[Courtney20]

I'm a T12 and in a wheelchair.. It has only been 11 weeks since my car accident.. I have a 4 year old daughter and a 7 month old son.. How am I supposed to take care of them? I feel like I'm missing so much I could have been doing with them.. HELP!!!

[Joed]

My son was three y/o at the onset of my paralysis. I know how it can break your heart thinking about how their childhood might be changed because of what has happened, but I hope you can believe me when I tell you that it won't be as difficult as it seems now.

And the kidlets...well...they won't even miss a beat. It's hard, but try not to let your sense of sadness/loss become cues to them on how to perceive this change...because they will look to you for confirmation on how they should feel.

I mourned the losses too, but then as time went by and I regained some strength, got past most of the debilitating pain, and began reclaiming my life, I was surprised and thrilled to discover that there is still so much I can do with my son.

It will probably take a measure of creative problem-solving, a dose of courage and tenacity, and lots of modification, but be afraid of no-thing! You'll see....it will get better!

You're still so very early in your recovery. Nothing stays the same...and neither will you.

I'm five years post-SCI, and I'm now able to enjoy almost everything I want to do with my son. We practice baseball, fish, ride mini-bikes, ride bicycles (well, he rides the bike...I follow along in my scooter ), build wood-crafting projects and camp. I drive him to and attend all his Scout meetings, school activities, and birthday parties. We take solo trips to Six Flags, Chicago, and just long drives in the country. At first, most of our activities together consisted of contrived games on the ol' Magna-Doodle, reading (which, btw, has made my son an excellent reader), and less active things.

You'll still have your moments when it hits home more than usual, but you'll also have your moments when the sun will break through and you'll feel blessed. Mine was when I was watching my son play baseball. Up to that point I had been unable to tolerate sitting long enough to watch an entire game, but one day I realized that I had only one more inning to go. I remember closing my eyes, feeling the sun on my face, hearing all the crowd noise and thinking, "I'm back!" Back from hell, but back nevertheless. Those are the shots in the arm that will carry you forward.

You may or may not have given this much thought yet, but your children will most likely benefit by becoming more empathic, helpful and creative people...something this tired, old world needs.

Your situation is more complicated than mine was in that you've a child who is still toddling. Although I wasn't in a w/c when my son was an infant, I did have neuro-deficits during that time. Enough so that I didn't trust my body to be able to carry him from room to room...so I used an umbrella stroller in the house to transport him to where I needed him to be.

My biggest fear was not being able to get to my son in a dire situation. I kept him close to me when it was just the two of us away from home, using a child harness. When going swimming, I always bring another adult along, even though I can still swim, I worry that I wouldn't be able to get to the water quickly enough if necessary.

For your own peace of mind, you may want to invest in a simple child lock for your outside doors. The one I have is installed high on the door and is a simple hinge design that prevents a child from pulling the door open.

As I'm sure you already know...children grow so fast. Many of the issues you're facing now will be distant memory by next year...replaced by other issues, to be sure, but by then you'll be ready for them. Take one bite at a time...that's all any of us can do, really. Your confidence will build, your ingenuity will surprise you, and your children will too.

But for what it's worth, I do know how your heart breaks. It's something we must go through, I suppose, but don't let it envelope you. Especially don't let it define or limit you. You have yet to discover what you're capable of doing. Remain strong and hopeful...I'm just a voice from the other side of things, but I can tell you that it does get better and your life will be rich with these.

Message me anytime if you'd like to talk or swap stories/ideas.

[kewlcatkez]

Courtney20, on Mar 7 2008, 08:35 PM, said:

I'm a T12 and in a wheelchair.. It has only been 11 weeks since my car accident.. I have a 4 year old daughter and a 7 month old son.. How am I supposed to take care of them? I feel like I'm missing so much I could have been doing with them.. HELP!!!

Hello Courtney,

Good to meet you, although I am sorry that it has to be under such circumstances. Joed gave some excellent advice and testimony and I would like to share my experiences also, in the hopes that it will reassure and help, even if only in some small way.

I am paralysed (chair user for around about 3 years) and have severe dislocating EDS ( means I dislocated multiple joints, multiple times daily - which although were present before, were not every day..now they are as a result of hormonal influence, an accident and the fact that it usually progresses due to the trauma of the proceeding dislocations etc etc.- has gotten worse over last few years). I also have the other stuff which goes with all of this ( pain, POTS, Autonomic dysfunction etc). I am a Mother to 2 beautiful children (5 and under) and wife to some bloke, lol...I am also a qualified RN who is no longer working in a clinical setting

When my paralysis hit, and my joints were worsening, my children were much younger, my daughter a baby and her brother 18 m older. I worried constantly that they would be "taken" from me. It didn't help that my husband was working long hours and I was alone with the children for vast amounts of time.. It all came to a head really, when I needed to have an assessment with an OT so that we could get access to funding for a Ramp and Stair lift, I had to be shoved on the Caseload of a Social Worker. She turned out to be pleasant enough yet condescending and patronising...

I became extremely paranoid that she was assuming, thinking, believing that I was an incapable mother. I am sure you can see where this is going. To cut the long story a little shorter, I think that is when I built a metaphorical wall around me, and plastered on a smile and pretended that I was alright. Sure I was disabled, but I was superwoman, SuperMUM!

If the truth is said, I had to find ways around things ( I couldn't lift the baby etc) ..and I DID. You know what the other fantastic thing is that kids take you as you are, I think that is especially true when they are your own. To them I am *just* mummy! I have worried that my son will be ashamed of me at school ( he is 5) etc due to the chair..yet he is the opposite and all his friends want to sit on my lap etc! It may all change, but kids tend to take things in their stride a lot more than adults.

With regards to your situation, the paralysis and the future is daunting, all of us go through that feeling and you will/are too.. Like I have said on here before, I always would think about not being able to play football or climb trees together or show them the dances I used to do saddens me, yet at the same time we have such a fab relationship now - we do quality things together , I DO get on the floor and play and even though I look like a stuck worm, its fun for the kids and they see me as their mum playing with them, not a disabled person on the floor looking silly.. well maybe they see the silly bit!

Like I said, I have two children, and they are my everything. I feel that they are my motivating forces a lot of the time in that I do all I can to make life normal, in fact we seemingly go beyond what other parents do a lot of the time because I want my children to look back and have good memories. Much of the time this occurs without expense and getting around the problems my disability can bring. An example is in the winter months when it was too cold for us to get out I would fill the paddling Pool in the front room, using the hose pipe and they would play in the water! LOL, my hubby who works long hours would be left the mess when he came home! lol. Soooo I would invent a 'game' to empty it. Something which is hard for me to do physically as my shoulders, wirsts, everything etc dislocate on minimal trauma, heck they do it spontaneously!..., not to mention the whole being in the chair thing... This is just an example, but its something I would have done before the wheelchair, so instead of thinking I can't ..well you get the picture.. I want them to have memories NOT filled with what I couldn't do, but what we did do..

The thing is without my kids I would have probably wallowed in my despair..or would I ? Its so difficult to say what would have happened..maybe I would have had another 'force' to give me the "umph" I needed to keep my head above the metaphorical waters?
My kids are also very bright 'gifted' I am told and I worry that will become a stress for them, feeling different and we all know that they will feel different re me when they are older..as it seems to not cross their minds now..lol. My just turned 4 year old is doing the work they do in the actual school, is reading and doing a lot more, so on and my 5 1/2 year old is way ahead of his peers. I wonder if the gifted/ability of our kids is a positive 'side effect' of the disability? What I mean is that I spend so much quality time with them that msybe it helps channel their thoughts? perhaps people who are not physcially disabled are busy spending quality time doing physcial stuff?? ( not that it is wrong or bad, just different). We would have dilemas and worries to concern ourselves with no matter if we were able bodied or as we now are...I suppose what I am saying is that you will find ways to reconnect as well as doing the every day care taking, we mums do - and much more...Not that this happened for a reason, but that perhaps aspects of it can impact positively on us as parents...

Untimately, it is so very early on with everything, yes, it is a very daunting and scary time, but hopefully you have the support of your family and friends, and if not, and for the advice of those who have/are been there, do pop by here (apparelyzed) and perhaps you can look into support and advise here and at the local chapters of the links found for eg here : http://carecure.rutg...toresources.php

There are also a few links which may be of use which are there to inform and support parents whom may have a disability: The UK based http://www.disabledparentsnetwork.org.uk/c...n/site/site.cgi and Sites such as Disability Pregnancy and Parenthood International (DPPI) http://www.dppi.org.uk/
Through the looking glass http://lookingglass.org/index.php
and the BPA -Baby Products Association, http://www.b-p-a.org/ including the following: http://www.b-p-a.org/bpa_/images/news/Conc...y%20Carrier.pdf

I wish you well and hope that soon things will become a little less overwhelming, and the day to day routines a little (well a lot) easier. Know that you are not alone. Please do not be harsh on yourself, you are still in the early stages of a massive change, and you need time to relearn and to gather yourself up, dust yourself down and carry on with life. It can be done though - parenting after disability. I am sure that already you are a good mother and that that will continue.

Please let us know how you get along as time goes by,

Take care,

K

This post has been edited by kewlcatkez: 09 March 2008 - 12:30 AM

[holmes]

Courtney20, on Mar 7 2008, 08:35 PM, said:

I'm a T12 and in a wheelchair.. It has only been 11 weeks since my car accident.. I have a 4 year old daughter and a 7 month old son.. How am I supposed to take care of them? I feel like I'm missing so much I could have been doing with them.. HELP!!!

Hello,
I've been in a wheelchair for 3yrs. At the time of my accident my daughter was 10months old. I had family to help but its amazing how children adjust to dealing with a chair. She is a handful. She is four now and even though there are times where it's fusterating she became very helpful. Taking care of them gets better as you adjust to being in a chair. It may seem like a lot at first but its get easier.
Hope it helps,

[Mike (c4-5) & Lorena]

We have twin 4yo kids. It is not easy. I am a c4-5 quad and I use a loud voice and I always try to have the same rules for them. Kids love to push and see hoe far they can go. Keep yopur position and never give in. I say this because the little ones then respect your decision. Today, my two go everywhere with me because they knopw to listen to me. We can go out by ourselves and they liosten to me 100%. Ok maybe 95% or so. But initially, I was totally scared they would not listen to me. If I can do it, a quad, you should be great.

[wheeels]

It can be hard at times and not to bad at times I think that you are still new to your injury and would not have developed your new muscles and had enough time to explore you new world.

I have 2 kids one 3 and one 1 and have found that I have to adapt to them in different ways they love to sit on my lap and Cruz around.

It takes time to build up the strength to pick them up and put them down I have gone over more then once with the kids but nothing to serious.

The only time I really had a problem was when my son asked me to play soccer with him and was trying to pull me out of my chair to stand up. At that time he did not understand why dad could not stand no matter how hard he tried to get me to set up.

With time you will start to adapt and find things that will work well from you.

[Erin]

[b][font=Arial Black][size=3]
Hi I am a T-6 T-7 para. I have been in wheel chair for it will be 9 years in September 2008. I have 2 children they are both girls. Taylor 12 and Kali 8. Kali was 6 weeks old when I became a para. I had a tumbor on my spinalcord. The doctor removed it and when he did. I was never able to walk again. I spent 8 weeks in hospital for rehab and learned how to take care of my babies. After 8 weeks was up I finallly got to come home. Oh was I so very glad. My husband would bring the girls to see me every day we lived and hour away. That was so hard to see them leave each time. I carried Kali when she was lap every where I went probley until she was 4 or 5 years of age. She loved it so much anyway it can be done. I also babysit for some of my friends. My husband and I are planning on tring to have another baby but no luck yet anyway. I hope this helps Erin..

[C Herod]

I know it is hard for everyone right now, but let me tell you. I was 8 months pregnant when my husband was injured. Our daughter is now 15 months. She absolutely loves her daddy. He Has SCI at C6/C7, care accident about 1 1/2 Yrs ago. She loves to rides with him in his chair. If she gets hurt she wants her daddy. She's a daddy's girl. My husband struggles with the things that he can't do, and I always tell him to look at what he still can do. Be happy your alive to see them grow. I'm not saying that that helps him with it either. My husband can't pick her up from the ground or anything, but she has almost mastered climbing right up his legs and into his lap. I know it's a different life now, but they'll love you no matter what. We also have two sons 11 and 10. They are happy there dad is still around no matter what he can't do. I know you don't think so right now, but you will find new ways to do things, and it will get easier. My husbands hands and arms barely work, and he can do so many more things than he could at first. I know it sucks, and your adjusting right now, but just keep pushing and it will get easier over time. Good Luck.

Courtney20, on Mar 7 2008, 08:35 PM, said:

I'm a T12 and in a wheelchair.. It has only been 11 weeks since my car accident.. I have a 4 year old daughter and a 7 month old son.. How am I supposed to take care of them? I feel like I'm missing so much I could have been doing with them.. HELP!!!

[Quad65]

I'm a quad daddy and grandpa. My daughter was born 6 years after my wife and I were married and 19 years after my accident. Kids get used to the chair and your limitations and you get used to adapting to their needs. Yes, it is intimidating at first. I was scared sh!tless thinking about parenting before she was born. Would she listen to me and be obedient? Could I feed her, play with her, and a thousand other things. She's 24 now and a mother. It all seemed to work out somehow. She's a single mother and she and her daughter lived with us during her pregnancy and up until February of this year. I love my granddaughter with all my heart. She calls her grandparents 'Yammy' and 'Bampa'; gramma and grampa.

Just love 'em and take care of them the best you can. Don't fall into the trap of comparing yourself to other AB parents or beat yourself up about what you can't do. Think of all the ABs who are lousy parents and do your personal best.

[sunshinek]

Courtney20, on Mar 7 2008, 04:35 PM, said:

I'm a T12 and in a wheelchair.. It has only been 11 weeks since my car accident.. I have a 4 year old daughter and a 7 month old son.. How am I supposed to take care of them? I feel like I'm missing so much I could have been doing with them.. HELP!!!

I have a T4-T5 sci and have a 7 year old son. My son was 3 years old when I was injuried.
1. Pray and make sure they KNOW MOMMY LOVES THEM!!
2. do it don't think about what U can't do.
3. get help from family or friends
4. OR MAKE NEW friends/ family..

that worked for me. now YES i did have a LOT of help with my son at first.

NOw I see you do have your hands full. just take your time ok
LLLLLLLLLLLLOOOOOOOOOOOOOOOOVVVVVVVVVVVVVEEEEEEEEEEEEEE LOVE

[Cal86]

This is yet another post thats answered a ton of questions for me. I got similar fears that I wont be able to look after my boy. And its just me and him, not going to be easy

[butterflyloop]

I look at other peoples' children and realise how capable my kids are compared to other kids, we play "traffic lights^ when they walk beside my mobility scooter or chair .. if I say GREEN they can run, AMBER means walk or slow down and RED means stop. It means that from an early age they could go out safely with me but to them it's an exciting game!!! My kids appreciate the fact that although there are many things we can't do together I am always there to snuggle up on the sofa or bed with and read stories. Other children come to talk to me about their problems because their mums don't make time to just sit and listen. Parenting with a disability is really hard, each task that an able boded parent would do without thinking is a challenge but the sense of achievement I get is immense. It's not what I would have chosen but I have to admit that I look at my children who are sociable, well cared for and secure and I know that alot of their skills and attributes are down to the fact that I rose to the challenge. Yes I've had social workers try to muscle in as if purely having a disability automatically places them at risk but it's my home and my children and it's blindingly obvious that the kids are cared for so they leave! We shouldn't automatically feel like that.
It's tough, so tough and I feel for every mum and dad in this situation but hand on heart I can also say that your child/children are blessed when they have a parent who can prove their dedication and love to them because they keep getting up each day and having another go at it despite being in pain etc. It's great that there are forums like this - which I only just discovered- tht we can talk about such things. x

[Rachel_davis]

Hello
This is my first time on here.
I'm 24 and a single mum to a 3year old boy-I have an l4 injury that happened in an rta 6years ago.

I was terrified whilst pregnant-apart from the fear every parent has I was 20 and in a wheelchair.
The fear still has not gone but I think every parent is worried about the future and their kids (just maybe not as much as me!)

For around the first year of my sons life I had a mothers help every morning to help me out (I had a 2story local authority house and a very temrimental stairs lift) they helped me get me and baby down stairs and went up to change cot bedding ect.

I soon moved to a bungalow and reliesed quickly although it was very nice having help in-I could do it myself.

I have always mobilised with my son on my knee-when he was small he was in a sling and now (not as much) he sits on my knee.

He has adapted to me-he used to go to fridge and get milk and bottle-take it to me and I would fill it and he would return milk to fridge.
Now he is older he takes himself to bed at bedtime and when going out he gets himself in the car and puts his belt on.
If he sees me with a bag on my knee he will take it from me and carry it indoors-he opens doors automatically and never seems to stray too far although I still don't have the courage to venture
Out to a place where I see danger without an other adult present (places like the park with a big duck pond)

I notice he is far more indapendant than other children his age and I think this is good as he is aware of dangers ect that others his age may not.

I still have things like what other children will say when he goes to school yet to come but although it has been really hard i always seem to find a way around things.

[AliGibson]

Hi, I'm Ali and for a long time, I wondered how I would cope if I became a Mum one day......to cut a long story short, my daughter Sarah is 4 years old now and the experience of being a Mum is every bit as wonderful as I had hoped.

Wishing you all the best,

Ali