So Tired

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I am tired.

Yes I do need a full night of uninterrupted sleep, which probably isn’t helping, but I am more mentally frazzled at the moment.

When I get like this, I really worry the darkness will take over, and I have to try really hard not to let it.

I think it is a mixture of things that have led me to this present low feeling, but being able to know when I am heading that way makes it more positive than previous times!

Trying to juggle the needs of so many means that at times, well, in fact most of the time, I forget to think that I need to be in the equation somewhere.       I am sure many, if not all, people who care for family, often feel lost in the bigger picture.    We have to make sure the needs of those we care for are met so they are happy and comfortable.    When you have more than one person needing you in this way, spreading yourself far enough to meet all of their needs can mean that there is not much left for yourself.

Now I am not complaining for sympathy, but instead, I am just saying how things are.

My Mum has at last had a visit from social work.      It is something we have waited for for a long time, but better late than never as they say.       The lady who came out was lovely.   She listened to what we had to say and agreed to arrange respite care for Old Person for next summer.    It is a huge relief to think we wont have to cancel another holiday because we had nobody to Granny sit for us – we cancelled 2 get aways this year and ended up taking her with us for another break, which meant it was not very restful for me.      The boys are over the moon to know they will definitely be getting a holiday next year – it has been so unfair on them that their Grannies needs have out weighed theirs this year.      The social worker also suggested day care respite.    Old person was not impressed with this idea, as she doesn’t like spending time with old people because all they do is “moan and complain” – if only she could hear the irony in this comment.          She has though agreed to go along to see what its like.     I think it will be good for her to interact with other people, even if it means she comes home and has something different to moan about!      On a selfish note, it would be nice for a few hours not to have my schedule around making her drinks and food.    We will see what excuses she comes up with for not going back once she has had the visit.        She was also asked by the social worker if she had anything she wanted to do, and without thinking she said her one ambition left in life is to weigh out sweeties in a shop.      I had a phone call from the social worker to say she had spoken to the manager of a local old fashioned sweet shop who has said she would be happy to accommodate this.     I suppose it could be great publicity for them, and hopefully a bit of fun for her.    I have to phone them and arrange a mutually agreeable time for this, but life has been too full on this week to get a moment to do this.

M is in a really bad place still.    His lack of desire to leave the house is bordering on agoraphobia in my opinion.       Getting him to school is a major fight every day, and some days I don’t win because he has such terrible panic attacks that he has to recover from them.    He has also had several migraines recently.      When he was diagnosed as being a migraine sufferer, the doctor did say that she believed they were stress related, so it is not surprising the increase in frequency he suffers with them.       I think as a parent, we want our kids to achieve to their full potential, and we therefore know the importance of their education.     I do feel that by not managing to get him to school every day, is failing him and his future.       His mental health though has to be taken seriously or all the education in the world wont help him in life.       Hubby and I have been discussing how to move M forward but until we get his hospital appointment with the psychologist, we are really in no mans land.      With only a couple of terms before he moves to the academy we are really worrying about where he should continue his education.

D plods along nicely.     He has however had more than a week off.    There is a sickness bug that seems to have wiped out a lot of people, and of course D came down with it.        He looked like he was on the mend, and then it seemed to hit him again!       Its been a long week with him home, as he doesn’t know how to be unwell.   By that I mean he tries really hard to keep going and needs constant interaction and company.    I therefore get very little done when he is around as he trails after me like a little puppy!       Because he doesn’t do the sensible thing and rest to let his body fight bugs though it does mean when his energy level hits the bottom he totally flakes out so I get a few moment of peace – but it never last long.

I think Hubby is also feeling the strain of everything going on in the house at the moment too, as he also ended up with a few days in bed this week.    He had a migraine which washed him out for a couple of days, and then just as he was ready to go back to work, he caught the sickness bug and had a night and day with his head over a bucket!      I just hope I don’t get it next!

So, all in all, it is quite eventful at the moment in my life.     Add to that the starting to get organised for Christmas, and I don’t have that many moments to sort my head out.        When it was arranged for Old Person to have some time at day care, I thought it would be nice to have a few less stressful hours, but I had totally forgotten this weekend is a long weekend from school, with there being two in-service days on Monday and Tuesday, so no chance of a quite cuppa for me!

I think that I can now recognise the start of the downward tunnel makes it easier for me to try to divert myself from entering it.     I am not quite sure how I will do that but being able to try has to be a positive.

For now, I will take a deep breath and put the kettle on.     Drinking coffee is the only thing that keeps me out of prison!!!

Mental Health in my ASDer

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M has been having problems for a long time now.    They got so bad we took him to the doctors who referred him to the Child and Family Mental Health unit at the kids hospital.

A couple of weeks ago we finally had his appointment at the Choices Clinic.      The appointment was just to assess if M was actually in need of any help that they have available – the cynic in me sees it as a way of manipulating waiting lists as a 3 month list for this appointment, before being moved onto another waiting list.         M was not keen to go, as he just wants to shut down to the world around him rather than participate in it.       I managed to persuade him that if we could get him some help, the world might not be so scary for him.

We arrived very early, but to get a parking space at the hospital, that’s what needs to be done!     M was able to have a run around on the grass area before we went in.         I had to fill in copious amounts of forms while we waited to be seen.     It always amazes me the amount of form filling, when all the information is computerised these days so his full medical history is available.

The doctor came out to meet us an instantly M took my hand and stayed very close.      We were told there was a student doctor with him that day – seeing one person was bad enough for M but having 2 there was going to be difficult.     We went through, and M saw a table full of Lego which he went to and sat at in the corner.     I sat and talked about M.      As someone who likes to see the positive in situations, it breaks my heart to focus on the negatives.      Telling a total stranger about how hard life is for my little boy just makes me so sad, especially doing it when the child is in the room.     It makes me feel a failure as a parent that I haven’t been able to make it all better for him.      I know asking for help is the best way to help him, but it doesn’t stop me feeling I have let him down.      Whenever M was spoken to, he looked at me for reassurance, and mumbled a response.       He was just not willing to participate in the meeting other than being in the room.

The doctor agreed that M need to be seen by one of the psychologist about his panic attacks and his unwillingness to interact with his surroundings.     Then he tells us that the waiting list is presently sitting at about 5 months – having waited 3 months for this appointment already it is turning into a long process already.

M was in a total state coming away from there.     It must be horrible for him listening to the person he trusts most being so negative about him and his behaviour.        He flapped the whole car journey home, about 20 minutes, and then took himself away to his room to probably try to process the morning.     He may not speak much, but he takes it all in.

Some days M can be like any regular kid who has a lust for life, giggling and playing, but most days he is withdrawn and uncommunicative.        Getting him to leave the house can be so difficult and near impossible at times.        Initially we had thought there was a problem at school – as there has been many times over the years, but it is not just on school days that he is withdrawn.    Over the recent school holidays, getting him to get dressed was so difficult and getting him out of the house was impossible without a detailed plan of where we were going, how long we would be, and what we would be doing while we were there.

The school term started again on Monday, which meant from about Friday he was getting more and more wound up.     He didn’t speak and had to be forced to take his meals with the rest of the family.       It was his birthday on Sunday, and yet the day was overshadowed by the fear that he would be returning to school.

He barely slept Sunday night with a panic attack to surpass all others that he has had.       Subsequently, school was a no go Monday morning as he finally slept about 8am.        I haven’t managed to get him to school this week yet, and Wednesday, I couldn’t even get him out of bed, and he refused food until the evening.      We have asked the school if they will send some work home for him, just to make sure his brain keeps ticking over – I sometimes wish I had the ability to do home schooling with him, but don’t think I’m capable of that.

It is a very fine line I walk trying to protect a very fragile little man from a world that doesn’t understand him, and he definitely doesn’t get, and making him get on with life.     He tells me he knows this school year is important being his last at primary, so he isn’t burying his head in the sand to the bigger picture.   He just doesn’t know how to be a part of it right now.

I break my heart a little more each time he has   a situation he can not cope with, but I know he has to see me strong and supportive for him.

I do my best, and just hope it is good enough.

Tatty Holidays

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For the past two weeks the children have been home because of the school October Holidays, or the Tatty Holidays as they are known in these parts, because traditionally it is the time for the potato harvest.

The first term back after the Summer break seems to go on for forever, and so I think not just the kids but the teachers also that are ready for the down time.      My two had been counting down the days to breaking up almost since the first day back at the start of the year!       They were ready for this holiday, that’s for sure.

We usually go away for a week during the October holidays but because of lack of anyone to look after Old Person, we had to cancel it this year.   The boys were not happy, as they had also missed their summer holidays, and it made D particularly quite bitter towards his Granny, as he finds it hard to understand that its not really her fault, she is just old and needs looking after.    Hubby though still took a week off so we made sure we could do some family things.

During the first week, the boys and I had some fun, with trips to the park, the local arcade, and even a lunch date with their other Granny in McDonalds –  she isn’t much of a fast food person, but it has just become a thing we do every holiday to meet her there for lunch, and I think the boys enjoy her doing that for them, and I think she actually enjoys her kiddies meal!!

When we were at home, there was noise, a lot of noise!     I think we constantly has a houseful of boys, as D’s mates traipsed through what seemed like our ever open front door.    With a couple of them I did wonder if they were moving in as they seemed to arrive first thing, and it was hard to get them to leave when we had things to do!          It does make me laugh when you ask kids what time they are expected home, and they make up some random time, not thinking I am going to message their mothers to say they are at our house and ask when they want them back!        While having a houseful of kids can be a headache – literally at times, I think it is nice that D’s friends feel they are always welcome here, I know it can be hard for D to go to other houses because he feels awkward, so it is a big deal for him at the friends houses he does go into.

One thing the boys love to do is go swimming, in fact it is always a major part of holidays for them.    It was therefore the first outing we had during the week Hubby was also off.      The leisure pool in the city is the one they like to go to, as it has a wave machine, a rapids alley, and various water shoots and fountains, that rotate in function.     There is also a huge slide, which D loves, but M isn’t so keen as it is one of those enclosed tube ones – I understand his fear as I hate enclosed things like that.         With so much happening in the pool, time goes by really quickly, and the boys have a brilliant time, even if not much proper swimming takes place!

We had a trip to the Aberdeen Science centre.     It’s not the biggest, but it is so hands on that the boys love going there.     Most of the exhibits are get in there and have a go so the boys never know quite where to start and the first ten minute’s is flitting about trying to have a go at everything at once.         There was a special talk about sound, and how we hear.    D got really into it, putting his hand up to answer questions and volunteer to help.      In the planetarium, there was a film about the search for life on other planets.    I thought it was really interesting, but Hubby thinks it’s a load of rubbish!     The boys remain open minded!        There was also a demonstration of experiments with light, which D made sure he was chosen to help with!          It’s a great place to go, as there is regularly new topics that are taking priority, while the standard exhibits get moved about to make them feel new.     It’s not just the boys that enjoy going here!!!!

One thing the boys have been asking for ages is that we could have a day at Codonas, the amusement park at Aberdeen beach.    We picked the day with the best weather forecast – the only dry day forecast for the week, and bought our wristbands.        I used to love going on rollercoasters, and all the rides, but as I’ve got older, I find that just watching them is enough to make my stomach churn, let a lone actually going on them.     Luckily, M isn’t keen on them, and so I went with him, while D and Hubby paired up to go on the scary stuff.      I have to say my favourite thing there is the Ferris wheel as the view from the top is amazing, seeing for miles across the city and up the coast.      M found a gently rollercoaster he enjoyed and went on it about a dozen times.     We met up with the other 2 for a round of crazy golf.      Now remember I said we had chosen the best weather day?   Well it seems the sky had other ideas and drenched us while we played.     It was funny to see people screaming and running for cover for what was a short sharp shower, we just played on, deciding we were already we from the log flume so it made no difference!      We ended our visit with some time on the machines in the arcade, with the boys winning enough tickets to get themselves some Halloween decorations.        It is certainly true when they say time flies when you’re having fun, as it was getting dark by the time we got home!

It was quite a chilled time off for the boys, which is what we wanted.    With M still unsure about going out of the house, it is a fine line we draw between encouraging him with things he really wants to do, and allowing his fears to restrict his movements.

D is already counting down to the Christmas break, but I’m not listening to him just yet!