New to being a carer

[Zoe H]

Hi Zebada,
I went through a similar bad patch when my son was little. He was brain damaged at birth, with a brother 2 years older, and we were trying to restore a cottage from a dump to a palace. I was in jeans and sweatshirt constantly, such a shalooking back. You should have been put in touch with some specialists to help with your son - find out if there is a local playgroup where you can leave him - we had an Opportunity Group - then promise yourself that the time on your own will be devoted to you. If you can find a local mums group that would be immensely useful too. Good luck.

Hi bowlingbun, thanks for your reply. I do take my son to a Down Syndrome Group which is once a month where they have play therapy and physiotherapy but other than that there's none other (of course nursery is there but cant afford it . I know my mother in law would'nt mind looking after him for a few hours if i need but I'm wary as she's a frail old lady and I'm not sure she would be able to manage when he start having his usual bouts of frustration, crying and being sick and distressed as he has Gastroesophageal reflux. Im yet to find out more details about surestart but someone told me that they provide free 10 hours per week nursery time when he turns 2 years. So I'll check out how this goes

[bowlingbun]

If you are going to a DS playgroup, that's brilliant. Have a chat about benefits, facilities, Family Fund, Carers Allowance etc. with the other mums. You will learn so much from each other, and I hope will become good friends with each other in the years to come. I made friends with a mum whose child was about 3 years older than mine, 30 years later we are still in touch. She taught me so much, because she was just that bit ahead of me. More playgroup time would be good for both of you. In an ideal world Social Services would offer you things, but when money is tight you need to push harder to get what you and your family need. For example, if you are on a low income the Family Fund might buy you a tumble dryer to make washing easier, or give you a well earned break. Don't be afraid to ask on this site if you would like to know whether something is or isn't available, someone will probably have the answer. Take care.

[Melly1]

Hi Zebada, sounds like you have your hands full! Not surprised you don't have time to spend on your appearance and rarely look in the mirror. I confess to being scruffy, though I always ensure S my lad is always tidy in his appearance.

Do you have any visiting services for your little boy - Portage is great, they visit you at home, and set a play activity for homework which will be designed to help you little one move forward in his development. They will also teach you a few Makaton signs (or put you in touch with someone who can) to help you develop his communication skills, which should help reduce his frustration and tantrums. If his acid reflux is not properly controlled then seek further advice - it is truly painful and the right balance of meds can really help.

Keep posting.

Melly1

[bowlingbun]

My son found Makaton really helpful too. I was really worried that if my non speaking son learned sign language he'll be less likely to speak. Somehow it actually works the other way round. Although his speech isn't perfect, at least he can speak and make himself understood. I can understand more than anyone else, and now it's got to the stage when he almost can't stop talking at times. Hope this reassures you. As a family we still use Makaton at times. We give demonstrations at large country shows with our steam engine, it's often easier to sign when tea is ready, or there's some cake or biscuits, rather than interrupt a demonstration or conversation!

[Zoe H]

Thanks for the information. Ive never hear of Makaton, silly me I will find out from the local council about it.

[bowlingbun]

Dear Zebada,
It's not silly you at all. You need to start taking a different attitude (one which took me years by the way, so learn from my mistakes!) It's actually silly Social Services. The more you are empowered to care for you son, the more he will maximise his full potential, and the less, in the long run, Social Services will have to pay for his care. If no one in your DS group has heard about Makaton, then why not ask an expert to give you all a talk and some guidance together. Years ago, I started a local charity for all mums of children with special needs, self referred. We found that there were many children who didn't have a "formal diagnosis" and as a result were not getting the care they needed. The more mums get together, the better it is for all of you.

[poppett]

Welcome to the forum from me too.

Hope you make lots of new friends and find loads of useful information.

Take care
Meg

[Zoe H]

We attended the group but didn't have a chance to ask anything as everyone were busy with physio. But there will be an early years development team that we'll be meeting next week and they will have answers I think.
There something that's really saddens me since yesterday, and I have no one to talk to so right now it's already one in the morning and I still couldn't sleep. What happened was my mother in law is very attached to my husband brother's 3 year old daughter, whenever she visits my son, that would be like once a week she would bring the child with her. My son likes his cousin and he would reach out his hand to touch her, she started crying and then said that my 1 year old son smack her, we were all there and saw what happen but my mil turned to my son and said don't do that. After sometime my son started playing with his favourite rattle and his cousin just went and snatched it from him, he started crying, then my mil turned to him and said come on don't cry let your cousin play with the rattle. Does that mean that my one year old son has to compromise and humour his 3 year old cousin? I was making a silent prayer to God to give me strength to not say anything but it's making me worry so much, am I being paranoid?

[bowlingbun]

I found that one of the hardest things about being a mum of a special needs child is learning to be more assertive and a bit toughter. It's really important to nip the behaviour of both MIL and spoilt little cousin in the bud as soon as possible. Your son needs these people on his side, but they clearly need educating, which is where the assertiveness comes in. Next time cousin takes something you son is playing with, explain to the cousin that it was Freddy's and she must not take things which are his without asking first. Then take the toy off the cousin, and give it back to your son. If he wants to touch his cousin, just explain to her that he wants a hug. (My son has LD, not Downs and always had to touch girls long blonde hair, it fascinated him) Mother in law sounds like she is a problem - which ideally your husband needs to tackle. Your son has just as much love as the cousin, and again, you need MIL on your side, certainly you don't want the other cousin to be the obvious favourite for the rest of your lives. MIL should be supporting you and your son, but I wonder if she is not sure how to help or what to do? Could you pass on to MIL any leaflets or books which you have found useful? When you have the early development team come next week, ask them for advice too. Ask the people who run the playgroup if they could make time for a mum's session every so often to discuss things like this over a coffee. I assure you, it will be something which concerns others, but they may not feel confident enough yet to raise the issue. At our special needs playgroup, the children went into the playroom, and the mums into a separate room for a chat and coffee. This was where my own help and support really started. 33 years later, some of us are still in touch. Hope that gives you some ideas. Take care.

[Zoe H]

Thanks so much I have discussed with my husband and even he felt the same so we are working around times when we take S to his grans and spend some time there. And I have given her some leaflets that i got from down syndrome association I have hope that things will get better.

I do need another advice, I desperately needed to learn to drive, as I feel it is not wise to depend on other people to drop and pick up, especially at night when we have to sometime attend emergency doctor for S, and further, I could not take him to any activity group if its far, its so frustrating. Are carers eligible for community care grant? very confused as cant afford to pay for driving lessons