[font=Georgia][size=4]Hello everyone! My name is Amy, I'm 28 years old and a mother of two. I've been with my husband, Will, for close to 12 years. We live in upstate NY, just outside of Albany. While I do not have an SCI, I have a severely limiting physical disability called Spinal Muscular Atrophy type I. I don't know of any other parents with disabilities that are quite as limiting as mine and I was hoping to find some support here. Feel free to ask me anything!

-Amy

I am a single father with full custody of 4 year old twin girls. I am a complete para. I get very little outside help, bu tmy mother does help with shopping and transportation. I'm sure you can do it , Amy. My daughters are my reason for surviving and thriving. I get no help from their mother. She's not even in the picture. You got an able bodied husband so , you should be fine.

I also have 2 children, a boy and a girl ( 5 and under). My kids are totally unphased by my wheelchair etc. In fact they love getting rides etc. The plus side is that they are very tollerant of individuals with differing disabilities who they come across. I also observe them playing with dolls and transformers and many will have wheelchairs or some mobility aid in their version of the game!

Kids adapt to their surroundings ~ whatever they may be! Other people, strangers usually tend to comment about how well behaved my kiddies are. Usually they do this with much shock in their voices, like my parenting skills are dependent upon my ability to walk to some people! LOL.. Today someone commented about how good my littlest one is 'walking close to' my chair!..Not sure if they were actually surprised by it or looking for something to say!

anyway, sorry to ramble on!..must go to bed...lol

I have also been with my husband over 12 years ( married for 6).

Take care,

What a great response! I was going through a rather dark period a few weeks ago, letting society's definition of a mother affect my perception of myself way too much. My daughter just turned 4 in Sep. and my son turns 2 on Nov. 30. Olivia is often complimented on her manners and such. Do you ever feel judged for your choice in becoming a mom? I feel like people automatically assume my children are my slaves while in reality I'd never ask anything more than an able bodied mama would.

Hi again

I think that as parents who happen to have disabilities too, we are sometimes very harsh on ourselves. I am anyway. I am my own worse critic and have always been very eager to protect my children from the negative aspects of my disability. Sure they know It isn;t always easy, but I don't discuss my pain or such in front of them and try not to allow outward signs of it to dominate our days. This isn't really to do with how I want my disability to be perceived but the fact I want my kids to have good memories of me.

I remember a family member who had chronic pain whilst I was growing up, my only memories of her was her always being to ill do do anything...being in too much pain. Whilst I have my limits ( due to pain and sometimes not being able to do something physically) I trust my kiddies will remember how we make fun things to overcome them ( on the whole!) and hope I don't exhibit too many grumbles vocally. I want them to be kids.

I have a genetic condition which means that multiple joints dislocate easily. As a child and young adult the dislocations would be when I was undertaking Gymnastics/ballet and the like and were put down to the fact I was competeing at a high level in these areas and straining a young body. As I got older I had many more and with less trauma causing them. I avoided hospital/drs and reset them mostly myself..unless I had a fracture too. This was b/c I had many many people ask if I was being abused and also b/c I wanted to become a Nurse ( I did do this!)

During and after my first pregnancy I started experiencing loss of sensation and multiple dislocations ( every day) on very minimal trauma ( none!). It was put down to my very traumatic labour and suggested that I would improve when my hormones settled. It never did and got worse. They actually denied my hip was dislocating at all til I was seen by a specialist a couple of years later.

some months later I was involved in an accident whereby I was hit in a carpark by a car moving at slow speed. I was walking across the carpark. I had xrays of my hip and pelvis since my leg was rotated and complained of back pain but they were more concerned about my hip!

Over the next few months I was loosing bladder control ( as in not able to feel when I needed to go) and very constipated and unable to pass stool. I also had tingling and numbness which came and went and I seriously thonk my then GP etc felt it was ddue to my postnatal depression.

My kids are 18 mons apart and after my second child was born things got very very desperate. I felt like my back was unstacking and my dislocatiopns spread all over. My hips were very unstable and I was using crutches. My GP put it all down top my depression coupled with SPD which is loosening of the pelvis in pregnancy! the penny never dropped even though it was widespread problems. It all came to a head when I was examined by an Ortho who should have spotted my connective tissue disorder, but didn't. I was examined and the theory is this examination coupled with the meet with the car mentioned above damaged my spine further and well the rest is history. It is clear that I was having problems intimitently, but that the examination and my body's hyperextendability made it a permanant and worsening feature. I have damage to my spinal cord loss of/altered sensation and neuropathies and paresthesia. I am usually affected from my pelvis down, but have times when it is higher due to my back being unstable. I can wake up with less function etc.


I am going into all of this because even though I have always had my condition which led to my situation now, I was unaware and so I think I was fortunate in that I didn't have that worry when I was pregnant. I just thought that I was falling apart and going insane. Howebver, I would still have chosen to be a parent I am sure, b/c they are my everything! They are amazing little people. I do get a lot of people being very judgemental and supposing that I am selfish for having a child,they DO often think that I have my children to fetch and carry for me..However, the opposite is true! I am a cart horse at times carrying their belongings lol and care for them as any other mother.

I DO think that my hubby and I do treat our kids as little people and often expect a lot from them, in terms of manners and behaviour and such, but this is because we have those standards and would have anyway. It has nothing to do with my disability.

I do know that I have periods of time whereby I feel anxious and like the whole world is judging my parenting skills based purely upon my ability to walk. I am not stupid in that I do know tht I have my limitations, as do my children! but this is true of every parent and my children and I are very close,huggy and get around obstacles. As I said my children do not recall me as able bodied. Kids do adapt. One example is altho I would love to have picked them up, it has been difficult to do due to my dislocations etc and so they have always come and clambered over me to get a hug etc.

Most strangers are taken aback by my kids demeanour and manners etc. I used to be very sensitive and think that they would not comment or even think about this if I was AB but I now choose to see it as a compliment. It is true that they do have to be good asd if they ran off when we were out it wouldbe difficult/dangerous! I used to just think that they were doubting my ability to parent.

By far the most annoying thing from strangers re my kiddies is the disbelief that they are mine and the questions I have had as to how I have sex and how I could have got pregnant! It is scary that in the age we live in people are so ignorant. Being a qualified nurse I suppose I didn't have the same blinkers ( altho I had others).

The only really difficult part of all of this in terms of FOR the children to cope with is the time I had to spend away from them having some kind of rehab. I did a very short stint, but even today my son is very clingy to me and sometimes wakes in the night worried that I am not at home.

Lastly, I often worry that my kiddies will not wish to be seen with me b/c of the chair etc. I am sure this may come when they are older, but as yet they are more than happy with the situation. It is all they know and I know that growing up in this scenario will give them fabulous skills. They are so tolerent of kiddies with disabilities at school/nursery and in general and they are able to think of alternative answers to live's situations ( such as access etc) which other kids are not even aware of. Ultimately, they are happy and know they are loved!

Sorry this is so long!! Some of this should be in the 'our story' thread!

Take care,

I greatly appreciate the opportunity to read your story, kewlcatkez. Thanks. I'm humbled.

My son is grown up now (just busted up with his first serious girlfriend) and reflecting back I suspect I was a bit too keen to protect him from "becoming my slave". It'd be a relief to get him to do just about anything - but that's a parent/child thing. He's very understanding in spotting the needs of others with disabilities.

Re the fear that kids may not want to be seen with a w/chr parent - wow, I can relate to that fear. But in my life it never happened. I was the problem wondering that because it never seemed to enter my son's head.

Thanks again for your story - there are some wonderful people on this forum and I am richer for it.

Hi Nomis,

Yes, there definitely are! and I am very touched that you consider me to be one of them.

To be honest I was unsure of joining the site. You see I am the worst case scenario in the EDS world ( the dislocations are common to EDS folks but the paralysis/paresthesia/neuropathies are reserved for the unlucky few!) and yet I am not the classic paralysis patient.

I am sure that I should have put all of this in the stories thread, but I am not good at conveying what happened to me ~ yet its easier when providing background info, somehow!

Thank you for your reply, I really do appreciate it and I have found your posts to be very wise, humbling and comforting so I take it as a huge compliment.


thanks again,

Kind regards,

K

[New Here i would like to join this web site cvan u plz mail me back i'd appreciate it. And how much does it cost or is it free. samba_boots@hotmail.com Plz email me. Thank you Mary R.font=Arial Black] [/font][size=4]

Welcome both of you to the board.


It's free.
Mary is your last name boots?

Hello-

Well I am a child of a c4-5 Mother. I do not remember my Mom ever being able-bodied, as I was almost 3 years old when she was hurt, and my sister was 10 days old. We NEVER even knew any different growing up. It was just normal to us to have a mom in a chair. She always did everything she could to ease our load while gowing up. Granted we may have done things kids our age weren't, but we never knew any different. The amount of love we have for our Mom, just makes us want to participate even more in her life. And to top it all off we turned out pretty darn good! I'm 31 with 2 kids and my sisters 28 with 2 kids! Our kids don't even have a problem with their grandma being disabled. Kids adjust, and go with the flow. I don't think you have anything to worry about. Hope this helps!

[size=4][color=#3366FF] Hello my name is Mary R. i would like to know how you got on this site cause i would like to get on so i could help people if i can. I am a T-8 and have been a par for 20yrs. Please let me know. samba_boots@hotmail.com is my e-mail thank you.
Mary

No my lst name is Reopelle there is only one of me i am divorced for 8 yrs. Who am i talking to? I have 3 children. Could you please e-mail me? samba_boots@hotmail.com I would enjoy talking to you about anything. I been through a lot in 20yrs. Thank you Mary