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Archive for the ‘why?’ Category

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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So over the weekend J and I had a “Therapy Day”, to be honest we both needed it for different reasons.

We spent the whole day doing stuff together, we did some food therapy, used Theraputty, drew pictures, blew bubbles, did puzzles and even did some painting. It was a very busy and pretty tiring day but it was just what we both needed. J was very relaxed after his day of “therapy” and spent some time relaxing with Mario and then playing with his Dad before going off to bed. Whilst he was playing Mario I started writing some things down, just to clear my head. And then once he’d gone to bed I wrote some more. I wrote from the heart, as I’ve said before I’m not great with feelings but I like to write things out. I have a few more appointments coming up over the next month that I hope will give me some answers and maybe a little more hope……….. who knows maybe they’ll even start to heal the mind games and grief that’s troubling me at the moment.

But anyhow, this is what I wrote …………….

I don’t know if I can, I don’t know if I dare

Open my heart to begin to share 

How I’m screaming inside, how I really feel

Because then I have to admit what’s happened, it’s real

*

I try so hard to lock my feelings inside

But sometimes they’re too overwhelming for me to hide

The emptiness inside fills my heart with pain

As the thoughts in my head drive me insane

*

So many thoughts going through my mind

Trying to understand why life’s so unkind

But as the words go around they hurt my head

And inside I feel nothing, I’m empty, I’m dead

*

To lose one baby too soon broke my heart

But to lose five more has torn me apart

My heart’s trying so very hard to understand

Why we’ll never get to hold their hands

*

It doesn’t make sense, I keep thinking “why not?”

And then “Should we be happy with what we’ve got?”

But maybe, just maybe I want a repeat of the joy

That I get each and everyday from my special boy

*

But there’s a pain inside, the scars run deep

It overflows and wounds begin to weep

I don’t know what to do, again do we try?

How?   When all of our hope has run dry

*

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AARRRRGGGHHHHHHHH!

I’m so cross today! We took J to his Peadiatrician appointment today. Our letter told us that although we were going to the same clinic that we had been to previously and had seen a Peadiatrician who had refused to diagnose ASD (and in fact told us that was nothing unusual about his behaviour asking if I had considered that I may be depressed!!), we would be seeing a different peadiatrician…………….So image how our hearts sunk when that very same peadiatrician called his name!! As soon as I saw Dr W I knew that today’s appointment would be a complete waste of time!

I could feel my heart pounding, my hands shaking and my eyes starting to well up as soon as we entered the consultation room.  I just knew that the uphill battle we were already facing had gotten even steeper!

Basically we were told again that just because he was diagnosed with ASD in Australia, that doesn’t necessarily mean that he is on the spectrum! That the paperwork we had brought with us didn’t really mean much! And that we have to start from the beginning all over again…………….Yep we have to go through the whole assessment and diagnosis process all over again!!!

I don’t think I can put into words how cross we felt when we left the clinic. She might as well of told us that everything we had done over the past 2 years had been a complete waste of everyone’s time and energy! That we had wasted the last 2 years of our son’s life! And that we were just rubbish parents who couldn’t cope with a difficult child!

In all fairness the school that we chose for J have been fairly supportive and say they will do what they can to support us in getting J some support at school. J’s teacher and aide are also attending a course about how to support a child with Autism……………but a UK diagnosis was going to help them in their quest to get him support so much. We’ve also been told that we needed a UK diagnosis in order for the school to access advice and support from the Autism Outreach Team. So their hands are tied, there isn’t much more they can do without a UK diagnosis.

So where do we go from here?…………….I guess we have no choice but to start from the beginning again! :(

 

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We’ve had 2 meetings this week both of which have created a mixed bag of emotions.

The first meeting was with a new OT, The OT and Speechy that we were seeing at the end of last year was a complete waste of time. Alot of our funding was used up and no progress was made, no sensory diet created………nothing. We were under the impression that this was one of the only places in our area to go, that accepted the funding, however at the beginning of this year we found a wonderful new Speech Therapist who in a short space of time has already helped a great deal and J responded well to her. It was her that gave us the details for J’s new OT, yes we will be seeing her again!

The OT that we met with was very switched on and (we felt) knew exactly what she was talking about and within 10 minutes of observing J whilst talking to us she had already picked up on a couple of J’s quirks/issues.  (very impressed)  During our hour with her she discussed the possibility hat J may have some ear problems that we should look into, he gets alot of ear infections and that along with a few of his “issues” could mean that there is a problem. This raised alarm bells with us because as a baby J was admitted to hospital overnight because he was unwell, when the Doctor “did his rounds” the next morning we were told that J had a narrow ear canal but because he was so small it would “sort itself out”, so ofcourse we are now asking ourselves if we should have pushed to investigate it further and if it is related to some of his ear issues now. The same Doctor also did some tests on J’s gut (that was the reason he was admitted overnight) and we were told that his bowel was slightly twisted but again because he was so small “it would sort itself out”. The OT that we met with this week feels that J could also have some gut problems, and so again we are wondering if we should have pushed to have it investigated further at the time…….. I guess when the experts tell you it will be ok you believe (or want to) that they know what they’re talking about and so leave it at that. *sigh*   Anyhow she has recommended that we see our GP and get a referral to a Dietician/Nutritionist, an Allergist and to get his ears sorted. Unfortunately we don’t have the best GP and so before we can sort all of the above out I have to search out a new GP……………..asap!  On the upside we were very impressed with the new OT and despite it being abit of a drive to see her we will definitely be going back to her :)

Our second meeting this week was not so great………………………. you’ve guessed it …………. the school!

It started badly when it was assumed Hubby would be outside playing with J and not part of the meeting…………….. he became a little cross at this suggestion and let rip at the Psychologist who went outside to chat to him. I should point out at this point that this was Psychologist who had been invited to the meeting despite the fact that she had never met any of us before and as nice as she was, she didn’t know any of us or anything about our situation. Also attending the meeting was the Principal, who had also never met any of us before, (I guess in a school so big it would be hard to know every pupil but since they get extra funding because J attends you would think they might make an effort to know who the special kids are that they are getting the extra funding for).

Anyhow once Hubby and everyone else was inside the meeting began. We tried to explain some of the issues we had been having and some of the things that J had told us but yet again felt like we had wasted 90 minutes. We told them that J had informed us that *Billy* had been mean to him and was bullying him, the response we got was smiles and nods……………. if they know it’s happening why haven’t they addressed this issue?!?!?!   We went through various issues with them and basically got the general feeling that we weren’t being listened to at all. We felt like we were going around in circles…………………… To wrap the meeting up the Principal asked if they were to work on the food thing and if that was what they should be doing………………….. I responded with “Well just getting him to school should be first!”        Do you see why we felt we weren’t listened to at all, how on earth did she get that his food issues were something to be worked on first when we had been explaining some of J’s issues with school and just how much he doesn’t want to go school and some of the behaviour we receive as a result of him not wanting to go to school?!?!?

Anyhow, we’re now counting down the days until we go to see the Surgeon about Hubby’s back and hoping for good news, (although the way this year is going so far, maybe we’re hoping for too much). After we have seen the Surgeon and we know what’s going on with Hubby’s back we will be making some important decisions about our future. If we get the good news that we are hoping for J may be ending his time at that school sooner rather than later and when we are searching for his new school we will be taking with us a list of questions to ask the school and a tick sheet of requirements, (smaller class sizes will be top of the list, as this is one of J’s biggest issues with his Prep class). Until then we just carry on as we are and wait and see……………………….

Oh and J is off school again today, because when you’ve been up most of the night and you feel the way that Hubby and I are feeling about the school, when you have your child screaming, crying (real tears, not the temper tantrum type) and physically begging you not to make him go to school, you’re just too tired and heartbroken to fight………….. what would you do?…………………………….. maybe I should ask his teachers that next week!

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I’ve always thought that things always happen for a reason. Sometimes things happen that we don’t want to happen but that’s part of life, some of us are luckier than others but still everything happens for a reason……….. right?

Almost 13 years ago I sat holding my Granddad’s hand and watched him peacefully pass away. That morning I had been told not to go to the hospital because he had had a rough night and needed to rest. Well I’ve never been one to do as I’m told and if my Granddad had had a rough night then I wanted to be there with him, so I went to the hospital anyway. My Granddad was my father figure growing up and whilst I felt my heart getting ripped from my chest when he died I managed to hold it together long enough to make the call to my Mum, who was with my beloved Nan. That was it, the reason I’d been there that morning, so that I could be there with him, so that I could be the person to tell those that mattered the devastating news rather than a stranger calling them but most importantly so that my Nan could take a little comfort in the knowledge that he wasn’t alone.

A week after my Granddad died, (around the time of his funeral), I discovered I was pregnant, it was my 3rd pregnancy so I was very cautious with my feelings. Around the same time my cousin also discovered that she was pregnant. Unfortunately I again went on to miscarry however my cousin went on to have a healthy baby boy, who looks, (in my opinion), very much like my Granddad. So whilst we were forced to say goodbye to my Granddad, maybe it was to make way for my Nephew…………. afterall everything happens for a reason, right?

When I said goodbye to my Nan I thought it would be something that I could never recover from. My Nan was my world and I would have gladly given my life for hers. When she died my world stopped for a while…………….. then I discovered that I was pregnant again, (5th pregnancy). Despite the usual cautiousness with my feelings something felt different this time around, I felt that this baby was my Nan’s final gift to me and that she was watching over us to ensure a safe arrival. I had various difficulties during the pregnancy and J was born a month early by emergency cesarean but he was and is perfect. I still miss my Nan everyday and I’m sure I will for the rest of my life but I take a little comfort in my belief that everything happens for a reason. Maybe she had to say goodbye to us so that she could watch over J as he entered the world, I often wonder if she knew what the future held. And maybe we had to go through the pain of the previous miscarriages so that when J entered our lives we would really appreciate just how special he was and would love him all the more, (if that’s possible).

So I’ve been thinking alot recently about my belief in “things happen for a reason” and I just can’t see it right now. I can’t see what possible “reason” there would be for us to go through another loss, surely we’ve had our fair share! We’ve had a variety of tests done now, my arm is beginning to feel like a pin cushion, the results of which we’re still waiting on. But what’s really not helping is the way the hospital seem to be dragging things out. It’s too hard to go into details but right now we’re in limbo…………. I’m not miscarrying in the usual way (whatever that means!!!), no-one wants to do the necessary surgery until certain tests results come back but there’s only so long they can wait………….. it just seems to be going on and on. Do they not realise we can’t move on until certain decisions have been made …………….. and I have a very confused little man at home wondering what’s going on, wondering if his mummy has to stay in hospital or not and asking questions like “will you come home from hospital?”

I just wish someone could give us some answers because right now I really can’t understand why all of this is happening to us.

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It’s a good question, one that I’m not sure of the answer to. I’ve not posted for a few days now and I may be quiet for a while longer, right now my head and my heart are feeling a little scattered, I’m hoping by writing it all down I can release some of the feelings I’m trying to keep on top of.

This month I discovered that I was pregnant and to say that it was a shock would be an understatement. As well as shock the news came with a huge bag of mixed emotions. On one hand very happy and excited that we could be welcoming a new addition to our family but on the other hand fear and dread. Those of you that have read my blog for a while will know that my hubby and I had 4 miscarriages before we welcomed J into our life. So once the shock had sunk in the next emotion felt was fear……………… fear of what might happen, fear of how we’ll cope if we lost another baby, fear of how we’d deal with J wondering what’s going on, (he can usually sense when Mummy is sad or if something is wrong), just plain old fear! Only for a brief moment did I start to think about how exciting and how wonderful it would be to welcome a brother or sister for J into our life, then the fear started to creep back into my head and my heart.

We were instructed to go for an early ultrasound due to my history and as we entered the door to the ultrasound room we wondered what the next 10 minutes would bring. The sonographer was chatty and very pleasant so we wondered if things were starting to look good but then we got “the look” and she told us that she was concerned and that we had to return in a couple of weeks for another scan. At that point we knew something was wrong but she had not explained her concerns so all we could do was cling to the small piece of hope that we had left.

All of that hope was taken away the following morning……………… my doctor rang me to explain that he had the results of the ultrasound and it didn’t look good, (I’m sorry but this is pretty hard to write and I simply can’t and don’t want to go into details). He told me I had to have more blood tests and return to see him after 2 working days. After returning to see him he told us that the first results had not come back as he had expected and I would have to repeat the tests.  Today those results came back and the doctor told us the bad news. Tomorrow I would have to go see the specialists at the hospital because I was indeed going to miscarry. I can’t put into words how I felt, how I feel. It was an incredibly devastating blow. All of the feelings felt too many times before came flooding back tenfold and then on top of those feelings came the fear and worry of how we were going to cope and explain things to J. Each miscarriage has resulted in a hospital stay and a period of rest afterwards, I’ve never even spent one night away from him. How do you explain to any child, let alone a child with ASD that Mummy can’t put him to bed or come to him in the night when he yells out because I have a poorly tummy and have to go to hospital, how do we explain that without creating huge anxieties. Then more devastation swept over me when the realisation hit me, not only is all of this happening but it’s happening around J’s birthday, I can’t ruin his birthday he’s so incredibly excited, how could I do that to him?!?!

I’m very lucky and have made some wonderful friends here in Oz. Friends who for the past week or so have offered help, support and understanding, but most importantly have cared. Thankyou to you lovely ladies, you know who you are xx

I’m sorry if I’ve “gone on abit” but I don’t know how else to get some of these feelings out, writing is a powerful tool in trying to help me understand and come to terms with everything that’s happening at the moment. x

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Today began with so much hope. Firstly J only woke up once during the night, (he decided that he wanted to get up but I managed to convince him to go back to sleep just for a little while longer), and for the first time in ages I actually got a total of around 6 hours sleep, so was feeling a little less tired this morning.  Secondly J ate his breakfast without argument, (doesn’t happen very often), and got dressed once again without argument.  Then he asked if he could make a bracelet, he likes to play with my beads so I thought why not……. he sat (yes still, in one place!) for almost an hour making not one but 2 bracelets and playing with beads. I couldn’t believe it, whilst helping him, some of the beads were a little tricky for him to thread, I actually managed to have and enjoy a quiet cup of coffee.  Then he asked if he could play with his “clay” (putty), but after 10 minutes decided he’d had enough and it was too sticky, but no meltdown. He then really surprised us and asked to do a painting, not wanting to miss an opportunity for him to willingly get messy I quickly got the paints and brushes out. He painted 4 pictures and then declared that he needed to go in the bath because he was dirty………………… That’s when it all began to change!

First he had issues with the temperature of the water, then he decided to empty half the bath onto the floor, the walls, the cabinet and anywhere else he could make it reach! Then had meltdown when he got out the bath, apparently there was still a drop of water in the bath and I had taken him out of the bath too early!

Since getting out of the bath, we have issues with what he wanted to eat, do, watch on TV and so on.  He’s been screaming randomly, throwing chairs, hitting, kicking, shouting, biting and climbing on the table. I just don’t understand what’s going on with him this week.

We usually have a few meltdowny days then a couple of “good” days but this week it’s just been one meltdowny day after another and I’m tearing my hair out!!!    It’s so frustrating not knowing what to do with him, how to help him or understand why he’s doing what he’s doing, what it is that has him feeling this way and so on…………..

Maybe it’s the weather, maybe it’s all the new rules, maybe it was going away, maybe it’s all the new people he’s been seeing……….I just don’t know…………… I’m just hoping that tomorrow it’s going to be better………………… fingers crossed

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For the past week I’ve not only been feeling rotten, (starting to feel better now) :)  but J’s behaviour seems to have gone into overdrive once again.

A couple of weeks ago we started going to a Playconnect group that meets locally, this is a group for parents with ASD children. The children and their siblings, (if they have any) play with different activities and toys set out for them whilst the parents, (just Mums at the moment) can chat about issues they going through with their children, help they’re accessing or whatever else comes to mind.  It’s a fantastic group, it’s great that the kids can just be themselves and as we are all parents of ASD children we all understand some of the issues that may occur and don’t feel, (at least I don’t) that the other mums are judging our parenting skills when they have a “moment”.

Anyway on Friday J had a few “moments” whilst we were at the group, then continued on the way home, calmed a little when he went to “school” (ECDP), but then started once again when I picked him up, even having an outburst in the playground.  These outbursts have continued since then, over the weekend we had a number of biting incidents, (he gave his Dad quite a nasty bite), lip licking, so making his mouth very sore, so much screaming, shouting, hitting and kicking etc that I lost count of how many incidents we actually had.

Monday I was attacked in the morning, he refused to eat at lunch and then we went to therapy.  He was pretty good during therapy, but then it ended and J decided that he NEEDED to play his own game. Of course this couldn’t happen because our time was up, cue mini meltdown………… He tried to attacked his 2 therapists, myself and then another therapist who came out to see what all the noise was about and then pushed all of the lovely receptionists files off the desk, (they went everywhere!). It was a nightmare, shouting, screaming, hitting, kicking etc etc.  Once home he spent about an hour on his computer game but then started again when I said “time for a break”, once again, hitting, screaming, kicking and even a little bit of an attempted bite. When our friend came around that evening J kicked him too, just because!

Yesterday he was supposed to be going to playgroup/daycare but that didn’t happen! By 8am I was pulling my hair our and ready to have a meltdown of my own!!!!!    He was awful, I was hit, pinched, shouted at, screamed at, kicked etc etc and that along with the constant disagreeing with everything I said, the constant whining about going to playgroup, and the refusal to get dressed just wore me down completely.

All of this was because he didn’t want to go to playgroup!!  So I gave in and let him stay with me, of course this meant taking him to the shop with me and **horror** the post office. Shop and post office = meltdowns!! and OMG they were good ones!!!

 

We started our new rules at the weekend and part of our new rule system is a traffic light board that I made and a visual board with his favourite things on. Basically he starts everyday on green and with all his favourite things and each time he has a “moment” or a “silly” as we call them at home he goes to amber and then red, when he goes to red he loses one of his favourite things, e.g computer games, for the rest of the day. Well I guess I don’t need to tell you that he’s been losing lots of his favourite things!  Yesterday was the worst and by 10am he had lost all of his things and only had his bedtime story read by me left on his chart, (something that we don’t really want to take away because we already have issues at bedtime and a story is part of his routine).  So when I took the last thing off his chart I was then “S**t now what, he’s been this bad already, now he doesn’t really have anything to lose!”  So I did the only thing I could think of, I put him back to green and told him next he would go to amber, then red and he would lose a bedtime story read by Mummy, it’s all in the wording, this way he could still have a story but Daddy would read it, (J prefers Mummy to read his bedtime story). I also told him that if he was on amber and was good for 30 minutes he could go back to green. Needless to say the rest of the day continued with him going from green to amber to green and then amber again.

We’re wondering if some of the negative behaviour is due to us trying to fit too much into his life at the moment, he’s now having therapy, daycare, swimming lessons,school, playconnect group, and of course the new rules, maybe it’s just all too much for him. It’s all meant alot of change for him and he doesn’t cope with change well and it also means we have a very busy week, maybe he’s getting tired, behaviour is always worse when tired and of course he doesn’t sleep brilliantly either.  We  discussed what we could maybe cut down on and J’s only input was “I don’t want to go playschool”, screamed at us of course, several times.

So we’ve given in, we’ve given notice to his playgroup and next week will be his last day there, (I have one more day of freedom!), J is VERY happy with our decision but even this hasn’t improved the behaviour much.  Although he’s seems calmer so far this morning.

Ideas anyone?  Are we trying to do too much? He’ll be starting prep in January, he’ll be doing 3 days a week mainstream and 2 days at the early intervention centre, (another change to deal with), so his week will become even busier then. We’ll probably end the swimming lessons for a while then but therapy will still be happening and when prep starts he’s going to have to cope, of course that means that we’re also going to have to cope with the effect it will have on him too.

Anyone got any ideas?  HELP! :)

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I give up, it’s official!

I was discussing some of J’s mess and dirt  phobias/quirks with some of his lovely ladies at his playgroup yesterday and then I spent most of last night thinking about our conversation.   J hates getting dirty in anyway at all. I think I’ve mentioned before how he got a drop of water on his dressing gown and so had to change everything, (pj’s, slippers and so on).  Well, for the past couple of weeks the messy “thing” has gotten so bad that he now won’t even open the fridge door, cupboard door or any door for that matter because he’ll get dirty hands!!  Let me make it clear to you all, we don’t live in a dirty house,  I sweep everyday, I hoover 3 times a week, I dust once or twice a week, (depending on the need), I mop 3 times a week, I clean all the cupboards, sides etc on a regular basis…………and so on.  However none of this is enough for J, he still insists that something’s dirty, (the floor, door etc).

When I arrived at his playgroup to pick him up he was playing outside in the garden ……………. wait for it…………… in the bark…………… with 2 other children!!!!!   I watched him playing for quite a while, mostly because I was shocked and amazed that he was not only playing with other children but he was also playing in something “messy”.   Hooray!!!!      Then he spotted me and we got his bag ready to go home………………. except he refused to get his drink and lunchbox out of the fridge because he’d get dirty hands if he touched the fridge door!!!   Arrgghhhhhhhhh!      I felt like screaming,  I tried explaining that he’d just been playing outside in the bark which was much dirtier than the fridge door, how did he respond?……….  He lifted his hands to me and said “yes but I don’t have dirty hands do I?”     Well I’ll be honest, I didn’t know how to respond to that so I gave in, opened the fridge for him and away we went.

Whilst I was watching him play I was chatting to some of his lovely ladies. Miss M was telling me how J had been playing outside in the bark really well, not bothered about getting dirty but when they came in wouldn’t sit on any of the chairs………. too dirty!!

J struggles to use cutlery, (well he’s never really eaten anything that requires the use of it!), he can use a spoon but he’s pretty clumsy with it, so usually he just uses his fingers to eat.  Mealtimes drive me crazy, he’ll only eat certain foods, won’t/can’t possibly sit at the table, usually has to walk or bounce around whilst he’s eating, he always complains about his hands, mouth, clothes etc being dirty whilst he’s eating, quite often puts too much in his mouth, so ends up spitting lots out, but what really drives me crazy is the crumbing!   He crumbs what he eats as he’s eating and it makes a huge mess. It doesn’t matter what it is, even cheese, don’t ask me how he does it but he has to crumb it.  I don’t understand how a child who hates mess and dirt so much can make so much of it whilst he’s eating!

Well this morning, feeling very tired due to being woken up each and every night for very silly reasons, I reached my breaking point, There was cereal bar all over him, the floor, even a couple of cushions, (don’t ask) and all of this before I’d had chance to have my coffee! So feeling completely exhausted and fed up, I asked him this morning, whilst he was crumbing the remaining quarter of his cereal bar, “J, why can you eat it properly?”  …………  he responded with “my teeth are trying to eat it!”   AArrrgghhhhhhhhhhh!!!!!   I give up, how do I respond to that?

Does anyone else out there have similar issues with their ASD child?  If anyone has any advice I’m listening.  We have our first therapy session next week, I know we have alot of issues that need dealing with but the dirty thing is driving me insane…………  how can a child who hates dirt and mess so much be so messy????

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Drive Thru????

I recently wrote about how the green traffic lights and the green man flashing at the same time doesn’t make any sense to me. I’ve decided, after a little bit of thinking, (ouch! LOL), that one of the drive thru’s here also doesn’t make any sense to me.

The drive thru I’m talking about is the one at the Liquor shop! I don’t get it, you can’t drink and drive, it’s illegal, (rightly so!) and it’s dangerous……..so why on earth is there a drive thru for you to buy alcohol????

Surely this would encourage drink driving……..who knows. All I know is, it just doesn’t make sense to me!!

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