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Archive for the ‘family’ Category

Some of you may have noticed that I’ve not posted anything for a while now. I’ve decided to take a little break from blogging.

I’m not sure how long my break will be but I promise I will be back at some point.

We have alot of different “stuff’ happening in the MumtoJ house at the moment. We are still struggling to sort out and deal with Hubby’s back injury, sorry but NHS you are very slow. For the government that wants to get people into work and off of benefits, here you have a man who has been unable to work for 2 years now due to his back injury but is desperate to get his back fixed (as best as it’s can be) and get back to work…………….(and a wife who desperately wants to get him back to work and oput from under her feet, I love him but his boredom is driving me mad). Despite doing everything we can, he is still waiting to be seen by a specialist and (hopefully) fixed. His back injury has also has other effects on family life because obviously he can’t play with our son in the same way that he used to 2 years ago.  J is a very active child and has struggled to understand that Dad can’t play on the trampoline and he can’t climb on Dad etc etc and so that has meant I have had to try to take his place and J has had to adjust his play. J has ASD, adjusting his play has not been easy for him.

We have also moved house and have issues with heating etc, which hasn’t been much fun over the cold period that we’ve been having. As well as moving house J has moved school. He’s now going to a small village school AND he LIKES it…………………HE ACTUALLY LIKES IT!!!! Obviously he’s had some changes to cope with and he’s surprised us by coping remarkably well, so much better than we ever thought he would. We’ve seen a huge change in J since starting his new school, he’s much calmer before and after school, he’s talking about what he’s done at school, he’s telling us how he’s played with C or S or J at playtime, he’s eating his lunch and getting him dressed and ready for school isn’t such a big battle. All of which backs up our claim that school was causing his anxiety driven behaviour. So changing school has so far been a brilliant change and is working well for all of us.

We’ve also had Christmas to deal with, ok I know everyone had Christmas to deal with but ASD parents will understand when I say URGH!

I’ve also had some health issues myself to deal with, some of which are still ongoing but I’m not going to get into right now.

And then there’s been the whole issue of the future. Do we return to Australia? We want to but if Hubby’s back doesn’t get fixed is returning to Australia still an option that we should pursue. J has told some of the children in his class that he IS going back to Australia and we are very aware that there is lots that he misses. The education and Healthcare system works much better for J in Australia, so far it has been pretty crap here in the UK. We are still struggling to get a UK diagnosis, so far tests have shown he has difficulties but he scored one point less than needed on one test for an Autistic Spectrum Disorder diagnosis……….Guess Australia supported his needs too well or maybe he lost a little ASD on the flight to the UK. Anyway without that all important UK diagnosis he gets no help or support. So Australia would be and is so much better for J. There’s also the added bonus of an outdoor lifestyle, the weather makes that so much more possible. With the cold weather we are both constantly ill and stuck indoors. That said if Hubby can’t get his back fixed he won’t be able to return to the job that he has done all of his working life and so the question How do we support ourselves financially arises. I’d be happy to return to work but what does Hubby do?

We’ve got lots of other minor “stuff” going on in the background too. So as I said at the start of the post I’m taking a break from blogging so that we can try to deal with some of the things going on in our lives at the minute.

See you soon

Thanks for sticking with me, I’ll hopefully be back soon.

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Am I relieved or sad? It’s a question I’m asking myself today.

Today was supposed to be J’s sports day, his school have decided to hold it in September rather than next Summer?!?!

Anyway due to the rain it’s been cancelled but I’m not sure if I’m sad or relieved. Last year at J’s sports day/carnival he struggled with most of the events but the school had a few children who like J had additional needs and at the end of the day they put all of these children in their own running race to give them a fair chance at winning a ribbon. J came joint third and was very proud of himself. Had he been racing against the other children in his class that didn’t have any additional needs this probably wouldn’t have happened. J loves running and jumping, in fact he has great difficulty staying still, however the only time he is ever able to run fast is when he’s trying to escape. This presents 2 problems, the first being that he would struggle to keep up with the other children and the second being, J does not like to lose.

This year J tells us that he is to compete in the 50m hurdles and a relay race. So I’m not sure if I’m relieved or sad that it’s been cancelled. Relieved because if he doesn’t come 1st, 2nd or 3rd, I don’t know how he will react. I know he’ll be upset, 1st, 2nd and 3rd place children will receive a gold, silver or bronze award and I know he’d be gutted if he didn’t receive one of those. But I’m sad because we won’t get to cheer him on, we won’t be able to get it all over and done with and we won’t get to celebrate him doing his best (I have our own certificate all ready to print, just in case he doesn’t get an award/certificate).

I know it’s great to celebrate our children winning but what about all of those other children? The children whom despite trying their absolute best they just can’t keep up with the rest of the children, the ones that never win the gold silver or bronze. I wonder how they feel when their efforts don’t get rewarded and how much of a bashing their confidence takes. Why can’t schools celebrate the effort of all the children, even a small gesture such as a certificate congratulating them on their efforts would be appreciated.

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I attended a curriculum evening at J’s school yesterday. It was as I expected full of useless information but I also discovered some things that J is going to struggle with. I can’t get into all of our school issues right now, there’s far too many and instead of wasting my breath arguing with them constantly and then the school not listening we’ve decided to talk to our support worker with the ESCO team and then let her deal with the school……………………..You never know maybe eventually they’ll listen to another professional rather than the people who know J best!

Anyhow one of the things I discovered was that his class may be going on a little trip to the supermarket next door to the school! His teacher (whom I have major issues with!!) explained to myself and all of the other parents that had attended the evening, that all of the children love it, it’s a popular trip, they all love the shopping experience, yadda yadda yadda………………. Can you imagine anything worse for a child with sensory needs like J?!?!

Not only will he have to deal with the anxiety of being at school but he’s also going to have to “cope” with a supermarket trip too! Supermarkets are sensory hell for a child like J and he doesn’t “cope” brilliantly with them. Once he managed to work out a way of dealing with the lights and sounds in the supermarket, he’ll have to try to concentrate and listen on what his teacher is saying/instructing the class. Then there’s the other people in the supermarket, which in all honesty is J’s biggest issue with supermarkets. Some people (not to be rude) have a very strong smell, some wear strong perfume/aftershave, some may carry something in a bag that doesn’t have a strong smell but to someone who has an amplified sense of smell it can be overwhelming. And another reason we try to avoid supermarkets with J is when they are busy, (which they so often are), people can often accidentally brush past you, however this can feel very different to a person with sensory needs. J is a child who likes to touch things, likes deep pressure, has a high pain threshold and often doesn’t notice when he bumps himself, however if someone brushes past him, that kind of touch can and has completely freaked him out, the result of which has been a sensory meltdown. I worry not only how he is going to deal with the trip but also how will the school/teacher who doesn’t have a clue about J or ASDs, deal with J if he should have a sensory meltdown and how would the rest of his class react.

I’m sure the trip is lots of fun for the majority of the children in the class but the school need to understand that not all children will and need to be prepared for what could happen, whether they “believe” it or not they have a child on the spectrum in their school who has sensory needs that need to be dealt with and supported!

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It’s been a while since I posted. It’s been a long summer of highs and lows and we’ve been very busy.

At the start of the Summer holidays I had surgery on my right hand, nothing serious, I have Carpal Tunnel in both hands and so had surgery to relieve it. This meant I was unable to use my right hand for 3 weeks and then had to slowly regain use of it, It’s still quite painful around the area now but the scar is only just visible.  It’s been hard work just doing some basic things (such as washing and dressing), and I’ve been really surprised at how much I rely on the use of my hands.

We renewed our Australian visas during the Summer. We discovered that they had just expired and so spoke to a very helpful person at Australia House who informed us that we could apply for a Resident Return Visa, which ofcourse we did. Our visas are valid for another 5 years, we were gutted to leave Australia in January and so by renewing our visas we might be able to return at some point over the next 5 years.

We opted for several days out over the Summer rather than a short holiday. J and I had a couple of days out with my wonderful friend Supersingle mum and her girls (one of which is J’s best (and only) friend here in England). We went to Wickstead Park, which is a small family fun/theme park and also went to the Yorkshire Wildlife Park. J enjoyed both days although was a little disappointed with the wildlife park. In his opinion there wasn’t enough animal interaction, I guess Australia Zoo is difficult to live up to.

 

   

We also had a few family days out, just my Hubby, J and I. We took J to Duxford Imperial War Museum, Cadbury World and ofcourse to the Seaside. He had great fun, in fact he had so much fun all trips were meltdown free!!! He loved looking at everything at Duxford and going to the Sealife centre whilst at the seaside but he was especially impressed with the cups of melted chocolate that he got to sample at Cadbury World. :) And ofcourse we’ve had numerous trips to feed the ducks!

Our housing situation hasn’t gotten any better over the Summer either. We applied to our local council for housing, ticking all the boxes for Housing Associations etc  (as most homes are now with Housing Associations) and so far we have been offered 2 retirement bungalows. Neither were suitable for a family let alone a family with a child that has J’s needs and were both just about big enough for a retired couple, however due to us refusing them our local council have put our housing application on hold for 6 months. Therefore we are stuck living in a house that we don’t really want to be in but it was the only house available to rent when we first arrived back in England. (It’s very hard to rent a house here when you’re previous landlord and references are in a different country!)

And after having a fairly good and relaxed Summer, (other than the housing situation and the surgery), J went back to school 2 weeks ago. He’s already had a week off sick and although he didn’t like feeling so full of cold and coughing, he didn’t mind being off school and was gutted to go back yesterday. Things have already gone from bad to worse since going back and J declared as soon as he exited the school grounds that he’s “had a horrid day!” However then shutdown and couldn’t tell us why! To be honest I have given up almost all hope of communication between the school and ourselves ever working and it feels like they simply don’t want to help/support and that maybe it’s just too much trouble for them. Our ESCO support worker is currently on holiday and we don’t have our next meeting with her, the school and other professionals until next month. We also don’t have our next appointment with the community Paediatrician until next month either and so until then we all just have to bide our time and just try our best to make it through each day. To be honest the nights are becoming harder than the days at the minute, as well as the usual fun and games at bedtimes, J has started to have Night Terrors. He’s been waking up between 3 and 7 times a night, screaming, shouting, panicking, violently shaking, rambling and (it looks like) trying to get something off him. Ofcourse by morning despite us all being a little more tired than usual he has no knowledge of any of his “awakenings”. Not sure what’s suddenly caused them or how to deal with them either but I’m sure we’ll work something out soon.

So that’s it, obviously there’s been lots of other “stuff” but this has been our Summer of highs and lows. As we make our way through Autumn we’re looking forward to trying to work our way through “stuff”, work our way towards Christmas (not too long now!!) and getting out of our rut.

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18 Months ago our world turned upside down……………………and we’re still trying to get things the right way up *sigh*

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The most beautiful eyes in the world……

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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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Exciting times in the MumtoJ house this week……………………………………..After just over 10 weeks of wobbling to and fro and then side to side, J has finally lost his first tooth.

When I say lost, I would like to make it clear as I had to with J, that I don’t mean that he’s actually lost it but his first tooth has fallen out! ;) Well, I have said before that he’s a literal thinker, I should have been more careful with my words………..he was quite upset with me for a few minutes when I told him that it was very exciting that he’d lost his first tooth, then reworded it and explained that I meant his tooth had fallen out…………………to then be told “Why didn’t you say that then?!?! hehehe

Just after arriving back in the UK J’s best friend back in Australia told us that he had his first wobbly tooth. J’s immediate reaction was concern. Would his friend be ok? Would his tooth fall out? Would he bleed? After a chat about how all kids have baby teeth fall out so that their grown up teeth can grow in place of them, he was ok with it. About after his friend’s news J discovered his first wobbly tooth. After the chat that we’d had, his reaction was now excitement, in fact he declared “I’ve got a wobbly tooth, that means I’m nearly grown up now!”

Every time he’s seen someone that we know, everytime, he’s asked “Did I tell *** that I’ve got a wobbly tooth” or  “Did you know I’ve got a wobbly tooth!” He’s wobbled it and wobbled it even more. He’s been abit particular with what he’s eaten, (yes even more than usual), just in case it’s hurt his tooth. And finally after 10 and abit weeks it’s finally fallen out!!!

Since it fell out this morning, he has several times asked if I can stick it back in………………with superglue! I’ve had to explain that whilst Mummy can superglue his toys back together, I can’t superglue his tooth back in because it would be poisonous to put the superglue into his mouth! Ofcourse this made him worry that he had gotten a little bit poisoned when he had put the toys into his mouth after I’d glued them, bless him! We got through that one only to be confronted with the tooth fairy!!

Tonight he’s wrapped it in a piece of kitchen roll and put it in a cup so that the tooth fairy will see it. He didn’t put it under his pillow because he didn’t want the tooth fairy to go too close to him or touch him, so Daddy came up with the cup idea (Well done Daddy!). We’ve had a very long chat about the tooth fairy, in fact we had several very long chats about the tooth fairy. You see at Christmas J really didn’t want Santa to come into our house and to begin with he had some concerns about the tooth fairy. Soooo the agreement we finally came up with is, the tooth fairy leaves a coin (he told us it had better be a £2 coin! lol) and will also leave his first tooth because it’s special. He has a special pot to keepsake his first tooth in but every other tooth that falls out, he will get a coin for and the tooth fairy will take the tooth to keep it in a special secret place.

Here’s hoping the tooth fairy doesn’t make a noise when she goes into his room tonight eh? ;)

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6 years ago today my life changed completely…………….

6 years ago I was resting quietly watching Prison Break when my water’s suddenly broke a month earlier than they were due to.!

I’d had a difficult pregnancy. I’d had 2 bleeds which quite frankly had us crippled with fear and had us thinking that once again the worst was going to happen. When we’d finally reached 14 weeks, further than we’d ever got before, we’d had our first scan and finally felt brave enough to tell our parents, then went on to tell other important people once we’d had a second scan and had passed the 20 week mark. By 20 weeks I had developed Carpal Tunnel Syndrome, (something that has remained with me), and SPD (Symphysis Pubis Dysfunction). Both meant moving around quickly became painful and difficult…….Little did I know that over the next few weeks this would get so bad that I would become housebound except for hospital and midwife visits and Hubby would be cutting my food up for me, filling forms in for me etc because my hands and the lower half of my body had become pretty much useless. I then began to swell, really swell…………my hands, my feet, my face and everything in between. My blood pressure rose and I developed Pre-Eclampsia. At 34 1/2 weeks I started having contractions during a hospital stay (for the high blood pressure), thankfully with medication labour was stopped. I returned home only to be back at the hospital a week later begging for my baby to be born! I was in so much pain! The doctor and midwives assured me that they didn’t deliver babies that early and that they had booked me in to be induced the following week…………………………………that night my waters broke!

After 25 hrs of contractions every 2-5 minutes, alot of gas and air, (Hubby said I really did look like I was flying high ;) ), and a spinal block that had only worked on one side, the doctors and midwives realized there was a problem. J was struggling……………I was struggling and I can still hear the Doctor’s words, “we need to get this baby out now“. I was whisked off to theatre whilst Hubby was left standing in our side room, a cleaner later brought him down to the theatre room!

A little while later I heard one of the most beautiful sounds I’ve ever heard, my baby boy’s first cry! Hubby held him close to me so that I could see his beautiful face and stroke his tiny fingers. I’d never known love like that which hit me at that very moment! :)

my beautiful baby boy xx

After a brief couple of hours together J was taken away to Special Care, it was another 2 days before I got to see him again. But after a week in hospital we finally got to take a gorgeous baby boy home, it was Mother’s Day. :)

Six years have passed so quickly and he has grown so fast, it’s hard to believe that six years ago I was sat watching the TV ……………

Hope he has a great birthday :)

Mummy loves you heaps little man, I’ll never forget the day that I saw you for the first time. The love I felt then has simply grown over the past 6 years……………..You’re the best thing that ever happened in our lives and we love you :) xxxxx

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