Archive for the ‘feelings’ Category

A big black cloud seems to keep following us at the moment………….


Would you be kind enough to now GO AWAY!   ;)

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Yesterday I was filled with hope……………… Hope that things couldn’t get any worse right? I mean, we’ve had a pretty tough 18 months but the last 6 months things have gone from bad to worse.

We were forced to come back to the UK, there was nothing else we could do (although looking back now I kinda wish we’d pitched a tent in a friend’s backyard and stuck it out n Oz!). Relationships have changed with family and friends, not just because we’d been away for almost 2 years but also because some don’t know and can’t “deal” with J’s behaviour and I just can’t be bothered to deal with them. That might sound harsh but I’m being honest, we’ve got alot going on at the moment which has and is causing alot of stress and I don’t have the energy to deal with those people. We have housing issues which I won’t get into right now but they are causing us alot of stress right now. We’ve had various tests done regarding our recurrent miscarriages and have been told that we may be referred to a specialist in London. Hubby is still seeing specialists regarding his back and I don’t think I could explain how desperate he is to get it fixed and to get back to work. I’m seeing a surgeon this month due to my Carpal Tunnel. We’re still waiting to see the Peadiatrician in order to get J’s all important UK diagnosis, cause obviously all the specialists he saw in Oz didn’t know what they were talking about and we’ve just wasted.

However the biggest cause of stress this year has been school! Ok so J has always had school issues and I’m pretty sure he’ll always have issues with school but this year (and he’s only been there for 4 months!) has made last years school related issues look not so bad! He’s not wanted to go, (I know nothing new there right?), he’s become so anxious about school that he worried himself sick and so had to have the last day of last term off because he simply couldn’t cope! He’s both expressed his anxieties with negative (and sometimes violent) behaviour and has completely shutdown. It takes almost 2 hrs each and every school night to convince him to get into bed due to his anxieties about school the next morning. The school really doesn’t understand Autism and in all fairness we knew this when we chose it but they did seem like they wanted to help and said all the right things etc……… ofcourse not much of those things have happened *sigh*  His current teacher really doesn’t understand Autism or J, she and a TA have attended a course about Autism but neither seem to have gotten much out of it, they say they never see any ASD or anxiety behaviours at school, so obviously they don’t see him flapping, constantly bouncing,  the literal thinking, the chewing of gaping holes in his mouth, the dirty issues he has or the lost look in his eyes. And his TA has even said to me “To be honest I don’t treat him any different, I don’t make any allowances, I don’t see the point!”……… yep those were her actual words!!!

But yesterday we met what will be J’s teacher from September. It was awful, she left us feeling that not only does she not believe in ASD but she also doesn’t want to! Some of her comments included “All parents find it hard the first time round” (she actually said this one twice) and ofcourse the comment that all parents hate “All children do that, it’s normal for children his age!” She actually made his current teacher look like she understood and was supportive!! It was so bad that I wanted to scream when we left and very nearly cried. So now we’re stuck, we can’t simply change school due to our housing situation (long story) but we have serious concerns about sending him back to his current school in September with that teacher! :(

Just gotta hope we can sort things out over the Summer holidays I guess………..and if we can’t, who knows what we’re going to do :(


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The Thinking Chair

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This was a very hard post for me to write, those that visit regularly will know that my Nan meant a great deal to me.

Last Saturday marked 7 years since she said goodbye to us and joined my Grandad in Heaven. On that day every year since that day back in 2005 I experience mixed feelings. Over the last 7 years I’ve spent alot of time writing these feelings down and a while back shared some in a poem I wrote to my Nan, The Final Goodbye.

I know I’ve shared this story before (here) so don’t want to bore everyone with it all over again but as I’ve said (many) times before writing is how I deal with how I’m feeling. I keep going back to a few weeks before she died, we were out walking, (she in her wheelchair, me pushing), we made daisy chains, she was so happy and relaxed and when I placed a crown of daisies on her head I told her she looked like an angel………..she replied with “I’ll always be your angel”. Those words keep going around in my head, did she know what was about to happen, did she know what would happen over the next few months………..or years? My Nan had Alzheimer’s  and so at the time I thought it was simply “one of those comments” that she often made but a just few days later those words meant so much more to me and today I don’t think I can put into words just how much those words that she said to me actually mean. A few days after that outing my Nan had a stroke, she fought so hard to stay with us but it was just too hard. I told her that it was ok for her to go and that we’d be ok, she looked at me with so much sadness in her eyes I could feel my heart breaking right there. I know people say that when someone they love dies a part of them dies too, well that day a part of me did die, I was broken and didn’t know how to deal with my grief. Even now as I sit writing this I can feel a huge wave of grief washing over me, a part of me is missing and it’s a part that I can never get back.

However the anniversary of her death is also the anniversary of the start of my pregnancy with J. 9 months after I’d lost a huge part of my life, an amazing and wonderful new part of my life entered the world. In a way he saved me, I was so lost in my grief when my Nan died and I wasn’t coping, I just couldn’t find a way to move on. When I discovered I was pregnant, although cautious after 4 miscarriages, I knew this pregnancy was going to be different, this baby was a precious gift from my Angel,my Nan. I’ve always known he was special, I just didn’t realise just how special he was until recently. Going on to have another 2 miscarriages has meant me having a whole lot of tests being done, (and I’m back at the hospital next week), and I’ve been told that they’re not sure why I keep miscarrying but they know it’s me with the “problem” and that I may only have a 20% chance of having a successful pregnancy……………… See why that makes J even more special. :)

So with everything going around in my mind at the moment, I’ve had alot of mixed feelings about the anniversary this year. I miss my Nan everyday and if I could have one wish it would be to have just one more day with her. I know that feeling will never go away. I know that I’ve never really dealt with my grief and I don’t know if I’ll ever be able to fully deal with it. I know that I’ve often said to people that know me, J is my gift from my Nan and I’ve always believed that. But this year, with recent events in our lives etc I’ve really started to believe that. And I believe J was given to us for a reason, I needed something special and that something couldn’t get any more special than my precious boy.

Last Saturday as I watched my precious little man running around a local park, my heart smiled as I watched how free and happy he was. He didn’t know what a sad anniversary that day was but as I watched him I realised he was showing me that my Nan was free now, she’s reunited with my Grandad and her babies, she’s happy and at peace. And as I watched him those words rang out in my head once more “I’ll always be your Angel”.

I don’t know what this means, maybe it means I’m finally beginning to move on and to deal with my grief. We’ll go to the cemetery to visit my Grandparents tomorrow, I couldn’t do that last week, the feelings were too raw, it was too hard to face them but this week I feel a little more at peace with it all now and it’s all thanks to my special little boy.

My Dearest Nan,

I thank you for the gift of J

I thank you for showing me the way

I thank you for always be there

I thank you for loving enough to care

I thank you for memories to treasure

I’ll thank you for your love forever x

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I’m wondering is it possible to worry yourself sick?

J has had a rough time recently, he’s had to deal with everything that been happening at home, (although he doesn’t know the full story, he’s still had to deal with it), but he’s also had to deal with his biggest anxiety………. SCHOOL!

We had a great weekend last week and both bedtimes lasted for less than an hour…………….the Sunday night happened and every bedtime since then has been pretty hard going.

This has been a tough week for him at school. Monday he went to his first proper planned assembly/worship. Not only was this a huge thing but even before going there he had to deal with a big change……….. Every morning J has been dropped off at the school’s reception and taken through to his classroom, on Monday he had leave 1/2 an hour earlier so putting his morning routine out and then he had to go into school through another entrance, straight from the playground into the classroom. Now I know to alot of parents this might not seem like a big deal but parents of ASD children will know this was huge………..really HUGE and alot of change all at once for him to deal with.  He seemed to deal with it “ok” but by bedtime he was showing signs that he wasn’t “dealing with it” quite as well as I’d thought.

Then on Wednesday he went in early again this time to have some one on one time with his teacher whilst the rest of the school were in assembly. Again he went in early, and through the door he usually exits school. However this time he had been promised that he wouldn’t have to go to assembly…………………………the first thing he reveals to me when I pick him up that afternoon is “And I did have to go to assembly so you and Mrs H lied to me!” He wasn’t happy about it! What had actually happened was he and his teacher had taken his class to assembly, where he had sat with them for a few minutes and then once they were all settled J and his teacher returned to the classroom for their 1:1 time. Ofcourse he wasn’t happy, he had been promised that he wouldn’t have to go to assembly and then he had been taken to assembly, despite not having to stay ……………. I can see why he thinks we lied. *sigh*.

When I picked him up from school on Wednesday we were also informed that his teacher would not be in school the following morning and that J would have a supply teacher for his 2 hrs at school. Sometimes I wonder what some people must think I mean when I say he needs to have prior notice of changes. Ok, so I know some can’t be helped, people get sick etc but she was going on a course. I just don’t understand why they couldn’t have said something earlier in the week, instead we had almost no notice. J had a really tough bedtime and then morning. Yesterday he had a huge meltdown claiming to be dirty (which is part OCD and a huge part a way of showing his anxiety), he had tears, yelling, constant asking if he or the things he touched were dirty and then refused to touch anything, he sat on the bottom step with his hands in the air. (In fact, thinking about it, his “dirty” quirk has been a little overboard all week!)  A few times before leaving for school he asked “what if the supply teacher doesn’t know that I’m not having lunch at school and doesn’t let me come home?” and “What if the supply teacher makes  me do something that I can’t do?” and …………..well you get the picture.

Today it’s the schools Jubilee Party. This should be a fun thing but for a kid on the spectrum it can be hell! His first panic was clothes…………. the children have been asked to wear red, white and blue…………. J’s first response, “but my school uniform isn’t red!” (he wears a blue jumper and a white t-shirt) and then “I can’t wear my clothes, I have to wear my school uniform!” after we tried to explain he could were whatever clothes he wanted to school just for one day. After several conversations we gave up and told him he could just wear his school uniform and red boxers ;) One problem solved, we thought. Next worry was food. The party will be after lunch and there will be sandwiches and ice lollies…………. J’s response “But I don’t like ice lollies and we have to eat them Mrs H said everyone will be having them!” And “What if they have dirty hands when they make the sandwiches? They’ll (the school) get cross with me if I don’t eat them!”  Convinced his teacher to tell him he doesn’t have to eat anything if he doesn’t want to. I thought problem 2 was solved, now I’m not so sure. Next problem, “What if it’s too loud or if someone touches me?” …………………. ok the issues regarding today have gone on and on this week.

However last night he suddenly became ill. Coughing and saying his head hurt. He was awake several times through the night and then up at extra early this morning but just seemed very lethargic and lay on the sofa for the first hour of his day. He did however mention school several times too, asking if he had to go, if he was too sick to go, if the party would make him feel “more poorly” etc etc…….So I’m wondering is he really sick or has he made himself sick with anxiety. He had a temperature and you can’t fake that ………… right? …………… I don’t know but I’m wondering. He has had a really tough week with alot of changes and alot of “stuff” so I really am wondering if he’s worried himself sick. He has made himself  sick with worry before, again over school so I just don’t know.

Anyhow as it’s the last day of this half term and most of the day is the party so I’ve decided to keep him home, hopefully he’ll relax a little over the next week and start to feel a little better.

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