Any advice

[Tunstall15]

Hi I’m struggling with my little ones results I’m so worried and scared 😢 I don’t want anything bad to happen to him 😢 he’s got to be seen by other specialist at north manchester but till then I’m going out my mind with worry xx

[Galwaybay2]

My heart goes out to you, I remember those early days realising that my son's path was different to the one I'd imagined and I was full of fear. I also felt alone, even angry, that no-one seemingly wanted to give me information about his future to allay my worry and grief. The fact is, no-one knows. Your son may have a different path to others, but I can now tell you that it does not mean his life will be less. You will adapt and grow alongside him as he reveals the person he is and as you seek out the help you need and he will give you and and family gifts you cannot know yet. We have found that this is a good country for your child to thrive, there are social services and age appropriate groups for you to access for him and people are generally kind. You may have to fight sometimes and there will be moments when that grief returns, but the love of your son will give you the strength for that and he will teach you so much. I know this all sounds a bit evangelical, perhaps because I am able to see myself and all my distress nearly 30 years ago in your message. When my son only repeated one word and I desperately wanted normality I could not have known the life he now has. He has what we all strive for, a life of his own and a sense of himself as valuable and he has taken into himself all the love and dedication of so many over the years. Life is never perfect and he will always need support, but who is to say your child won't also have a happy life if he is loved and he, like everyone, can reach his potential in a community of people he can call his own. The difficulty, for now, is that you can't know what that potential will be, which is scary, but you will get there as your son shows you. I wish I had known how fulfilling our lives could be, even if not always easy. I wish you well and you are not alone.

[Tunstall15 in reply to Galwaybay2]

Thank you so much. This message has made me feel a bit better 😊. x

[Sarah_Mencap]

Hello Tunstall15

I really hope the posts on here help a little.

You sound as if you are talking to all the right professionals about getting a diagnosis. Mencap's website also has some information that you may find helpful here - mencap.org.uk/advice-and-su...

Medication notes, and the terms they use, can be a bit scary. If there is anything you don't understand, or worries you, please ask a healthcare professional.

It might help to be in touch with other families that are in a similar situation. There are families on here, but it would be worth seeing what support is available where you live. I know these are strange times, and they won't be meeting up face to face at the moment, but they may still be catching up on the phone or on Zoom.

There are few ways to find this local support:

>> ask your GP for a bit of help with this.

>> see if there is a family information service nearby. They are likely to have a list of support online. My local authority website links to it.

>> see if there is parent carer group or carer groups nearby. I had a quick look and I found this (apologies if it is miles away) - manchesterparentcarerforum....

>> this may feel very premature, but see if there is a Mencap group near you. You can search on here - mencap.org.uk/local-group-s... Again you will be able to talk to people who understand.

Finally, Mencap's helpline may be able to help if you would like to talk to someone about this. They are very busy at the moment but please do give them a try on 0808 808 1111

You are doing an amazing job getting all this sorted for him. This will means you are making that, if he needs it, he will get support. Waiting to see people is so nerve wracking but try to focus on what you can do.

All the best.

Sarah

[Tunstall15 in reply to Sarah_Mencap]

Thank you x

[Charlie2750 Community friend]

Hello Tunstall15

My son is 33 years old and had a difficult time at birth.He was later diagnosed as Global Developmental Delay and was later doing exactly the same as your son.He was late talking but now I cant shut him up (joking of course because I wouldn't want to) late walking and has severe learning disabilities .He copes with everything but he has poor coordination in his hands so using simple tools like a knife and fork is difficult.He dresses himself and I pull him together a bitHe cant fasten shoelaces but velcro is brilliant.Zips he cant manage but we dont give him zipped clothes.He walks but has no (only a little bit) road sense but we bought him a scooter for his last birthady which I have difficulty keeping up with him.

I wont bog you down but you have a path in front of you which will go well.There are lots of financial benefits to help but some you cant claim until you reach a certain age.First one is PIP probably when he is about 5.

You can get help with physio and occupational therapy and health checks every year.

I hope I have not written anything to worry you but if you need more information then please ask.

I can if it helps post a small video on how my son is getting on.

He keeps me young and I wouldnt ever be without him

[Tunstall15 in reply to Charlie2750]

Thank you for your message. I applied for dla for him he’s getting the care bit at the moment I’m to fill in another form for when he turns 3. Awww a video would be nice and lovely to see. And aww I’m glad he keeps you Young children are just the best 😊 xx

[Rosea123 in reply to Charlie2750]

Hi I am new to this my son is 11 years old and only been diognoused with this after years of trips to consultants wanted to know is your son like this kniw or was at younger age

[Tunstall15 in reply to Rosea123]

My son is only 2 and half years old x

[Charlie2750 Community friend]

I hope this works so that you may see how well my son is doing now.He was born by Caesarian section but with the hole in the heart still open for a while which caused all sorts of problems.We thought he was not going to make it and prayed and he is now 33 year old and doing as well as we can expect.I am aware that this is maybe not what help you need but this for us is a success story and I hope you may see that things may look dark now.If I can help from a distance I will try to answer some questions.I forgot but good for getting DLA but later when he should be walking you may want to apply for mobility.We didnt apply until Thomas was about 9 or 10.Not everyone shows you the right path at the right time.

Take care and I am sure you are doing the best you can.

facebook.com/1193000936/vid...

[Tunstall15 in reply to Charlie2750]

it doesn’t seem to be working I don’t know if you want to try and find me on Facebook and send it in a message and thank you for the messages they are helping 😊 yes I’m applying for his mobility they sent me another form to do that for when he’s 3 x

[Charlie2750 Community friend]

It is possible we may be in the wrong but I have done that x

[Tunstall15 in reply to Charlie2750]

Something came up but it’s disappeared x

[Charlie2750 Community friend in reply to Tunstall15]

Hi Sammie

I don't think we are supposed to give personal info around but it is difficult.It stops other less likable people from using our information and also stops stalking etc.I will try and think around it but it could be that I can invite you as a friend on FB but the moderators on the forum may have something to say .I will think over how best and write again tomorrow. Take care keep strong. x

[Charlie2750 Community friend]

Hi I hope I have managed to upload a video on utube and you can see it there.I did find your FB page but if you wanted to send me a friend request thats ok how ever you may not want to do that and I understand.

Good luck (Charlie farrand)

[Charlie2750 Community friend]

I am sorry I know little of utube but I changed the video to public and now I hope it works but it is only a small clip of 30 secs

charlie