Mummy and Daddy with arthritis

Carrie77

Hi,

Ok so are there any parents out there who have arthritis like we do, every joint etc? We have an 8 mth old very healthy baby, we are learning at every step of the way as to what works and doesn't work, how to manage do things.

I had a bad experience at a mum and baby group where I carry my son differently to them because of my arthritis and one lady stood right next to me, and said to the another "She don't look safe does she". I left that group. I felt so different. I felt sick of finding it difficult to take my son out, took me ages to find an easy to use car seat for him, same with a highchair, even easy tags on nappies etc. It has been a lonely old process, there is no info out there from professionals, OTs have stood with me saying, not much we can offer to you! Big parental groups do not run anything on disability and parenting, there are no reviews of equipment out there with disabled people reviewing, sick of it, I feel so fed up by it all. So being a Psychologist rather than allow a spiral of depression or self pity I have decided its time I did something so no other parent has to feel alone like this and helpless.

I am in my infancy of developing a web site but have started a blog which I ask others to use, to comment, to suggest baby high st equipment that they found easy or tips. This can not continue to exist like this in this day and age. Unless a group of people change it though other parents will be asking for help and not getting a good lot of useful info.

http://disabledpositiveparent.blogspot.com/

Carrie

mig

What a time you are going through,babies are tiring when you are at your best,i cant offer any advise to you but will be thinking of you all and hope you find help soon.Mig

skezier

Hi Carrie,

Can't help you but really feel for you.

I think the woman who said that was so tack less if not rude but it might be worth going back maybe or to a different group if you have one?

The worst thing with this bone thing is it isolates you and thats not good for you in so many ways.

I so hope you will soon feel better and at least here your are not different and there are some mums who come in from time to time and they may well be able to help you.

I know Legs will but she isn't able to post for a min but she has a lot of experience with being a mum and having arthritis so hang in there you are not alone and someone will be able to help you.

Nice to meet you. Cris x

claircoult

Hi!

Just wanted to say you're not alone. Parenting with a disability is so challenging but there is help out there. Have you seen the Disabled Parents Network website? They have a helpline, publications and a forum where you can chat with other disabled parents. The Ricability website also has reviews of parenting equipment such as high chairs and pushchairs too.

All the best with your blog!

Clair

dorcas

Hi Carrie

I'm not able to contribute from first hand experience as I didn't 'get' arther until mid 40's... but I think what you''re doing is great!
........and I've no doubt it will help other parents too.

Some good suggestions from Clair..

Good luck! and I hope you get lots of support and encouragement.

Iris xx

valval

hi it hard enough to be a new parent with out having arther to contend with i can not help but wish you well and know others will be glad of the advice in the future val

stickywicket

Hi Carrie77,

I’ve not seen you around before so welcome here from me.

If both of you parents have arthritis that must be tough, especially now that your baby is getting bigger, stronger and heavier but not yet able to walk. I did the arthritic Mum thing 40 & 37 years ago but luckily my husband was/is fit and strong which made a big difference.

The holding thing? Oh yes! I still remember every time I picked mine up (fold the baby over your forearm and haul) my mother-in-law would, when she was around, instinctively reach out to protect the baby. The thing is you are different, you have to do things differently and you have to keep inventing new ways of doing the same thing. And they keep growing bigger and stronger and, although everyone else will make allowances for your arthritis, your own toddlers will exploit their advantage to the full. Hey, it’s worth it though. (And you get your own back once the grandchildren arrive.)

I’m not quite sure how baby equipment could be made more disabled-parent friendly though as everyone is disabled in their own way. You’ve only to go into a disabled loo or hotel room to work that one out. I wish you luck though.

L1985

Hi

I just wanted to say I can sympathies I have a 11 month old and a 5 year old and have recently been diagnosed the RA.

lulu xxx

Carrie77

Thanks every one for your kind words.

I am constantly learning with Christopher but he is learning with me, he is so good, he knows to try and lift his head and legs up so I can scoop him out of his cot, he puts his arms in his t-shirt arm holes himself, he is such a sweetheart. It is soul destroying when someone says something unkind because every parent just wants to be the best for their child, I try so hard, I never let him see me in pain, husband does the same so when someone says something like that you do feel a bit floored. Still am back up from the floor, I always bounce back really, heck he'll be toddling and at Play school before I know it and then there will be a whole new set of fun and games hahaha.

Really appreciate every ones support x

valval

to tell the truth so long as you love him every thing else will be normal to him. i do hate it when you see a mother sat there while her children do the choores there are some who can not help it they have no choice. but some well could make more effort to give there children a normal child hood i know you will never do such a thing just by what you have posted you are a carring person who is going into it with your eyes open val

weejean

Hi Carrie

I have had OA in every joint since childhood, when I was 13 my doctors advised me that I should not have any children as it could damage my hips and I would alsoo find it difficult to cope with a baby/toddler. I got married at 18 and had my son when I was 19. Unfortunately my marriage ended just as my son was born and the father didnt want to take a part in parenting so I was forced to become a single Mum. I found that I managed to adapt and cared for my baby in my own unique way. I felt isolated from other young Mums as I did things different to them but it never did my son any harm and like your baby, he seemed to adapt to the way I did things because of my disabilities. As my son grew things got easier as he got more independant, I often felt guilty that there were a lot of physical things that I couldnt do with my son but he didnt miss out as family members did these things with him (playing football, going long walks in the country, taking part in the mummy race at sports day etc). I wont ramble on all for much longer but I am now 38 and my son is 18, he is a fit and healthy young man and is starting University next month. I feel that although I couldnt physically do a lot with him I did spend a lot of time reading, writing, doing crafts etc and I think that made up for the other stuff. I also think that my son is a very caring and understanding person who will gladly help anyone when he can and I like to believe that living with a disabled parent has made him that way. It is great that you are raising awareness for disabled parents and trying to help them. Well done you!! Your baby will grow into a strong, intelligent individual as you are being such a good Mum to him.

frogmorton

Lovely to meet you Carrie

Please do keep posting this is definitely the site for you...you will only find support here and ideas to help.

I was lucky because l had few problems when mine were really teeny, but by the time they were 5 and 8 l was having back surgery and being helped by them (was a single parent by then - not now though).

What l will say is that people do it and they do it WELL! This tiny baby stage is so short and before you know it your boy will be on his feet and much more independant than his peers. How can that be a bad thing?

Anyway will shut up for now...just hope you stay and bring your input to the forum too.

LOve

Toni xx

stickywicket

Hi again, Carrie,

Another recent post on one of these forums reminded me of a woman I used to know. We were both part of the 130 group, ACs original group for young arthritics. She wrote a book with lots of useful info for people of any age with arthritis but aimed mainly at those under 30. I know she updated most of it before she died a couple of years ago with a view to putting the whole book online. After her death, her brother did put the whole book online but without updating the remaining chapters. If you're interested just PM me and I'll give you the URL. There are some tips on how to deal with babies and small children.

Carrie77

Thanks so much guys, you have no idea how nice this is to hear. I have well friends but they are all chasing careers and so don't have kids of their own and are not very interested in being in any child's company, I guess I can understand in a way, equally I am the Psychologist of the group, they all come to me with their problems and don't really think I have any or any difficulties.

I would love to have any info stickywicket, that would be helpful to me. If any one can offer ideas on the blog that would be fab. I hope to eventually establish a web site. I am trying to get mummies and daddies on board who are deaf or have MS or Muscular Dystrophy etc as obviously all disabilities are very different, even the same disability can present differently in different people. My hubby has no grip, his hands are very deformed, mine are actually very small and child like but I have good grip. He is very tall, I am very petite so he can reach all high kitchen cupboards and I can't etc. The more input parents put in hopefully the better resource of help. Eventually I intend to set up a web site and even hope to have a sell your items section, such as someone on the blog mentioned an excellent door bouncer which I'm off to look at and probably buy so will then be selling and Bumbo seats, wow what a godsend to creaky mummies those are, that will be on the site too, am sure parents will have their own load of stuff they would like to shift.

Things have to change, I have only now, 8 months on, found parent and disability sites, no one gave me any info, no midwives, no doctors, shocking. So eventually when a site is set up I am targeting Midwives etc.

So many thanks for letting me feel normal really, the story about the 18 yr old boy now going to uni was so good to hear.

Will be on here regularly x

flowerpot

Hi Carrie, I can't offer any real advise as I am not a parent myself, but have friends with kids from 8 weeks to 16 and I can really empathise with your situation, everything from trying to open a blasted pack of wet wipes while changing a nappy, to putting pretty hair bobbles in becomes such a challenge. The best thing is as others have said, children learn to accept so much quicker than adults, so while I can not thread tiny beads on to string any more to make bracelets, I can still paint with a chunky paintbrush, they just accept one person does one thing, and some else does the other things.

I think your site is a brilliant idea, I have a friend with MS and a 3 year old so I will be sending him to your blog, as he has found it really difficult and suffered some of the disapproving comments and looks also.


Best of Luck

stickywicket

I've PMd you the URL for Jill's book. Hope it's of some use. I must confess I often resorted to bribery and corruption in the toddler years.

mermaid

Hi there,

I was very moved by your post. You are both doing a great job and your son will undoubtedly grow up to be a very caring young man, as my 3 children have.
I was diagnosed with RA 3 months after the birth of our first son and it was very aggressive and destructive from the start. Luckily my husband was fit, although very busy with work and doing very long hours away from home.
I also had lots of comments about the way I handled our son (also Chris). He was just great and instinctively knew where to hold on to me.
Your idea for support for disabled parents is great, especially education of midwives and I will tell my younger RA parents about the link. My eldest son is now 39 years old, has AS since age 19, but copes amazingly well.
He says he learnt it from me!
Take good care all of you, you will be fine and a great family.
xx

frogmorton

Hi Carrie

good to see you so positive! fantastic post and great for all new parents. Hope you have seen MERMAID (may l welcome you too Mermaid?) has been there too. So more useful info to pass back and forwards.

Mermaid it is so often that RA is diagnosed just post birth you will find a lot of the women with RA were diagnosed similar time to yourself.

I do hope you will find this forum as great as l have

Love

Toni xx

Ankyspond

I read your post with tears in my eyes, the ignorance of people is disgusting the woman whonmade the comment should be ashamed and hope she is never struck down with anything like arthritis.

Although I would have had AS when my children were small I hadn't been diagnosed, I remember carrying them perched on my side a lot. Can't really help with that as mine are all now teenagers but I wish you well. Xx

theresa4

HI
I was a mum of 4 quite young and my RA started when myyoungest was 11 so it wasnt as hardfor me in that respect. My issue is that I have to lean on my kids more than I would like to clean etc as I just cant do it. I take over when I have a steroid for those few weeks but it never feels enough.
I have to hold my granddaughter differently and worry about dropping her but now shes walking its not so hard. I tend to pick up kids with my forearms as my wrists and fingers give out too easily. Then get them onto my hip as I can steady them on one side. Im disgusted that someone could comment about the way you held your child how ignorant and rude. People know me as a mother aunt and friend and that I used to work with children with behavioural difficulties so no one would dare challenge me as I would shoot them down very quickly. Im a big softyand melt at the first bit of confrontation generally but noone can accuse me of not caring for kids or start on my kids or I flip.
A good friend of mine has MS and had a little girl at the age of 40. He loves her so much and is her main carer as her mum works whilst he was signed off his job years ago due to his MS. He has a Personal assistant who helps him part time to enable him to live his life and care for his child but also to ensure her safety (at his request) his in laws also help him to care for her so he can rest when he needs to.
Shes learning that daddy cant run or move quickly and does play to his disability now shes 3 and will go out of reach when she is being a menace long enough for him to have forgotten why hes cxhasing her by the time he reaches her. He plans to explain the dangers of this though.
You dont need anyone elses approval to do what you are doing and explain why you do things differently. If it works for you then its right if your child is safe its fine dont let soem ignorant women isolate you. Go to another group you will find some decent parents who will support you and make new friends.
My grandmother always said to me when I had kids, people will say your too young ignore them you are a brilliant attentive mother (i was 17 when I had my first). I ran my first playgroup at 18.
she told me people will offer you advice, you take what you like, discard what you dont and mull over what you are not sure about and do either when you have decided. It was great advice and I never second guessed myself when it came to my kids. They are all healthy and happy despite all the things I did wrong according to the advice I was offered and discarded. I dont believe anyone has written THE rule book on bringing kids up the right way as yet.
Good luck and enjoy your child.
Theresa xx