struggling with special needs children

[Matchy69]

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

[Boudica]

Hi Mark,

It is unlike you to be away from here for so long, I really hope you are okay.

Thinking of you.

[Matchy69]

Hi Boudica I am sorry I haven't been on for awhile.I have been sick with Pneumonia and in hospital for it.Slowly getting better.I hope you are coping ok.

Take care,

Mark.

[Paw Prints]

Hello Mark

Good to hear you're on the mend... take things slowly

Paws

[Boudica]

Hello Mark,

How awful for you, I'm sorry you have been so ill. I hope you feel better soon.

Don't feel pressured to write, I was just worried.

[Matchy69]

Hi Boudica I am feeling better but still have it lingering on a bit so I am still not completely healed.My son didn't go to sleep to 4am this morning so I am feeling really tired and run down today.I hope your weekend is ok.

Take care,

Mark.

[Boudica]

Hi Mark,

I am so glad you are winning the battle against your illness. I think sometimes you don't really comprehend how sick you really were until you start to feel a little bit normal again. Sleepless kids are just agony. My son sleeps amazingly well at the moment (hurray), but was on meds that made him active at night for a while (imagine child getting up at 2am, running around and hammering on the side of the garage like a drum, and throwing random objects in to the air to watch them smash on the ground!!!). I hope you have a better night tonight, I know how tough it can be.

I am kind of glum at the moment. The future just looks hard at the moment. My son was sent home at 10:30am for tearing up his maths book. My mother got a call from her neurologist with some bad news and my ex is due to have major surgery in a few days (most organs to be removed from pelvis due to location of cancer), he will have to learn to walk again due to the extent of the surgery. I have been really worrying about the surgery, as it is pretty brutal.

I know it seems selfish of me, but at the moment I am also frustrated that I can't do or have anything, as it seems my life will be completely swallowed up by looking after other people. I have had to put any plans for myself on hold (including study), until some of the health issues improve, as I am always on call for others. I will now have 100% care of my son and my mother will need a lot more help going forward.

Part of what troubles me is not earning money for the future, as I worry about providing for my son financially when I am gone, as I do not really imagine him working. I have savings but not enough, they could be gone in a blink. My ex is terrible with money, when he inherited money he spent it on designer clothes and watches. He is now living with his Mum, who is paying for everything for him. He did not contribute anything towards the house that I have, and has never contributed financially to Blake's expenses, it has always been my work that paid for everything. Now I am not working how do I build any wealth for the children?

Sorry about the rant, it has just been one of those days, gloomy weather too.

[Matchy69]

Hi Boudica I am sorry youare struggling at the moment to and understand how you are feeling about your future.I just see no change in anything for me.I just see the same thing for my future.

I managed to go to my son's sports day yesterday.I had a good chat with the principle about my son.They were going today to look at other options for my son for his communication.His writing is really bad and ilegdible and stuttering has got worst.Trying find something they can use that he can continue using during high school and they been in contact with the high school about it.

These sleepless nights he has didn't happen that much these days.One period one of the medications he was on was keeping him awake all night.

I have booked my daughter in for a driving lesson Monday with a teacher who specialises in students with special needs and disabilities.Hopefully that goes well.Next year is stressing me out what my daughter will be doing.I think it's to hard for her to get a DSP these days.

Your always welcome to vent on here Boudica.I know how hard things can get.

Take care,

Mark.

[Boudica]

Hey Good Morning,

I am feeling better today. Although nothing has changed, I think it just takes me a bit of time to process each time there is a new setback. It just seems neverending as I have had close family members with serious illness constantly for 10 years, and it grinds you down.

Some new succulents I ordered in the mail arrived, so that brightened my morning (I am going to plant them in a hot dry spot near the letterbox, not sure if the postie will like them when they get bigger as they are spiky).

Your son's school principal sounds really proactive, that is a great thing. My son uses a laptop at school and types everything up instead. He hates writing.

I remember learning to drive. At first my Dad took me for a couple of lessons, and it was awful! His philosophy was just leave you to it and you'll work it out - he didn't even explain the clutch at first. After that I got an instructor who was fantastic, it really makes all the difference. If they specialise in students with special needs, I think it should go well, as long as her expectations are managed ie. it takes a lot of practice to learn to drive, so it is only natural to be anxious and unskilled at first. I used to eat a really sugary bar before each lesson, as I found the anxiety of driving would cause my energy to really crash otherwise.

For your daughter, it will be really important to maintain some kind of social link outside family, such as volunteering once a week with animals, as young people can quickly feel isolated once school vanishes (even if they never liked it). Is she still going to do the animal course? Some people still seem to get DSP without a severe physical disability. My ex has a younger sister who has struggled with Agoraphobia for years, and she was able to get DSP (maybe 8 years ago now though). Otherwise, if your daughter is put on jobseeker, she may be able to get an exemption to some of the jobsearch activities.

Have a nice day 🙂

[Matchy69]

Hi Boudica i am glad you are having a better day.For over 3 years I was full time carer for my terminally ill mother and that took a lot out of mentally and now trying to look after my 2 kids best I can.

This principle is the best I have come across over the years and I have seen a few.She takes no nonsense and won't send students home when they are playing up.She seems to have so much respect from all the students and staff as well as the parents.Their is more to being a principle then just having the education for it.Ehen looking for a school for your son see the principle and ask them what their policies are with special needs kids and that.

When I was 17 I didn't go for my car licence straight away and went and got my motorbike one first and then a couple of years later bought a car and my dad taught me drive.

I never did end up signing my daughter up for the animal course and wish I had now.She still wants to work with animals but seems to be always sick and has missed so many days from school from it.

I think my son will have to use a laptop full time as he just can not write.I do not know how the meeting went today when they were looking at options for him.

Buying new plants cheers me up to then I have to workout where to put them.

Take care,

Mark.

[Boudica]

Hello Mark,

Sorry so slow to reply, I have been a bit stressed, sometimes life is just hard. My ex has had surgery and has been in intensive care this last week. I think he is getting a bit better though, hoping he might be stable enough for a regular ward next week. My son does not talk about what is going on with his Dad much, but sometimes says really grim things, and has been really clingy, hopping into my bed in the middle of the night (which he never usually does). I really believe that his Dad will be ok this time, but lets hope the cancer does not come back a third time. My son is only 12 and he needs his Dad. I met his Dad when I was in my early 20s, so we have a lot of history, and although we couldn't make things work, I care for him still. Neither of us have had any other relationship, I know that is really weird these days.

Mum has now been diagnosed with Non-Hodgkinson Lymphoma (a type of blood cancer) in addition to her existing degenerative disease (cerebral and cerebellar syndrome, peripheral neuropathy etc), but it is moving slow, so she does not want to bother with chemotherapy at the moment, as it will impact the quality of her life too much.

Your daughter can still do the animal course when it is the right time, if she wants to. There is no rush, maybe she is not ready yet. Has she started the driving lessons yet, or taken her learner permit test? The learner test can be a barrier to some (I knew a girl with dyslexia who took it 3 times). It will give her confidence to make progress with this, as it is a big step toward independence.

How are you going getting over your illness? Are you still coughing a lot? With covid around, people give you the evil eye if you cough, but then if you try to hold it in, it gets worse (I get asthma).

My son has a school camp coming up. He would not cope with it all, but usually what I do is get accommodation nearby for us, so he can participate in some of the activities without being there all the time. Hoping he can do the horse-riding and archery. Do your kids participate in school camps? I used to absolutely love them as a kid. I used to camp out in the back paddock with my best friend sometimes too, happy days.

Thanks always for reading

All the best