A spikey guide to disabled parenting.

Thanks to my husband Mark Jephcott who drew DisABLEd Positive Parent logo

I stand four foot 10 high! I am fragile looking, I have scars on both ankles, two scars on each knee, three scars on my right hip thigh, two on the other thigh, one on my right hand, one on my right elbow, one on my right shoulder! I am a patchwork quilt of excellent surgical needlework and master crafted plastic joints or patched up joints. All because I have had Juvenile arthritis / Stills disease since I was 15 months old.

My silly hand.

My legs.

I have spent large amounts of my time in hospital on chemo type drugs, on steroids since baby hood to date and had quirky medical treatments at times including a mermaid splint to try correct my valgus knees which is literally a plaster binding legs together in a mermaid tail! I have spent a year being home schooled as had to stay in traction flat on my back whilst I waited for ...I don't know what to happen, before they could replace my hip aged 11. I loved mainstream school, friends made me feel normal and still do today, school and learning took my mind off my pain. I loved the whole theme of school, dressing in a uniform that every one else had to wear so I didn't stand out, my mum put Velcro on my shirt buttons but no one could tell. We all had to look the same and I love and enjoy trying to do that today. I wear maxi dresses to cover my deformed joints and spine, I love make up and sometimes even a spot of fake tan. I despise NHS aids and try not to use sticks if possible, my Occupational therapists and Physio therapists despair because I should use sticks but I tend to drive every where, if I can not find a disabled parking spot near the shop then I don't go shopping that day, yes I am that vain ,that if I can not waddle to a shop without sticks then I would rather not be seen! A ridiculous thought my logical side of my mind screams at me but my parents worked hard at me being as normal and looking as normal as possible, shouting at me to exercise every hour on the hour so to be any different is tricky. I should wear splints but being a mum,adorning splints with scratchy Velcro or plastic are ridiculous and more disabling when trying to care for a baby or really when trying to do any thing in life, they even get in the way when trying to get your knickers up and down to go to the loo!

If I wore all of these every day like am supposed to, I would be rendered completely useless! Here is just a few that sit in my drug drawer!

 

Finally I am a disabled parent and I love it, it is better than the day I got my degree, better than the day I experienced walking after years of being wheelchair bound aged 16, as good as the day I got married to my husband who also has youth arthritis but his is called Psoriatic arthritis.

 

Our son is healthy, touch wood, he is not walking yet but can say nearly every word I present him with, he can count up to ten and he understands concepts such as let's put this car in a box.

 

We have struggled with the following parenting tasks:

Bathing baby - lifting baby in and out bath to his room when wet and slippy.

Playing with baby on floor.

Dressing baby as most baby clothing manufactures use dreaded poppers eg baby vests.

Putting baby in first car seat.

Taking baby out off first car seat

Throwing first car seat in skip, that nearly dislocated my husbands shoulders!

Buying new first stage car seat

Struggling to put baby this car seat

Struggling to do roll bar on first car seat

Struggling with fastening harness on first car seat

Deciding first car seat so difficult that not going out too often is for the best!

Getting Maxi Cosi Axis and finally able to go out with baby but struggling with new ness of seat for example belt straps are not easy to pull when seat is new.

Getting buggy light enough to lift

Getting buggy easy enough to fold.

Getting bottles we could hold easily in our hands.

Using a steriliser for the microwave.

Time management when a task that takes a well person one minuet takes us ten!

Us getting time to eat.

Us having energy to stay up in evening to eat.

Getting time to walk the dog

Getting time to drink a hot beverage

Tiredness

Pain

Having surgery and juggling parenting.

 

All the problems above, with the exception of the first stage car seat, have solutions that are simple, cheap or free and on the high street or the click of a mouse button! There are Facebook groups with other disabled parents who are itching to help and support. I will be posting about helpful websites, blogs and groups in the near future.

 

This is why I started this blog, to help give solutions to other creaky, bendy or wobbly parents questions and to let "parents to be" know that it's great news you are expecting your first baby! You can do it without the need of an entourage of carers and collection of NHS aids that will cost you a fortune!

 

I have had an ankle replacement recently.I had to leave my son and husband as my surgery is specialist due to tiny non developed joints and limbs but through our determination to manage I got out of hospital within three days! I am struggling at home, the husband is very busy but we keep smiling and we adore our son who has fun with sticker books on Mummy and Daddy's bed rather than on the floor!

This blog is written for all parents, a place to share experiences and ideas whether physically disabled or not and to help a future generation of parents with disabilities.

If I didnt adopt being open to suggestions then my able bodied friend who might not have been listened to when she told me about the cotton baby grows with a zip aka Zippysuits! I didn't find out about these, she did. If it hadnt been for a friend with EDS I would not have gotten to know this group of great parents with fabulous ideas. It goes to show with a little less moaning behind closed doors, getting our trials and tribulations out there to all, we can all start to help one another learn. Hopefully together in this journey a "Spikey guide to disabled parenting" can be created :)

Having a child is the best thing to happen to any one but having a child when you have a disability is such a miracle and such happiness that all the difficulties seem unimportant and you just get on with parenthood and struggle in your own way like every other parent on this planet.

Me with son, and my "Canine Partner" Yasmin.

 

 

 

 

 

 

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