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struggling with special needs children

Matchy69
Blue Voices Member
Blue Voices Member
Does anyone else have children with special needs.I am struggling with mine.My youngest cant use a toilet when their at the age they should be.I am getting tired of changing them,does that make me a bad parent?The constant hyperepisodes are taking their strain especially that i am going through other personal stuff in my life
1,006 Replies 1,006

Matchy69
Blue Voices Member
Blue Voices Member
Hi Boudicca and welcome to my thread.I am hoping she takes them today to get tested.She took them last year a couple of times to be tested.I understand why she doesn't want to as its a 1 hour drive and a 2 to 3 hour wait.Its a whole day thing.We do take it turns with appointments usually with the kids as they have a lot.I don't have a car at the moment as I lent it to my ex.My ex just has away of blaming me for everything and making me feel like crap.My daughter finishes school this year and I am really stressing about that.What will she be doing next year.Shes struggling so much with anxiety and everything else she has.
Take care,
Mark.

Matchy69
Blue Voices Member
Blue Voices Member
Hi Jstar yes they are self isolating as far as I know.I have been self isolating since Monday.I been self isolating most of my life before it became a trendy term.
I am just in a real depressed state at the moment the latest covid cases here have put me back again.Theirs one case in the hospital I went to last Friday.This is just effecting people's mental health so much.
Take care,
Mark.

Matchy69
Blue Voices Member
Blue Voices Member
Hi all just to let you know my ex took the kids to be tested today so hopefully get a negative result tomorrow and we can go back to living our lives.I think the kids are use to being tested now.

Boudica
Community Member
Hi Mark, I like your comment "I been self isolating most of my life before it became a trendy term" Ha Ha, this is me too! I admit sometimes I was secretly glad of covid as I was able to avoid any social interactions I did not want. I also recognize that although I have this tendency, it is not always the best for me, and I force myself to stay at least loosely connected to the world outside. You mention your daughter will soon be finished school, I think any impending change is terrifying when you have a special needs child. My son will start high school next year and I am terrified. Primary school has at times been really awful for him, and he has never been able to make any friends. It is a tough world out there for those who do not fit the mould. I hope your daughter finds a direction that brings her happiness and confidence. Take care

Jstar49
Community Member

Hi Mark,

Hey man, stay strong. It's got to be hard on you atm esp, after your op and everything. Gotta keep things in perspective, as usual, and just take things one day at a time. We can plan for a future but there is so many variables that it's not guarenteed anyway, so any sense of permanency is an illusion. (Thats one take on it anyway) That being said, if you're a sensitive person it's hard not to be affected by the general fear around this disease. It sure is changing the world we live in! I still celebrate the small wins for nature tho, esp less planes in the air. Maybe we can never go back to the way things were.....

Boudica said "I hope your daughter finds a direction that brings her happiness and confidence." I liked this comment. Its so true. And it's a great time to be unique and different. It's more celebrated than at any other time I can think of. Finding other ppl to be unique and different with is always fun too lol.

Love your uniqueness Mark. Dont let the buzzards get you down!

Cheers

J*

Matchy69
Blue Voices Member
Blue Voices Member
Hi Jstar just been a quiet Easter for me haven't seen the kids yet.They are suppose to see their grandparents today.
Not long for my daughter to go at school only two terms to go.Hopefully no more disruptions .We all have are uniqueness about us just that some are harder to fit into society.Trying to fit in and belong is the hard part.
Take care,
Mark.

Jstar49
Community Member

Hi Mark,

Thats it exactly isn't it.

I know we are meant to be able to walk our own walk, and be ok with liking ourselves forst and foremost, but we all have an innate need to belong.

Sometimes we find it in unusual places tho, which seems to work for me. Like the BB forums. Or the other gardening 'groups' I belong to. One of the benefits of our global community!

Your daughter will find her place.

Cheers,

J*

Matchy69
Blue Voices Member
Blue Voices Member
Hi Jstar I am just getting a bit worried about my finishing school this year and all her safety nets taken away and she will be 18 early next year.I just want her to have some sort of life.Its going to be hard for her to find her way in this world.I will have a talk with her when I get her tomorrow for the week.Just because she turns 18 doesn't mean I end my responsibility for her even though the government may think I do.
Take care,
Mark.

Boudica
Community Member

Hi Mark, hope you are having a nice day.

Sorry if you find this weird and creepy, but I have read through this thread, and I have been thinking about your daughter. I have a son with autism (not to mention traces of it all through my family!) so I understand being a parent of a child who sees the world differently. You mention your daughter has selective mutism, does she speak only within the family or is there anyone else she speaks to? Has she been able to make friends?

Growing up I was a really, really quiet child, and hardly spoke at all at school, except to one close school friend . But then after some major change in my life and moving schools when I was fifteen, I found I was not really able to talk at all to those outside my family. I remember it as a strange kind of paralysis. It is really uncomfortable when people approach you, or ask you questions and you can't respond. It was like a tight feeling inside and then was just no words. I couldn't really turn thoughts into verbal words. Yet I could write everything down and my thoughts would flow. I guess it was a kind of anxiety response to my situation at the time.

I am not like that now, but it did not go away over night. I had to gradually push to defeat it on step at a time. I started with things like ordering a pasty from the bakery. I would rehearse over and over the words that I would say, then walk up with them on constant repeat in my brain and say it before the words fell out of my head. It threw me if anyone tried to go off script though!!! These days I can talk to anyone without rehearsal. Your daughter may be up for tackling small challenges that take her out of her comfort zone, as that is how you grow. She's got a great dad to support her too 😉

Jstar49
Community Member

Hi,

Boudica that was really helpful to read, as I have no experience with selective mutism. It really helped me to understand a little bit what it must be like for Marks d, and also....How encouraging that you were able to overcome it!

I used that technique to get my youngest to talk more in situations when she usually wouldn't. Basically starting small, practicing with her, rehearsing with barbie dolls, walking thru different situations. She was shy and getting excluded at school from kindy on. She's so strong now, a few years later. She has a good group of friends which helps.

The corner shop was a wonderful place to practice things like asking for something, and counting out change. We have to be a bit more creative these days, esp with covid.

Mark my fried was going thru similar feelings last year. Her d has downs sysndrome, and she was very anxious about her supports disappearing, esp as she has to work and couldn't be there to drive her around. They're both going good now. G has a lot of support in place, learning life skills, and some work experience in place. My friend has gotten used to leaving her at home. She's learning stuff. One day she'll be catching buses on her own, and maybe even having a boyfriend. Just like anyone else. Only different.

I look back now about how I felt when my eldest was approaching school leaving age. I honestly didn't know how she would go. (As it turned out it was taken out of my hands, which was incredibly painful to not be involved in her life at that stage)

We all worry about this stage I think. It's the nature of it. Your d's special considerations might give you more concern, but the rules are the same. The baby chicks have to take their first flight, leave the nest. We can help them, if they let us, but we can't do it for them.

The worst thing is to worry. If you can turn your worries into productive action, like picking up the phone and finding out options for school leavers, or researching things she might be interested with. Maybe talking to the school counsellor or someone that has made a connection with your d? You won't get all the answers, but it may help to alleviate some of your concerns.

Cheers,

J*