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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
641 Replies 641

Matchy69
Blue Voices Member
Blue Voices Member

Hi sleepy my son slept through to just after 6am and I made him pancakes for breakfast and saved some for him tomorrow at least I get a couple of days of toast duty.I have been awake since about 3:30am.I hope you can have a nap today.

Tale care,

Mark.

Guest_1643
Blue Voices Member
Blue Voices Member

thanks mark, same for u!

pancakes sounds like a good break from toast-duty

it's nice that you cut up watermelon for him and make him food he likes

i'm quite sleepy today myself.... ;my friend and i went today to pick up a set of drawers from gumtree. They are so heavy and we couldn't carry them, i'm going to have to as a neighbour to help me bring them into my room

Bit tiring but they look nice

Jstar49
Community Member

Hey Mark,

It looks like the others have had some good suggestions. The star chart is an excellent one. I can remember my sister (when she was still talking to me lol) telling me about it for my eldest. I found it hard to be consistent with it, but kids do love them hey. We used the reward of buying a toy I think, when it got to a certain number of stars.

It sounds like you're really worn out by all the caring work you're doing.

You absolutely have to look after yourself, and do whatever you can to make life as easy as possible. The fruit thats easy to get is great, and you've thought of so many ways to work around the difficulties for your son. I'm guessing all the professionals you deal with have good ideas too.

So what do you do for you? And do you show your kids that you are a human being with needs too?

Maybe, I dunno, maybe you can think about changing it up a bit, every now and then. Like a picnic for dinner, outside on the grass.

And maybe you can encourage your son to do some things for you sometimes, so it's not all about him. Let him bring you pancakes, or pour your milk on your cereal. Remember to encourage him and take the time to enjoy his achievements, which can be sooo hard when we're tired, but could actually help you to connect and be present. Beware the zombie state!

I had this amazing drink at my friends house recently, it's like a b-vit fizzy tablet with guarana in it? Not sure if it was that, or the zinc tablets, or the vit c, but I felt great! After feeling really tired too. You mite need some B vitamins...

The stuff with your daughter sounds really hard too. My friend has a d with down syndrome. She really struggles at times, and found the yr she turned 18 to be the most challenging so far. There's just so much she wants for her, and the system with all it's assistance is really quite limited. It's such a challenge for her, and for you it sounds like.

It sounds like you are feeling really responsible for how well your daughter does, and what happens after school. With my eldest i remember feeling quite anxious that she wasn't doing well, and then she started to self harm and that really threw me. If I could go back, I guess the first thing I would tell myself is, Don't worry about school! Protect the relationship, make time for her, love her. She was making decisions I didn't even know about.

Your kids are lucky to have you.

Take care, of you,

J*

ecomama
Valued Contributor
Valued Contributor

Hey Mark

I'm glad to hear you're doing the night nappy. I know they leak at times but with an absorbent mattress protector like the ones they use in Nursing Homes ON TOP of the sheet then that could help too.

I found star charts were good but ONLY if there were very regular tangible rewards after 3 stars to begin with and phasing out, if behaviours could be maintained.
eg 3 stars meant a trip to the park for 30 mins.
Or a Freddo or something acceptable to the parent and motivating for the child.
IE something the child wants.

it's VERY exhausting at first keeping it up with stars and rewards etc.

But if the goal is reached then it's less work in the long run.

Love EM

Matchy69
Blue Voices Member
Blue Voices Member

Hi Sleepy,Jstar and Em, Thank you for your caring support.Last night the kids went to bed early and so did I and I woke up about about 3 times to go to the toilet.I have woken up so tired again and might see when my doctor comes back from hoidays.I have seen other doctors there but don't really them and feel comfortable with them but if I have to see one of them I have one in mine.My son has just woken up and he will be a 'l excited about seeing the phsio physio and then lunch at the cafe opposite the park though rain is forecast today but they have been saying it all week and hasn' really rained but because today I am going to the big park it probably will and it rains a bit more on town.

Sleepy that is great you got a set of drawers and they must be soldly made if heavy.I need a new bookshelf and might have a look on gumtree for one.I was going to build one but pricing the wood works out expensive.I kept some of the pancakes for his breakfast this morning.I am surrise he isn' up yet as I can here in chatting away.

Jstar I did buy all these matchbox cars and mini trains and things as rewards and have a draw full of them for his reward so I will try the chart again.His pschiatrist depressed me by saying he might never be able to use the toilet and that thought is stuck in my head.I am worried about my daughter as she turns 17 next month and not sure if she will get the support she needs now she is becoming an adult.I had to renew her carer allowance I get last year when she turned 16 and centreink just cut it off and didn't send a letter or anything to say we had to apply for adults one.

HI Em yes they do leak from time to time and I don' think it's helping with all the water melon he is eating.I do have a plastic sheet underneath his sheet so it' only the top sheet over the top o have to change.I will start the rewards chart again and see if it helps.Struggling with my tiredness I sort of give up with things like that.Hes up so I will leave it there for now.Thankyou all so much.

take care,

Mark.

Jstar49
Community Member

Hi all,

Em I'm glad to hear you say that star charts are very exhausting, and only works if the rewards are very tangible and regular,- 3 stars sounds like a good place to start. I felt like such a slacker for not being able to keep it up,and the way you phase it out must be important.

Everything extra does just take that extra bit of energy, hey Mark.

It sounds like your son is really motivated by the park-noted!

I remember how surprised I was at what my d chose as the reward. Often it was way too big or expensive lol so it was a bit hard to come up with something workable. (and easy and affordable each week!)

So much work in nappies! I can imagine it was disheartening to hear that your son might always need them. Perhaps he could become more self responsible with it, apart from the toilet training. Like help with the other tasks which accompany it all, stripping and making beds, pulling nappies on and off, putting them in the bin.

Sorry, I'm not sure what he's capable of and what he's doing already.

Hang in there. Sleep whenever you can.

Cheers,

J*

Matchy69
Blue Voices Member
Blue Voices Member
Hi all,my son is starting to ask me awkward questions why I don't live with his mother anymore and did I use to live with her.Not sure really what to say.

Paw Prints
Valued Contributor
Valued Contributor

Hi Mark,

I think it would be a good idea to talk to his mother about how to answer this so that you both explain it in the same way... if he is asking you he will probably ask her as well.

Paws

Matchy69
Blue Voices Member
Blue Voices Member
Hi paws thanks for your suggestion it would be easier if my ex and me were on the same page.We try to be with most things.My son tells everybody everything like the teachers at school and the family I really have to be careful how to approach this.
Take care,
Mark.

Guest_1643
Blue Voices Member
Blue Voices Member

HI Mark

how are you doing, have you managed to get some rest?


Sorry I don't know much about parenting but I'm sure you're trying ur best. Hard to answer those tricky questions.