thing that comes to mind is one thing you are probably all going through right now which is the endless medical appointments. As a small child I hated them so much but all I could do to express my anger was to revert inside and remain silent. I remember apologising to my parents just a few years back for giving them the silent treatment whenever we went to appointments but all they could remember was that I was such a remarkably patient little girl! They actually sighed with relief that it was me with the problems, not one of my two brothers, who wouldn't have lasted five minutes in a waiting room!

Oh, and while speaking about medical appointments. Even though a small child may not have any understanding of what is going on or being said, they are very capable of noticing that Mummy and Daddy are very upset. I'll never forget the feeling I had when sent out from the eye doctor to the waiting room while my mother stayed in there talking for what seemed an eternity, then emerged crying. It upset me more than finding out that I would go blind. It hurt to see my mother so distraught.

So anyway, my thoughts go out to you all and your very special little ones. I don't know if my little angel will have vision loss. i pray she won't but should she, I know she'll still have a wonderful, successful life. I'll show her.

Please feel free to get in touch if you want to talk about anything. I'd love to help.

Kate

[Sym]

I started typing my post here and my little son decided to delete it... let's try again.

Hi Kate, thanks for your post, It struck a cord with me straight away and brought tears to my eyes thinking about my own son. He's 2 years old and had electrophysiology testing done about 2 weeks ago. I have since got part of the report back which says he has clear cut vision abnormalities and I should expect that his vision will become progressively worse with an average age of becoming legally blind at 15.5 years.

He has Bardet Biedl Syndrome (BBS) and part of this syndrome includes Retinitis Pigmentosa (among other things) but it's the vision loss that really scares me, however it makes me feel a bit better about his future after reading your post and seeing that you have accomplished so much.

I am 21 weeks pregnant and this baby was also diagnosed with BBS last Thursday after I had my ultrasound. So this last week all I have been thinking about is what kind of life my two little boys can look forward to? And what effect is it going to have on my eldest son who is not affected by BBS? It really scares me.

I'm sure I have a million questions to ask you, so I hope you won't mind me coming back here and asking you. It's just at the moment I'm still trying to come to terms with having 2 children with BBS. So thanks again for your post.

[sams_mum]

hi all havent visited in a while hope all is well, wondering if anyone has to patch their LOs eyes? sam is now one and has had his eyes patched since he was 12 wks all was well until about 3 months ago he figured how to pull them off!!! now im trying to find a way to prevent him form doing this. i have tried using mittens and socks and the work ok for about an hour- he needs the patch on for at least 2 hrs every 2 days.
does anyone have any tips or tricks?

[Mum2Princess']

Joel's Girl
Hi I was doing a search on the internet and came across this forum. My daughter is nearly 5months old and was diagnosed with CG at birth. I haven't spoken to anyone in Aostralia who has experienced this so was interested in hearing about your experiences. How is your son coming along? My daughter has had a goneotomy in her right and now trabecolotomies in both. Her Dr is Dr Tan at the Childrens Hospital in Sydney.
Lucia

[kelebek]

Hi ladies,

First of all I want to say what incredibly strong & dedicated mothers you are & that it is great that this support group has been started.

While I don't have a child with a vision impairment I do have retinitis pigmentosa (RP) & as I have the hereditary one it means my son has a 50% chance of getting it also. This is very scary for me, I think the worse part is not knowing if he has it or knowing how bad it will be.

Sym, I can imagine how scary it is to be told that your son is going to be legally blind by 15/16 but I did want to give you hope. I am legally blind & if I didn't tell you you wouldn't know. This is not to say that your son won't face problems & as you mentioned his syndrome is different to what I have.

I would suggest everyone contact Vision Australia they are a great resource for those with low vision, they have tactile books & can suggest all sorts of aids, if necessary start cane training etc... I have used their counselling services but as a teenager went on camps with a whole bunch of other teenagers who were both vision impaired & totally blind. We went abseiling & everything.


Just wondering how everyone is going?

[Dragonbub]

Hi NJD and other mummies with VIPs - visually impaired pups! (My mum wears a VIP badge just so everyone thinks she is important, LOL).

As I have mentioned before, my mum has Retinitis Pigmentosa. Her Grandmother and Uncle had it, and some cousins, but no one else luckily . Some days I worry so much for my son and get cold goosepimples on my skin, but other days I remember how independant and vibrant my mother is (she was told not to have kids because of the risk of passing it on, and is still living by herself at 60) and I know that he will have such a wonderful no matter what it throws at him.

There is not much else to say other than I have so much respect and admiration for those mummies doing it tougher than most, even though I know you wouldn't do it any differentl anyway. I really mean this from the bottom of my heart, well done.

[joel's girl]

Joel's Girl
Hi I was doing a search on the internet and came across this forum. My daughter is nearly 5months old and was diagnosed with CG at birth. I haven't spoken to anyone in Aostralia who has experienced this so was interested in hearing about your experiences. How is your son coming along? My daughter has had a goneotomy in her right and now trabecolotomies in both. Her Dr is Dr Tan at the Childrens Hospital in Sydney.
Lucia

Firstly so sorry I havn't seen this post earlier.

Hamish was first diagnosed with bilateral congenital glaucoma at 4 months and had surgery at 4months and again at six months, had five different eyedrops for approx 3 months afterwards but since then his pressures have maintained themselves.

We see Dr John Grigg at his Gordon Eye Surgery but all surgeries are done at Westmead Children's Hospital. We see Dr Grigg every 12 weeks, hamish's eye pressure is tested at each visit and on every second visit they put drops in his eyes to allow them to dilate enough to do a field test of sorts to gauge the eyes developement. From what we've been told his eyes are developing at the normal rate. Originally they said he would require glasses at about 1 years old to correct his short sightedness but from the field tests they don't believe that to be necessary. Until he is old enough to communicate the results we won't truly know what / how far / how clear he can see.

We are seeing great improvements in him all the time. The glare / sunlight can still be a problem but not near as much as six months ago. We are crossing our fingers that we are one of the lucky ones that had corrective surgery early enough to prevent any longterm damage to the vision - this being said, Im more than aware that at ANY time during his life the pressure can rise again and cause damage so I know we are not out of the woods so to speak.

Happy to talk to you further and willing to provide you my email address i you wish to support each other through this.

All the best with your little one......

Cindy

[WillowsDad]

Hi all

Our little girl has just been diagnosed with Posterior and Anterior HPHV in her left eye. We have begun patching to see if there is any vision at all and I dont think there is at this point. The first Pediatric Opthalmist said there is nothing w can do surgery wise. We are having a second opinion in a couple of weeks.

We are over in Sydney and would love to speak to some other parents of children of any age with the same problem

geoff.freer@oilsearch.com

Geoff, Miriam and Willow

[MistyFying]

Hi Geoff and welcome to BellyBelly. I hope you soon feel at home in this community - and that some of the parents of visually impaired children pop in to this thread soon.

[braillecat]

Hi.
I've just found this forum while searching for something else, and I wish I'd found it earlier!
I was born with congenital cataracts, and am now legally blind, and my younger two children (boy and girl twins) have also got it - I didn't know it was a genetic thing until they were born.
My son has also had glaucoma in his left eye.
My kids are nearly ten, and they are doing really well. Those parents with kids getting ready to go into preschool or childcare, from personal experience, you need to go to the place and let them know, and try and let them know EXACTLY what your child can and can't see. Do it early, like two or three months before they start there. Tell them how you deal with situations at home so they can do the same there. I did this with both playgroup and preschool, and the teachers said it was useful to have advance warning, as well as info on what to do, because they could look stuff up to help as well and not just get thrown in the deep end.
Hope everyone's operations and tests go okay.
Michelle

[jayne73]

Hi my name is Jayne, I have three beautiful children (2 girls and a boy). We found out shortly after birth our son, Lincoln has bilateral iris choroidal colobomas, strabismus and nystagmus. We have been on quite a journey, communting to Perth every few months for testing.
We are currently awaiting results from electrophysiology done a month ago to determine if Lincoln will have a high visual impairment. He is also being tested for the CHARGE syndrome.
It certainly an overwhelming time but we have encountered some terrific services and people already.
I'm glad I found this group , it will be wonderful to share experiences and ideas .

[Kaylee'sMom09]

Hi All,

I am so glad to see that this website is available. My daughter, Kaylee, was born with vision in only one eye. She sees nothing out of her left. It has been quite a struggle and adjustment learning to deal with this. She is in 2nd grade now. We had rough time during K and 1st grade.

She amazes me more and more every single day with what she has overcome to deal with her school work. I am proud to say, she has all A's and 1 B this six weeks!!!

My hearts and prayers are with you mom's that have a child with a vision impairment! Stay strong and keep your heads up!!!

Jade

[Bridg]

Hi all. Not sure if I fit into this category or not, so if I dont, just let me know.

DS Logan was diagnosed with Oculocutaneous Albinism last week, after the MCHN picked up roaming nystagmus.

I have a house call from Vision Australia on the 19th November, to talk more about Logan's vision, and how we can improve it.

Bridg.