no support for me or my son!

[SarahSuperMum]

Hi there. Im really struggling at the moment and need some friendly advice.

My son is 10 month old and has afew problems. He sees the physio for his movement and has an appointment coming up to see a neurologist along with some other things, he also has been refered to portage therapy.

Today we went for a check on his clicky hips. The physio noticed it at our first appointment (after months of me telling my health visitor we needed to see someone) she also said he has restricted movement in his leg and when she moves it theres a different feeling from both his legs (i dont exactly know what she means by this) but anyway i have a large "concerned" family so i told them that she was worried about ddh like it said on her referal letter and they all basically said shes talking rubbish and "keeping herself in a job"

Come to today and my boy had an xray to check for ddh and the consultant says the same as physio but said xray didnt show any signs of it "at the moment" so i came home as happy as anything until i got the "i told you so. Theyre just tryin to make up numbers" its the same with his portage therapy. I know my son isnt the same as other babies and its really getting to me that their support consists of telling me that these people are using him to make up numbers!!

Im not sure ive posted this in the right place am just really not sure how to handle this.

Thank you for reading! :)

Well I have no experience with the issues that your son has bit it sounds like you are getting him the help he needs.
To me it sounds like your family are trying, perhaps badly, to be reassuring. They are maybe just trying to help stop your worrying. How much more helpful would it be if they were all doom and gloom and "oh how awful" etc..

I would try not to worry too much about extended family. Concentrate on your immediate family. If it is really bothering you then you need to tell them that it upsets you that they appear to be brushing his problems aside. That you need to be able to talk to them about it without being made to feel like you're making it up. I would suspect they have no idea how much this bothers you.

Xyou will need to seek support and gains new "family" of people in same boat as you so Join the special needs. Board and seek out drop in Playgroups for special needs children there will be one locally .

Your family may be well meaning but no they won't necessarily get it.
Go find other parents who do.. Seek out others in same situation. They will help you survive ...

If there is no group ask portage worker to help you set up local coffee morning or group with other parents .

Thanks guys. I will speak to our "key worker" when i see her. Xxx

People often don't want to know that their beloved baby has a "condition". It may be that your family members are in denial because they don't want it to be true, because to admit there might be problems is too upsetting.

I can assure you (and any members of your family) that the NHS does not have time nor money to spend referring to "make up numbers". That;s such a ridiculous idea that I can't believe they are even convincing themselves.

Sarah You have my sympathy - my MIL refused to believe that my DD had asthma, in spite of seeing her struggle for breath on several occasions. I still have not got to the bottom of why she felt like this. She would brush it all off, 'well, she looks fine to me', 'she's not coughing now is she?' etc.

The most support I ever got from her was 'well, she'll have grown out of it by the time she's 7yo' - well, that was 10 years ago and she still has it.

The only advice I can offer is to do what you feel is right for your son - speak to the professionals and find out all you can about his condition, that way you are informed and this understanding will be a comfort to you. With my MIL I stopped giving her updates unless she asked and then just dealt with any questions in a matter-of-fact sort of way, as otherwise she would upset me too much. Do you have friends who also have babies who you could talk to - often other mothers can empathise even if their DC do not have the condition.

Good luck - it is horrible when your baby is unwell.