10 replies to this topic

[JulesUK]

If anyone has any child-related or tips, I would be interested

As you will see from my sig I have a child with a spinal injury (although a birth defect, not from an accident).

[Caliente]

I have a 15 year old daughter with spina bifida. I'd be more than happy to answer any queries you have, if I'm able to.

[wheeliebear75]

Like John I was a teenager at the time of my accident. I was 14 and recently turned 32.

[luckymom]

I have a 6 year old who suffered a cord compression at 5 months old.

Good to hear from another parent!

[Theresar360]

luckymom, on Sep 20 2007, 07:42 PM, said:

I have a 6 year old who suffered a cord compression at 5 months old.

Good to hear from another parent!

Hi. I have a grand daughter who is just 23 months old who is a quad. She was injured 4 months ago in a MVA. I don't know how much I can help but would be glad to offer an ear anytime. Sometimes we just need to vent boy can I attest to that one. There have been plenty of people here who have helped me time and time again. They will never know how appreciative I am to all of them! Like I said anytime you need to just talk I am here......Theresa

[USMC_FMAgirl058]

When I was 7 I was in an accident that left me paralyzed. I'm now 18. If you want, ask away. I'll do the best I can or ask my mom since she -is- the parent.

[tarryn]

Hi
I am an occupational therapist and am happy to offer suggestions about specific needs for your child.

[Justa]

Hello Jules, I have 8year old with spina bifida at almost the same level as your girl. We are in UK as well. He is a good para, doing transfers, plaing basketball etc. I think your girl must be about my son's age now. I will be very happy to chat.
Take care ,
Justa

[josiejose]

I was born with a congenital SCI (like SB but not quite the same thing) at L1, am now T10 incomplete due to spinal cord tethering and some other fun stuff. I'm all grown up now, but I work a lot with kids in chairs so I'd be happy to help in whatever way if anyone has questions. It's really important that parents understand that their kids have huge potential, because the saddest families I know are those who believe that their child's life ended when they had a spinal cord injury and never let the child become an adult after that. I have such respect for parents of kids with disabilities, it must be very hard to know when to let the child make mistakes and figure things out for themselves, but I can tell you from experience, that's the only way to become independent.

[cycleboy99]

I will echo what josiejose said. I sustained a T-12 injury at the age of 4 and the most important thing my parents did for me was let me be a kid and try stuff and occasionally fail... it's how we learn... over-protecting your child because they have have a SCI does them no favors... it just slows down their development. Having an SCI does not make us any more fragile than other kids...

[jemcrosbie]

My daughter Phoebe was 3 years old when she suffered a complete SCI at C1-C3 as a result of a hit and run accident and is now quadriplegic and ventilator dependent. She is 13 now and great fun. She lives life to the full, attends mainstream school and has lots of able-bodied friends.

My late father was a doctor and he always told parents of children with disabilities to remember that they were children first and foremost and to let them have fun, to try things and to make sure that they [the parents] didn't become their child's greatest disability.

Remembering this I have spent the past 10 years taking Phoebe swimming, skiing at a local dry ski-slope, to playgrounds where we have lifted her onto slides, roundabouts and bouncy castles etc. When she asks to do something I will always try to work out how she can do it and have spent hours trying to do activities myself using a stick held in my mouth so that I can teach her. Yes it is scary and I often wake up in a cold sweat, but the look of sheer pleasure on her face when she achieves something is more than worth it.

We live in a world where risk is being legislated out of existence for even able-bodied children. It is important to take reasonable precautions with a paralysed child (body braces, neck braces etc) but a bit of healthy risk taking is important as well, otherwise you are only providing your child with an existence, rather than a life.