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Advice needed from ms sufferers with kids please.

I have RR MS & came off tysabri to try for a child. After six months it all went horribly wrong & I ended up in PDRU in the southern general in Glasgow for 6 wks. I knew the risks of coming off treatment but it all backfired! Been back on tysabri for over a year and no relapses. We know that coming off treatment again is not an option. As a child of our own is no longer possible we decided to try to adopt. I passed my medical but have told that we may struggle to get a placement with a child due to my ms. We really need some advise from parents about their experience of having ms & raising a child. I don’t know anyone else in our situation & need some ideas on what we can say to demonstrate to social work a person with ms can parent a child. Everyone from my consultant to my ms nurse & physio say there is no reason why I shouldn’t be be able to adopt. To hear from anyone with ms that has adopted would of course be fantastic as well. Any ideas would be gratefully received! Thank you for reading this post. Lindsay

Hi Lindsay

I have RRMS and I was diagnosed last year when my children were 1 and 5yrs old. To be honest it is SO subjective and also depends so much on your own situation. I don’t have any family help and my husband works long hours so nothing has changed for me, I feel knackered and I can’t walk very far so we use the car more. I’m fairly lucky in that I lead a pretty normal life and having the kids has made me just get on with it, you don’t get a day in bed when you’re feeling crap, you just have to get on with it, still up at 5am with my toddler and up doing reading with the older one in the evening, there is no rest! They come to the hospital and GP with me, the older one likes to watch me do my injections!

I can’t see why MS should be a huge barrier, I suppose it depends on how your health is, but even a prognosis for MS cannot be accurate, you could go downhill tomorrow or be fine for many years to come. How is your general health just now? are your abilities affected at all? How would you feel about having zero down time? Do you have a good support network? I think if you had some contingency in place (i.e. relatives, partner etc willing to take over your duties etc) then thats the best you could say.

It is very frustrating that MS could stand in the way of you adopting, I hope your case is successful. Good luck!

Hi, I have spms and renal problems and we have adopted three chldren. My ms wasn’t actually diagnosed at the time of our medicals but I had renal problems and some ms symptoms. our local council decided that our support network(family,friends) was good and the medical adviser and my doctors saw no problems. As my symptoms progressed I am not saying life is always easy, but our children are getting older (the youngest is 7). adopting children is never an easy ride, it is a long, sometimes frustratingly slow process and tons of extremely intrusive questions - but when you get to the end and have a longed for child placed with you - then it is all worth while. Our experience with our adoption team may be different as I know all councils have different ways of working. Good luck! If you need any questions answered please feel free to pm me x Lilbill x

Hiya Lindsay

I cant comment re adoption process but I can tell you that I am a single Mum to 4 wonderful kids so it IS possible

Blooming hard work-no denying that! But I believe its mostly in the (my!) attitude. One very small thing about your post-kids pick up on words that we all use, that we perhaps dont even recognise the message that we are emmitting. I refer to when u say ‘MS sufferers’. Whilst I appreciate this is how some folk see it (and I understand why) its not going to be helpful if you are trying to show that you can cope with kids. I hope you understand what I am saying! Similarly-I try to avoid telling my kids ‘not’ to do something-I find its much more encouraging to suggest a positive. eg Dont make a mess! I would say-have fun and enjoy! Because in the big wide world what is ‘a mess?’…

Good luck with the adoption process!

Ellie xxx

PS I note u must be in/near Glasgow-a few of us are hoping to meet there in April-can let u know details once they are confirmed if you want?

i think having a child whist having ms is challenging but it makes me get on with life for my daughter. i work full time and have a 2year old. I have a very lovely and very hands on hubby who is wonderfull and steps in when i am exhusted. My sister lives fairly close to us and helps out when she can.

I think it is possible to be a great mum even with this god awful disease. I think we give a different way of parenting because yes you do have to plan things slightly round your ms but I don’t let it take over.

My hubby was adopted when he was 2 months old and his parents were amazing. Unfortunely the guidelines have really tighted up since then and I don’t think they would been anle to adopt him now because his dad was slightly overweight and smoked. neither of these things effected his abllty to be a great dad.

I do know that you have to jump through hoops to adopt now and its a lengthy process but having ms shouldn’t go against you. What about fostering in the mean time that would look good and prove to the doubters that you were serious.

good luck hun and go for it!!!

Definitely can be a mom with MS…

Mine started in pregnancy, and i was diagnosed a month before my little boy was born (Feb this year!) Im a first time Mom, married, living with hubby (of course) and have a 3 month old baby…

Yes, its scary at first… Yes its challenging, but for all the rewards that children bring you get through it!

Like another person says…a support network would be great. I have hubby, but we dont have the luxury of family close by… theyre all at least 3 hours drive away. But there is also plenty of support out there. There is a really awesome group called Home Start who are a voluntary organisation who help families too::

ABOUT HOMESTART -

We help to increase the confidence and independence of families by:

  • Visiting families in their own homes to offer support, friendship and practical assistance
  • Reassuring parents that their childcare problems are not unusual or unique
  • Encouraging parents’ strengths and emotional well-being for the ultimate benefit of their children
  • Trying to get the fun back into family life

Our volunteers, who have parenting experience themselves, can offer:

  • Precious time for listening and talking
  • Help with the children
  • A break for parents
  • Practical help and reassurance
  • A chance to meet other parents in similar situations
  • Support to use local services and resources

Parents ask for Home-Start’s help for all sorts of reasons:

  • They may feel isolated in their community, have no family nearby and be struggling to make friends
  • They may be finding it hard to cope because of their own or a child’s physical or mental illness
  • They may have been hit hard by the death of a loved one
  • They may be really struggling the with emotional and physical demands of having twins or triplets - perhaps born into an already large family

I agree about the can’t stop when you have kids much as you want to. One of the docs I saw couldn’t understand why I was not completely off my feet, I don’t have any choice, as a mum you have to get up and go however you feel. I’m always out with my baby because being at groups provides entertainment for her and therefore time when I can sit down on my own, although the effort of going often leaves me wiped out and in bed when she naps. I’ve got 3 and a step daughter, ages 10, 8, 6 and 1. Its very busy in our house. But they learn to be independent, they wash up after dinner, make their own beds, fetch and carry if I need it, lay the table, pack their bags for school and for going to their dads for the weekend. Although this morning I did get cross they hadn’t cleaned their shoes.

Thank you so much for your replies. We had said to social work that we would like to adopt a pre school. We were essentially told our last visit from our social worker that nearly everyone that wants to adopt want that age and essentially they would be chosen as parents before us due to my ms. They only way we could possibly become adoptive parents is if we raise the age limit we would be willing to go to, ie a child that is at school. Now to me that’s descrimanation!

Hi, I have 2 wonderful kids aged 8 and 9. It was hard when they were little but I think it would have been even without ms. My husbands family live nearby but they offer no help or support and my father-in-law even said he did not want to look aftert them. He is a retired gp! You find ways around things and someone else’s big problem seems like a little one to you. My kids are brilliant and if I have a clumsy day will just say, that’ll be the m and s! I think they think it’s something to to with where I shop! Good luck with the adoption, one of my flat mates, who I have been friends with for nearly 20 years adopted a little girl. It was only when I was dx that she told me she has been living with ms for 23 years. She is one of my best friends and I had not a clue Good luck with the adoption, I hope it goes well Chis

Hello, I agree with you, it is discrimination but probably legal. I’m 44 and mum to a beautiful 5 year old. It took me more than 10 years and quite a lot of fighting to have her as her dad has some issues that meant that our GP wouldn’t sign us off for IVF. Well we swapped GPs and I had her at 39, now I find I’m alone (which I did predict) and I have MS.(which I didn’t). My experience of so desparately longing for a child was so profound and I really feel for you and send you all the very very best for success. I remember at one point sitting with the doctor who said that he couldn’t just let anyone off the street have a baby. When I pointed out that people off the street have many many babies every day he didn’t shift. My main concern for you is to stay calm. I don’t know how old you are but give yourself time. These things take forever and the authorities have NO grasp of how powerful, even primal, the desire to be a mum can be. Take it easy and while I agree that it’s not fair to descriminate, I would advise you to be very careful before you protest, be steady as otherwise it could count against you and you will regret that. This is going to be a long, hard process, you MUST take care of yourself or you will endager your health. Fostering is a great idea, you never know you might hook up with an 8 year old that you click with and what a joy that would be. Lots of love and best wishes to you. Lucy x

I am a single mum of a 13 year old and was diagnosed when she was 4. I am now quite badly affected by the MS and have a carer come in 5 days a week to help me do the house work, shopping, cook meals etc. I have to use a scooter to get around and my daughter probably does more than a lot of kids her age. She also has to fend for herself more than I would like. I don’t have any other family support (parents are dead and I don’t have siblings). To be honest, if I was thinking of adopting I am sure that no one would let me… Which is odd because at the same time everyone tells me what a brilliant mum I am and it has never been mentioned that she would be better off in care or anything.

Seems to be a bit of a double standard when it comes to adoption. Without knowing how the MS is affecting you it is very hard to judge how the adoption assessment might go. And of course you might be relatively well at present and then be hit with a whammy of a relapse and end up with significant disabilities. Who knows? But then again, you could be a person without any pre-existing health problems, adopt a child and get hit by a bus and end up with significant disabilities. Who knows?

Can you “borrow” some nieces or nephews or friend’s kids on a regular basis to see how you can manage and keep a log book to show the adoption people? And keep collecting references from Drs and neuros and OT etc. And I do agree with Ellie that perhaps changing “MS sufferer” to a “person with MS” would be a good idea. It gives a more positive spin on things and gives others the idea that MS is only a part of you and not the dominating aspect.

I know this sounds a bit pessimistic but I know that my daughter is loved to bits, loves me heaps and we have a lot of fun in spite of everything. She is doing well at school, has lots of friends and is growing up to be a kind, compassionate and resilient young woman. Life is not always perfect but that doesn’t mean kids are neccessarily worse off for that.

All the best and I hope you are successful,

Belinda

I thi k it is selfish to adopt when you have MS, esp if it’s a very progressive form. My parents adopted me when i was 14 months old. My adoptive mother had MS and my adoptive father had severe kidney disease. My mother was bedridden sometime wben I was 6 and my life was hell. I wasn’t strong enough to help her turn over in bed and she would cry and yell at me that I was hurting her. I was responsible for her, my brother and father - cooking, cleaning, laundry. By the time I was 9, my mother was dead and my father died when I was 11.