We need some help please !

[Stuartjb1]

Good evening.

3 years ago my son was hit by a car and suffered a TBI he was 11 and a talented Triathlete.

Amongst his injuries he had a severe bleed to the brain and brain stem.

3 years later he is unable to speak, has delayed processing speed and high tone all down his right side leading to severe gait.

Emotionally he struggles as his once close friends have deserted him. My wife and I find his low mood the hardest thing to bear he seems to have lost all interest in life.

He has had counselling but I feel a support group would help him make friends. We have tried to go along to other disability groups but find that his brain injury doesn’t really fit in with either physical disabilities or intellectual disabilities and do don’t find these helpful.

Can anyone suggest any groups (preferably down south in Hampshire) for him to mix with children with similar injuries / disabilities?

Also a support group for parents and siblings would help the rest of the family.

Many thanks.

[Hidden]

How about riding for the disabled? There will almost certainly be a group somewhere near you. He will meet others there. Also check out your local leisure center, many of them have special evenings for the disabled where the exercise might do him good too. Would he be able to join the local scout group, many of the activities there could probably be enjoyed by him.

[Stuartjb1 in reply to Hidden]

Hi

Many thanks for the advice. You are right there is a Riding for the Disabled group nearby and we attended for 6 months but he soon lost interest.

The Saints Foundation were really helpful but they have recently stopped their boxing for fitness session. He swims twice weekly do that helps and I have just employed a personal trainer to help him. Fingers crossed

[StrawberryCream]

Are you aware of the Child Brain Injury Trust? If not take a look at their website and they would be a good organisation to contact.

[Stuartjb1 in reply to StrawberryCream]

Yes I am aware, I have just made contact many thanks

[StrawberryCream in reply to Stuartjb1]

Headway only do groups for adults and that's why I suggested the Child Brain Injury Trust. They will be able to help you with helpline, info, services etc. Am so sorry to hear what has happened to your son when he was 11 yrs old.

[Wazza84]

Hiya Stuartjb1

Have you been in touch with Headway? They do a lot for brain injury survivors..

headway.org.uk

[Stuartjb1 in reply to Wazza84]

Not yet but am going to now after reading some posts. We hadn’t because I thought they only dealt with adults. Thanks

[Wazza84 in reply to Stuartjb1]

I’m not sure if it is just adults they deal with but they will help either way.

[Alice5]

Hi

That must be so hard for you, all parents want is for their child/ren to be happy and enjoy life.

Does your son have physio or see other external agencies who may know of an appropriate group.

What school does he go to? Do they have any suggestions? Also, as someone else mentioned, Headway, if they don't know, they may be able to find out for you.

Good luck, please let us know if you're successful, it may help someone else

Alice xx

[Stuartjb1 in reply to Alice5]

Will do many thanks

[Alice5]

Hi

Me again! I've just googled Hampshire Disabled Children groups and it's brought up quite a few websites.

Take a look and see if there's anything that's suitable for your son. I hope so, let me know.

Alice xx

[DTBI]

I also recommend Headway, they apparently have branches in Portsmouth, Southampton & Basingstoke. Hope one of them is useful for you👍🏻

[Stuartjb1 in reply to DTBI]

I am going to try all 3 ! Many thanks

[steve55 in reply to Stuartjb1]

many of the things you are going through with your son, you would be going through if he were an adult, losing his friends, mood swings, no doubt hes noise intollerant, comes across as rude etc, but he doesnt know, i dont know until my wife picks me up.

i have a speech impediment, i swear continually, i dont realise.

you know personally id take him along to your local monthly headway group and keep quiet about his age. hell meet people who can help him and youll meet the little darlings who put up with us.

does he attend a normal school?

[SillyPhil]

I'm afraid that your son losing interest is probably a symptom of his injury also. Try to push him to go and he may find that once he's there he enjoys it? I had my accident 20 years ago and I struggle to initiate action, motivate, and to maintain friendships or go to Groups. It's tough. But that's brain damage. BUT your son's brain could still be trying to heal itself as his injury was only 3 years ago, he's young AND he has you to help, stimulate and motivate him. I STILL find that I cannot do tasks unless I'm helped by someone. And I'm 55. Sometimes the help I need is someone just stood beside me and paying attention to what I'm doing. That's all. And it works. I call it 'enabling'. And if the person enabling me stops paying attention and starts checking their phone, they cease to enable me and actively distract me. Work that out! Low mood seems to be a symptom with me too. In my case I was in my 30's when I banged my head so I was a fully formed adult. I can see what changed for me after the accident, lots of problems with sorting, prioritising, organising, motivating, planning, sequencing, concentrating... and lots of subtle magnifications of certain traits. Pre-existing traits like anxiety can be exacerbated. But your son won't have fully developed as a person so it's difficult to spot those subtle changes. The best place is Headway as the people who go there understand. I mean REALLY understand. I go twice a month. Ask around and see if anybody at Headway knows of other activities. I've read the other relies to your Post and there are some great suggestions. I'd also recommend reading as many Headway booklets as possible. Maybe you have? If so read them again now and then. I do. I wish you well. Phil

[Stuartjb1]

Sorry to hear about your situation. Really helpful post (made my wife cry) will follow up your suggestions

[bexx87]

Hi, I had my TBI when I was 13 and I was bullied at home by my mum and at school, I suffered from depression, insomina and anxiety as well as raging puberty hormones, I wish my mum thought about getting me involved in other disabled groups as I didnt have friends due to low confidence and self esteem because of this for years and years I felt alone in my day to day struggles growing up and living a normal live (going to college mainly) it was only by accident that I found out about Headway 5 years ago and I got invited to attend a new social group they were starting (but because of my job and how well i have everything held together because I didnt have a choice I get no help) and even now it feels very weird as I cant related to anyone in the group because Ive been raised to not register my injury so the group sometimes annoy me when I go and hear them complaining about how getting help is a struggle and oh pity me im getting benefits or they are getting cut (no offence to any one), its hard work maintaining a full time job, gaining all my qualifications and a independence life with no one asking are you okay, do you have any food in your flat, ect and I still dont get why anyone I tell "I work as a civil servant full time and i have a TBI" gets so excited or why my headway article was so popular because Im just living a normal life trying to get by so maybe if I had a better understanding of why I got taken to hospital appointments and told it was okay not to succeed I could maybe relate to a majority of the posts on here.

I think its because I was told to ignore my injury and act like it doesnt effect me that I have alot of unresolved anger issues towards my mum

[jayne_h]

Just in case diet might help, try using Tina M Sullivan's cookbook, Nourish your Noggin. There are lots of child friendly recipes in that like lovely smoothies. You never know !

[Kavib]

Hi Stuart, please call this number or go on the link below. They will give you a group suitable for your son and once he has the right support you will see the positive change ! Helpline

0808 808 1000

brainandspine.org.uk/