Severe Intellectual Disability

LegacyUser

Hi All

My child who has always been the most beautiful person to me was diagnosed with Severe Intellectual disability. Mentally handicapped in old terms

Thing is I find it hard to cope with it. Granted this might seem like a PI but its not I need your opinion ie those who deal with such an illness/disability

He cannot speak, bar a couple of words, He has developed his own sign language, honestly! but yet only has the mentality of a 10 month old. He is 5 years

Some days he screams, some days he screams for hours!
He will never understand me so every day i start to do the same skills i done the prevcious day

He does not socialise, He has no friends nobody understands him. I love him but i really worry about him

He is a very happy child in general

What am I asking. This condition is like authism has anybody any experience of delaing with this. How do you calm down, not worry, get by.

Dont mention the respite word I will die before I subject him to this. I love him to much to leave him!

LegacyUser

Hi "Dad"
I'm very sorry to hear you're dealing with this.It must be incredibly hard. I don't have a child with Autism but I do have a relation with a very severe and disabling chronic illness that they've suffered with since childhood.Its not the same as what you are dealing with but on some level I can relate.I hope you'll get lots of replies here from people who are dealing with autism. If not maybe try the parenting forrum too.

From reading your post I can tell you that as children with disabilities go that your little boy is off to a good and lucky start having a dad who obviously loves him so much.This is so important.You will be the greatest asset in the world to him.Have you thought about joining a support group?Getting support for what you're going through will be very important for you and also for your little boy.You can learn so much listening to other people who have been in a similar position and from hearing what they've done and what they've found has helped/not helped.It's a good release valve for stress and worry too.Talking to people who understand your worries and share them can really help keep you sane. Internet support groups can be good too.Some focus on research or trying to find cures etc but the ones that just let you rant about how awful things are somedays and give you a supportive response from someone who understands are the best. Books on subjects like autism and mental disability in children can be a great way of learning coping strategies and reminding yourself your not alone in the struggle too.

Also find out what help is out there from social services etc and take any help going.It doesn't have to be respite care.Maybe you could get a carer in the home who might be able to help you with things and take some of the burden?Maybe there's a special school your son could go to?
Do anything to help keep too much stress off yourself too.Maybe if you can afford it
get someone in to do your housework or keep on top of the little things that might give you more time to spend with your son or just time to relax a bit more.You really need to give yourself every break you can or you become overwhelmed.

Its great that you feel that he's developed his own little sign language.Sometimes children need to be reached on their own level.They mightn't perform well on scale of mental abilities but if you can reach him on any meaningful level,just to let him know you're there and love him and see him register that,then that's huge.Keep doing that...keep trying with him no matter what anyone tells you if you feel it helps.

I don't think there's any easy way of staying calm or coping. I'd say if you asked people how they deal with awful situations they'd tell you they hardly know.From my experience of dealing with illness I found that the best way to stay calm through it and cope is to let go the old expectations you had of how life was going to be and how it should be.It's a grieving process and it takes alot of time.Its really tough letting go when you see nothing concrete that you grasp onto and you don't know how you'll cope with the future but when you do it ,you start finding happieness in the small things from your life as it is.Sometimes you just can't cure something and you can't travel years down the line and ensure the future will be bearable.The only thing you can really strive for is to make your child as happy as they can be in the situation now and the knowledge that you're doing a good job. I think it sounds like you are doing a good job.I really hope you'll find some advice that will help.

lily lou

I'm sorry to hear this, it must be very tough on you, but just remember that he is the same beautiful person he was before you got the diagnosis.

The fact that your child is using a few words and some signs is great, he understands and is trying to communicate, use his signs when communicating with him (say the words at the same time) this will make it easier for him to understand you.

Have you got him into a school yet? He will come on really well in school, look into every option available, A.B.A seems like a great system (if it's suitable) but there are loads of schools for children with Severe Intellectual disabilities that will help him reach his full potential.

Oh and he's so lucky to have such a loving supportive Dad, good luck.

LegacyUser

Hi OP Here

Thanks for your comments I do have him in school( Its a special school) and social services are doing all they can. The sad thing is they are very unprepared for my man cause he is in between. Believe it or not you learn that parents are self diagnosing and very good at analysising these conditions.

I could talk for hours about him, lots of good not so much bad just hard to cope with. He is very goodlooking which is a pity. He would have made a goodlooking husband/Dad.

All the advice received has been appricated. Thank you

LegacyUser

Dad wrote: »

Hi OP Here

Thanks for your comments I do have him in school( Its a special school) and social services are doing all they can. The sad thing is they are very unprepared for my man cause he is in between. Believe it or not you learn that parents are self diagnosing and very good at analysising these conditions.

I could talk for hours about him, lots of good not so much bad just hard to cope with. He is very goodlooking which is a pity. He would have made a goodlooking husband/Dad.

I fully believe that parents know best when it comes to their children. Social carers and doctors etc might feel they are the authority on the condition in question but you are the expert on your child.Always remember that and stand up and make sure you're heard if you don't feel they're right about something.That's important for every parent but particularly for one who has a child with special needs.Sometimes social workers and teachers etc ,with the best will in the world, are rubbish at helping out in the way that best suits your child and their needs. Alot of people think they charge in on white horses with great answers for all your troubles but its rarely the case. I really hope that you'll have a good experience and find someone helpful in the system who will be prepared and able to help your son though. You really have to keep looking and asking for more if you're not getting what you need.You sound like a brilliant dad to me btw and he sounds like a great little boy.


Of course it's a pity your little boy won't get the chance to be a husband or a dad. Being good looking will stand to him all the same though. Often people can respond a bit better to a child who is good looking (that's not fair of course but its often the case).
Seeing all the things that might've been and feeling sad for the fact they won't be, is normal. It's part of the grieving process. Talk about how you're sad and frustrated and angry that life would take all those opportunities away from you little boy. Talking about it can really help.

Good luck with it all. I really hope the best for you both.

Rev Hellfire

While I know you said don't mention respite, I think its a very important service to have when dealing with profoundly disabled children.

Even getting a weekend to a week every few month would allow you to significantly recuperate, as dealing with these issues full time is both mentally and physically exhausting.

It good for both the child and the parents in the long term, its most certainly not a betrayal of any sort.