Not Walking at 2/12 HELP

[Gailygee]

Hi everyone , I am new and was hoping for advice and a chat. I am a Mum of one son who is now 2 1/2. He was premature (34 weeks) and the paediatrician says he is showing signs of mild diplegia, He is not walking unaided yet but can walk with a walker and holding my hands, with great encouragement he can manage a couple of steps on his own. He is seeing a Physio but frankly she isnt very helpful. I was wondering if anyone else has been through ar going through the same. It is heartbreaking for him and me. It all feels very lonely as I cant face getting together with other mums whos babies are walking. Any advice or tips?

Gail

Hi Gail, really sorry you and your son are having a difficult time, am not in your situation, but was wondering why you feel that you can't face getting together wiht mums whose Baby's can walk?

HI thanks for your message, I know it sounds silly but I can't help comparing them and I always seem to be Defending my little boy for why he is not walking. Tend to feel a bit of an outcast - perhaps its me being silly!

(((((((((Gail)))))))))))

I'm sorry to hear that your son his having developmental problems. Please ignore the baby olympics. Mothers who show off about their children's development are usually insecure.

My little boy couldnt manage more than a couple of steps before he was well over two year old. He had orthopedic problems which delayed his walking. He started physio at two years old and was discharged at three and half years old. At the age of five he can run and walk quite happily. We are still under the local child development centre because my son's fine motor skills and co ordination are poor.

I remember feeling isolated just like you.
People used to give me all kinds of stupid well meaning advice and it used to be hard not punch them. I used to get quite angry when people assumed that my son had learning difficulties. I think that your feelings are understandable.

I don't know know much about cerabral palsy, but it took us at least 6 months of doing physio before we noticed an improvement with Andrew. Physio with a toddler is hard, especially as two year olds can be very reistant. It can be hard for a parent to progress because you are with your child all the time.

I am sorry that I've got no advice.

I don't think you are silly for defending your little boy. I am exactly the same. Admitally my son can walk now, but now I defending my because he cannot control a pencil.

please ignore the people that compare children...all children are different and unique in their own way, and will have their own little way of making you smile.

i have been in your position- i have a dd(now 6)who was born at 33 weeks and has cp diplegia, she didn't walk until she was nearly 4....and yes i found myself staying in more than other mums but i really concentrated on the things she could do and made up fun games to play with her to try and do more physio-hard work but it does pay off in the end.

have you thought about playgroup/pre-school yet??
you really need to start the ball rolling now if you think your child is going to need a little extra help-your child is entitled to play with his peers without struggling along.(should you want him to ,that is)

please leave a meesage if you want to chat about anything

take care of yourselves xxxx

HI Gailygee.

My ds has mnay problems and we have been told that he may neevr walk however we persist to go his exerices with him every day.YOu do need to persist but if you feel as though the physio isnt much good could you ask to see another maybe?

Ive not got any specific advise but I just wanted to say that I too, found myself distancing myself from other mums with babies the same age as my son as it was too painful and it still is now. It is a normal reaction.

It sounds like hes doing great though with managing a few steps and Im sure that this will progress and progress.

It is isolating having a child that it is any way different. Do you have any childless friends you can spend time with or close friends who are mothers who you can see one on one? Also have you been offered any groups for children with mobility problems? You can meet other parents in the same situation as yourself which can really help. Ask your OT/physio.

Hi Gailygee, i know exactly how you feel as i have had this with DD, she,s 3 soon and has hemiplegia to her left side.

I stopped going to mother and baby classes as i used to get upset at seeing the other baby,s doing things when i knew that dd couldnt do it so you are not alone in thinking this way, the way i thought about it was that it would do me more harm going than not because i used to get so upset afterwards.

DD,s physio hasnt been much help either tbh, im about to phone her to kick off over dd,s lack of physio as her paed said the other day that she should be having some.

please keep posting, there are a few of us on here with children with various forms of CP.

Hugs

Jen
xx

(((Gail)))you are not being silly at all and it is very normal to defend ones child, thing is, no matter if the child is perfectly healthy or if there is some problem, no 2 are the same and well, no use comparing them anyway.
Are people making comments then about your lil one?

Hi Gailygee, sorry you feel so bad.

Walking with a walker at 2 1/2 is pretty good for a child with diplegia, and if your son is starting to take steps, he will probably carry on making progress.

Could you talk to your physio about why you dont find her helpful? Is it because she doesnt see you very often?

The trouble with children your sons age whether SN or not, is that they dont like to be directed! If a child has the motivation to walk, IME they will, but the physio needs to monitor his muscle tone and range of movement so that he doesnt develop any tightness or deformities.

Everyone gets hung up on frequency of input, and on having the right exercises. its almost impossible to "exercise" a 2 year old. He needs a balance of stimulation, and his walking will progress better if he is cognitively stimulated as well, so the best thing would be to take him to toddler groups etc, where seeing the other children moving around will motivate him to keep up with them.

Thats going to be the hard part for you as the other Mums will almost certainly ask questions. Do you feel up to that?

Jenk - I dont know your situation and your physio may well be crap, but please dont bollock her because the paed says you should have more. Most paeds wouldnt know how much input was appropriate, and they are notorious for passing the buck by saying more physio when they know they cant offer anything themselves.

Mind you, i prefer it when someone comes out and asks why they cant have more, although in an ideal world you and your physio would discuss the frequncy of input when you set goals together. Some professionals avoid discussing things like that - ATEOTD theres no hard and fast rule on how much a child needs, as it will vary depending on so many factors.

Ill shut up now!

My ds (dyspraxic) went to a great sort of babygym/tumbletots organised by the OT & physio services specifically and exclusively for children with mobility difficulties. They included children with CP, brain damage due to illness, Downs syndrome, genetic syndromes, all sorts of things. And sometimes it was such a relief to be with people for whom a child with something wrong was totally normal.

Gail, just thought of somehting else, but, as far as I know all Wacky warehouses offer special sessions for sn children, that might be something to consider...

Posted: Wed Jan 24, 2007 10:05 am Post subject:

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Hi everyone, thank you so much for taking the time to respond to my message. I have been really touched and it is so nice to hear from other people who are going through similar things, its amazing how much better it makes you feel. I think that Leo (my little boy) needs some confidence, I put him down yesterday and he just stood there on his own for about a minute! I was amazed then he looked at me realized I wasn't holding him and panicked, so I think i need to build up his confidence.

Our phisio seems to be more interested in what Leo is eating or sleeping like than giving us advice or wathcing what he is doing.

Leo does go to Nursery 2 mornings a week which i think hepls as he is around other children and hopefully one day he will copy them.

Thanks again everyone it is so nice to know I'm not alone.

Gail