Posts tagged ‘special needs’

You’ve got a friend in me.

A special request this evening, from my Bronwyn, to write about the good stuff. She has a fair point. That I am broken-hearted, you know. That Baby Daddy is a complete bastard has also been covered and remains unchanged. There are still good things and good people however, and for them I am truly grateful.

While I was away, as I was for three weeks, my Father and Step Mother offered to look after Daughter Number Two for a weekend to give Baby Daddy a break. So, off she went to be spoiled in ways only doting grandparents can. Son Number One had been telling me how much he was missing his brother and sister, and as his respite house was only around the corner from my parents house I suggested he arrange to visit with Daughter Number Two while she was there. The next day I had a call from Son Number One. “Mum!” he said “We are all together!”. He had arranged for Son Number Two and his carers to also meet up at his grandparents, so the three of them could spend time together. My Son Number One, with all his issues – his ADHD, his Asperger’s, his epilepsy, his chromosomal abnormality – had arranged to get together with his two siblings, so they all could spend some time together. And then, as if that was not enough, he called me to let me know that they were all together. Perhaps it is only the parents of other special needs kids who will understand the enormity of this for me. Maybe all parents can appreciate the gift of knowing you have taught your child something valuable, something useful. My Son Number One, who lives in his one step removed from life bubble, reached out to his siblings and brought them together, and then included me in their reunion. I could not be more proud. I am proud of him, and I am proud of me, because whatever my failings my children understand family and they understand love, and that is down to me.

Son Number One’s carer had only nice things to say about him, when I met her today. Similarly, the carers who’ve had Son Number Two both this time and last, a different couple each time, are falling over themselves to care for him again if needs be. I spent two nights with Daughter Number Two before she headed off for an interstate holiday with Baby Daddy today. Both nights she slept soundly and peacefully, and left me with smiles this morning, secure in herself and in her relationships with both her parents. I think for so long I have been caught up in the day-to-day struggle for survival that I have not paid enough attention to the strengths that have been there, both in my children and within myself. There are good things here, as my Bronwyn pointed out, and I should take as much credit for them as I do for the rest.

While I was away I met with Ann O’Neill, director of Angelhands , an organisation offering support to those affected by violent crime. It was a very positive meeting for me on a number of levels. I was relaying to Ann what I saw as one of my failings; that I have taught my children how to survive and not to live. Her response was that some parents did not even give their children that. That I may not be doing as well as I feel I should be, but that teaching my children to survive was not teaching them nothing. I have watched my children over the last two days and have seen their resilience. They know they are important to each other. They know that they are loved. They know how to make the best of a situation. They don’t lie down and give up. Things may not be quite as they expected, or as they perhaps would like, but they get on with it. Perhaps some of this is in spite of me, but some of it has to be because of me and the things that I have taught them. My children’s resilience is a good thing. Their connectedness to each other, and to me, also a good thing. Meeting with Ann O’Neill, visiting the Angelhands office, hearing about the work they do – all very good things. All hopeful things that speak positively of the future.

My friend Bronwyn, a very good thing also. A definite kindred spirit. Everyone should have one. I am so lucky that I do.

Gray Skies are Gonna Clear Up.

It’s cold, and it’s wet. I love winter, much prefer it to summer, with the rationale that you can always get warm but it’s harder to cool down. Well, not this winter. This winter I just cannot seem to get warm and my hands, in particular, are like little ice blocks constantly. There is some fun to be had by sticking them down the backs of the kids t-shirts but even that’s lost its shine a bit.

The school holidays are drawing to a close and I am one of those ungrateful parents who is breathing a sigh of relief as I see the end in sight. I know I should be counting my blessings for each and every moment spent with my children but the reality is that I was exhausted at the beginning of these holidays and remain so. The boys had a paediatrician’s appointment yesterday, just a regular check up thing. Son Number One now stands at 201.5cms and weighs 96.5kgs. This wasn’t a surprise but it still is a bit of a shock to hear it in numbers.

So, imagine if you will this huge young man, who in some respects functions at about six-year-old level. Add an almost 13y.o. resentful, impatient, frustrated second young man. Then, for a bit of fun, mix in an extremely intelligent 4-year-old girl. After observing Son Number One and Daughter Number Two yesterday the good Doctor mused that they interacted as peers. This is mostly so. Son Number Two is all adolescent boy with little time for a preschool aged sister or an older brother he has eclipsed in most areas, except physical size. It is a volatile mix, and most of my time over the last couple of weeks has been spent trying unsuccessfully to keep the peace. The good Doctor noted that hypervigilance is exhausting. Quite. For all of us. Which is another reason why Baby Daddy choosing to spend so little time with Daughter Number Two in the holidays irritates me, because she does not even get the break of preschool at the moment and some quiet, one on one time with her Dad would have been really good for her. Son Number Two has been at a Vacation Care program with a friend for the last few days, so at least that has provided some breathing space for him.

The good Doctor was wholehearted bordering on enthusiastic in his support of my plans for the future. He will write a letter of support for Son Number One’s accomodation application. It is interesting to note that none of the people that we work with have had any difficulty understanding where I am coming from. I expect to some I will come off as a cold hearted and neglectful bitch, particularly having already had Daughter Number One die. On the contrary, it is because of that things are so clear to me. When you have had the very worst thing happen it throws everything into stark relief. Choices I am making now will not be the worst thing that could ever happen to my children, or to me. I’m not saying it will be easy, but things aren’t easy now and haven’t been for so very long. So, I will look ahead to the greater good for all of us. What other people think really can’t concern me. At the end of the day I will have to answer to my children and myself.

For Auld Lang Syne

I have been very neglectful of this blog of late. I really haven’t had the energy. I still don’t but like the rest of my life I am hanging on by the skin of my teeth in order not to lose it all. When we went for the big hospital check up months ago Son Number One was diagnosed with a chromosomal abnormality which has underpinned all the other problems he has had over the years.

As he gets older and his chronological age and ‘actual’ age seem to drift further apart, as he continues to get bigger and bigger and bigger, his behaviour gets harder and harder to manage and contain. At a paediatrician’s appointment last week I was told Son Number One had put on ten kilo’s and grown 6cm in six months. He is now 192cms tall and weighs  82 kg. I think that is just under 6 foot 3. He towers above me. He towers above most people. He is 15 years old and shows no sign of slowing down in growth anytime soon.

We’ve had some pretty bad behavioural incidents over the last couple of months, from a few weeks before Christmas to just last week and my resources are stretched to say the least. Son Number One was in emergency respite for three days last week, just so I could draw a breath and we are looking at longer term options and services with his paediatrician, but it’s been hard, both inside and outside my head.

The whole Holland v’s Italy thing comes to mind ( google ‘holland italy special needs’ ) but it’s not even that. I’m all for embracing the individuality of each of my children, I couldn’t care less if we end up in Holland, but gee, I really want him to have the right luggage to take with him. It has become increasingly apparent that as hard as I try I can’t force him to carry the bags I have lovingly packed for him. He just can’t pick them up.

Naturally super stress in one area of my precariously ‘balanced’ life has had flow on effects in other areas. Son Number Two is becoming increasingly frustrated by Son Number One’s behaviours and my inability to manage them. He has been acting out in an extremely unpleasant way. I took Son Number Two to the beach yesterday, while Daughter Number Two was with Baby Daddy and Son Number One was at Vacation Care. It was nice to just relax and play and it was very beautiful as a bonus! Everything was perfect, the view, the weather, and we had a lovely time together. Son Number Two’s best friend is coming for a sleep over tomorrow, and they will get to spend some time together while Son Number One is at Vacation Care. Then I will hold my breath for the rest of the visit in the hope nothing too crazy happens.

Surprisingly, for me anyway, we had a really good Christmas. It was very low-key and relaxed, which was exactly what I was going for. Baby Daddy was on his best behaviour and proclaimed it the best Christmas he had ever had, high praise indeed! The only thing that could have improved it  for me would have been having the Current Person of Interest present.

Which brings us to New Years Eve ! We flew to the city to see the fireworks. I had booked an apartment with views out over the Harbour and the city so that we had a perfect view  of all the fireworks but were far from the crowds and craziness. It worked really well, Son Number One can get quite agitated by the noise, which this time was dulled by distance. We watched the show from the comfort of our apartment and a great time was had by all. There are two fireworks displays on New Years Eve, one at 9pm and one at midnight. Daughter Number Two was allowed to stay up for the 9pm session, and went to sleep finally at 11.30. The boys were allowed to stay up until the midnight display. It was really fantastic and I’m sure it will not be the last time we do it. As a bonus the Current Person of Interest stayed with us, which was wonderful!

Everything with us is going smoothly, although he still lives far away and the long distance thing sucks. That is not likely to change though and for the moment the positives are still outweighing the negatives.

Juggle, juggle, juggle. The mother’s lament. School starts back next week, which will give me some breathing space and let me resume weekly visits with Nana. Hopefully the paediatrician will be in touch soon with some new directions for Son Number One and there is just over a month until the Current Person of Interest is here again. So, I’m just going to keep putting one foot in front of the other. This too will pass.

 

 

Snap back to reality…

We’ve been away for a few days, celebrating Son Number Two’s birthday in  style! The trip also served as a long goodbye to the Current Person of Interest as we were in his neck of the woods, and when all good things came to an end we both went our own ways home.

 

I live in a paradise, in a seaside town with all the services and shops you want, but that still has a small town vibe. It is a stunningly beautiful place with mild weather. It is a great place to bring up kids. However, at heart I am a city girl. I love the anonymity. I love the bustle. I love the sights and sounds and smells. I love looking out and imagining all the thousands and thousands of people going about their separate lives, but all interwoven and connected in their humanity. So, we were in the big city and I soaked it up and it soothed my soul.

 

We were lucky enough to connect with my beautiful sister Doctor Di (www.doctordi.wordpress.com) while in town, as well as Daughter Number One’s best friend who I love. These connections are also food for the soul and I am extremely grateful for them. A good time was had by all, and that’s not even counting the plane rides there and back!!

 

I knew that on my return home I would have to start getting serious about getting Son Number One back to school. The outcome of the meeting with his school was that they feel they can no longer meet his needs. They had suspended him rather than expel because at his age ( 15 years) he is legally able to leave school, and with an expulsion on his record there would be no obligation for any other school to take him and no responsiility for the Education Department to find him a place.  Today I have made contact with the local Special School and tomorrow we will be going to check it out. I have mixed feelings about this. On the one hand I am excited at the thought of getting him back to school and the programs and emphasis of this school sound ideal for Son Number One. On the other hand there is some grieving around the thought of him going to a special school, some adjusting of my perceptions and hopes and dreams. But I’m sure I will get over myself soon enough. There seem to be more positives than anything else, and in some ways there is some relief in knowing the constant struggle of swimming against the mainstream tide is over. It really can only be up from here.

 

Because it never rains but it pours, pours, pours in my life,  while I was in the City I had a phone call from the Aged Care Facility Nana had originally stayed at for respite. This was my dream choice of facilities for her. They had a place for her and would we like it? After a little hesitation about what this may involve and the impact on my already crushing schedule, plus a short consultation with Doctor Di, I decided yes, yes we did want it. Only I’m a plane ride away. No problem! You can have until 11am on the day after you fly home to get her here. Oh great! Thanks! No pressure then, excellent.

 

So, today I moved Nana. It took me half an hour to throw her entire worldly possessions into garbage bags and small carry bags, which all fit into the boot of my Father’s small hatchback and strip her small room bare. In the process I discovered Nana has developed an incontinence problem. Old age is so relentless and brutal. Then I literally whisked her away from her cup of coffee and into Dad’s car for the short trip to her new home. It was slightly mind blowing how much this didn’t phase Nana but hey I’m thankful for small mercies. The staff at St. A’s fell over themselves to welcome her back- they genuinely remembered Nana and seemed sincerely pleased to see her again. Remarkably the place seemed familiar to Nana and she even remembered some of the faces. For me St. A’s just seems to have more life about the place. Not so much like a waiting room for the Reaper. Nana seemed more engaged when she was there, doing more activities, given more attention. Those are the things I want for her. So, I hung her paintings and put out her photo’s and admired the little garden outside her room and made sure she got a replacement cup of coffee before hurrying off to get back to Daughter Number Two and Son Number One.

 

Before we check out the Special School tomorrow I will be going to visit Nana and see how she’s doing but I am confident this will be a good thing for her. As a bonus St. A’s is around the corner from the Special School and is much easier for me to get to for visits. Anyway, it has been a big start to the week, but we seem to be on the right track. I’ll keep you posted!

 

 

I’ve got to get out more….

So, last night I had another nightmare within a nightmare. No wonder I feel exhausted when I wake up! On the plus side last nights dreams weren’t quite as cryptic and I guess I feel that if I am working through any issues while I’m unconscious then theoretically it should save me time while I’m conscious, right?

I’ve got alot going on at the moment, both inside and outside my head.  You would think the stuff outside- including two beautiful boys with special needs, one enchanting almost two year old girl, a grandparent with alzheimers who I’m helping my sister  find a residential care placement for, a newish romantic entanglement of the long distance variety, an ex-husband I still care for…….where was I? I had to leave to change a delightful poo filled nappy. Oh, yes, I was thinking that the everyday glamour of my life would dull down the roar from inside my head. But it doesn’t.

I am an introspective person by nature. That has really only been magnified by depression and PTSD. I watch reality TV and read trashy magazines because they produce a soothing white noise effect in my head. A friend I was speaking with last night says the internet does the same for him, and I’d have to agree. That is partly what this blog is about, as the title suggests it is space for me to dump what is in my head.

I feel like I have entered a new phase in terms of personal growth and that is probably what the intensity of my dreams is about. This can only be a good thing, even if it is leaving me feeling a bit strung out.  Anyhow, the ‘real world’ calls…….later!

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