Ch ch ch ch Changes

Day six of the Autism Awareness Blogathon

Part Four. Part Thee is here, Part Two is here Part One is here

Isn’t the brain an amazing thing? We take it for granted a lot of the time, but it’s always there processing away. My boy’s brain was going it’s own way in a few different areas. Processing was slow but there was always progress and so long as there is progress, you know you are heading in the right direction.

There were a lot of changes in this year. Baby E went to her new family. What a wonderful experience that was to be able to introduce a bubba to their new mum & dad. So wonderful, I signed up for another little pre-adoptive bub – Baby R, a boy.

Now I know that change can be a massive issue for some kids on the spectrum. For some reason, this is not the case for L. At this time, he was very accepting of all these little babies and mostly just got on with his own thing. Anyway, he wasn’t officially on the spectrum yet.

We’d had our official diagnosis of cortical vision impairment (CVI). It turned out that there was a link between L’s vision issues and the meds his birth mum had been using during pregnancy. The main ways in which L was affected were that he had very little peripheral vision (interesting, given that this is often an autistic preference rather than direct eye to eye contact). He finds it difficult to understand changes in texture, especially on the floor and his depth of field is fairly poor also. This means that he finds it hard to judge something like steps – a big step or a little step, a step up or a step down. He has found it very difficult to understand representational images (ie PECS). For a long time he would prefer to flick the pages of a board book rather than look at the images. Visually motivated? No.

L was also prescribed glasses. So we slowly started getting him to wear them and he adapted to them over a couple of months. He’s pretty rough on them too, so his glasses only usually last about 6 months or so, if I’m lucky.

I’ve certainly had my share of massive meltdowns, but at this point L was relatively easy to manage. I’d wanted to keep everything very consistent and predictable for him, but with so many of the people who I love living in other parts of the country, the time eventually came where we were headed off into unknown territory – a holiday.

We travelled by air and I had every possible special, extra fun and entertaining activity ready for the flights. I had a supply of junk mail for him to thumb through (a new interest) and various stringed toys of course. He was pretty good all round. He was certainly no more trouble than any kid on a plane. What I hadn’t expected was the burst of development in so many areas that followed this trip. His language jumped up a notch, he added new play routines to the repertoire and he really enjoyed meeting all these new people, spending time with cousins, family and friends and walking, walking, walking! He won a lot of fans on that trip.

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After we got home I made up a little photo album for him of the trip and all the people that he’d met and the places we’d been. He still loves to look through that album though it’s a little worse for wear these days.

The evaluation process for autism took quite a while. It involved a number of visits to the specialist developmental clinic at the main children’s hospital. They also asked for reports from any professionals who knew him. He had started with an OT & physio program and they were able to provide a detailed update on where he was at functionally. Of course the Narby professionals were also able to contribute a lot of information as they had seen him now for over 2 years.

Before we knew it another year had passed and he was three years old. An appointment was set for April and this was when the diagnosis would be decided.

All along as I’ve said, I wasn’t worried about what that decision would be. This is not because I didn’t care, but because a label would not change anything for me. Also, I knew that he’d been given every possible early intervention from a very young age, so I knew that whichever way the cards would fall on that day in April, I was ready for it.

I’m ending this story here for now. You will find out why when we get to day 26.

A note about photos: of course I have a million photos, I’ve tried to choose ones that show him without breaking any confidentiality

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The Wednesday Girls

Day Five: Autism Awareness Month blogathon

Part Three of my autism mum story. See part one here and part two here

The Wednesday Girls were a group of new mums that I fell in with when L was a few months old. We got together every Wednesday at one of our houses or would go on an outing – swimming, playgrounds, bus rides. The kids had all kinds of fun and we would get to download, debrief, laugh, cry and work our way into some really solid friendships, sealed with the fire of a shared journey.

There were times when I felt like these women were saving me from drowning. None of us were perfect mothers by any stretch, not that there is such a beast. Some had been through fertility issues, others had horrible gestational conditions but here we were with these beautiful children. And over the years, the number of kids has grown quite considerably.

L was the oldest of this crop but only by a few weeks. So when the other kids would reach a milestone before him I was aware but not overly concerned as I know that every child has their own schedule to follow. The regular professional support I got through the Narby playgroup was reassuring. The therapists who see so many children come through the school, advised patience. It was going to take a little longer for my boy.

I do remember seeing one of the boys quickly moving through the crawling, pulling himself up to stand and then walking stages. I said to his mum Abby – your boy is amazing! He is so advanced! I can laugh now as I think back to this comment. Because of course, he was just totally normal, doing what most kids do within a month or two of each other.

Gradually, all the kids in the Wednesday Girls playgroup overtook my little darling. He wore the knees out of a lot of pants crawling for a full 12 months. I eventually had to get him some knee pads as he ended up with big callouses on his poor little knees. Still he was a happy, laughing boy with an engaging personality. Because of that the Wednesday Girls kids have become a wonderful neurotypical friendship group for L.

Wednesday Girls kids

It was around this time that his obsession with string began. He would gravitate towards anything with a string, anything that looked like or resembled a string. He had a particular way that he liked to fold the string and would do this over and over. My sister in law had given him a beautiful toy that was a block of wood, painted yellow and shaped like a wedge of swiss cheese. Attached to the cheese by a string was a little mouse. You could thread the mouse through the holes in the cheese. Not my boy! He got very attached to it and wanted that stringy mouse in his hand all the time. So as he would crawl along, the wooden cheese would swing through the air and thump down beside his hand. That was the start of me modifying toys for him. Of course I detached the string from the cheese. Oh happy day! That little mouse went everywhere in that pudgy little hand of his. Sometimes, being an extremely oral boy, he would pop that little mouse into his mouth to the shock and horror of some, who thought it may have been an actual mouse.

I had gone back to part time work as an arts bureaucrat. As L got a little older and it became obvious that I needed to give him as much as I could during these early years. I was juggling the work commitments, where the demands on the limited time I was in the office became increasingly overwhelming and a little boy who needed everything I could give him. Priorities!

I arranged to have a year of leave without pay.I knew that it would make a big difference to both of us. So it was with enormous relief that I was able to stay at home and start ramping up on L’s development.

I’ve said in other posts that I am the kind of person who likes to push the envelope a bit. I’m never shy to get in there when something needs doing. So, true to form I put my hand up to care for another child during this time.

Just before L was about to turn one, I had provided some respite care for a little baby girl who was waiting for all the red tape of the adoption process to be finalised. It was only for a few weeks, but I just loved doing this. So the week after I finished work, as I sat there twiddling my thumbs (!!) I took a call asking if I would be willing to care for a ‘pre-adoptive’ baby. She’d only just been born. She was a few weeks premature and was up in the hospital waiting for her placement with a foster carer while the adoption team did their thing.

I guess you know by now how I responded to this request. I was up at the hospital lickety split. It took about another 10 days before she was able to come home, but I was up there every day, giving her lots of love, feeding her, bathing her and giving Baby E as much as I could.

Some people questioned me taking on another child when L had a lot of special needs. Being one of five children myself, I felt that the benefits of having siblings far outweighed any possible negatives. I still think that I made the right call there. It’s why I have three kids in my care right now. But back to the topic…

At this point L was almost two. We had a wonderful Christmas that year in our steamy sub-tropic city. Lots of water play and backyard fun, visitors and family.

Assuming the position, post Christmas lunch
my sister and baby E

The new year started off great. L was finally walking and he was on a mission to make up for lost walking time. We walked every day. He refused to go in the pram. He just needed to walk, so we did. Sometimes he’d walk up to 3 kilometres before finally slowing down and stopping. We’d walk right past the playground – not interested. At all. Didn’t want to stop and look at the ducks or the water or the trees or the cars or the flowers or the dogs. He just wanted to walk.

At the Narby playgroup, they were able to access what they called ‘visiting teachers’ who have specialised skills in various areas. They organised for the teacher who specialised in autism to come in and meet L and myself. He wasn’t convinced that L was autistic as he was quite a social boy, especially with adults. But despite this, he was a great support though that year when a few more behaviours emerged and we started down that well trodden path of behaviour management.

I remember saying to one of the therapists in the middle of that year that I was pretty sure that he was on the spectrum. At that point, I had done quite a bit of research and I knew what the indicators were and the criteria was a pretty good match for my boy. Now that he was two & a half plus, the evaluation process could begin and the evidence gathering and doctors appointments became an even bigger part of our routine.

It may sound blasé now, but I didn’t care if he would be diagnosed as autistic or not. I knew that a diagnosis would not change him. He was still my little darling no matter what. I figured that if he did get the diagnosis, then great – we know what we are dealing with and can get on with it. If not, then also great – he’s not autistic, fantastic.

It would take almost a year before a diagnosis would be made.

Letter to a beautiful girl

To my darling little A,

As I am writing this – you are 9 months old. You are a beautiful little girl who is laughing, crawling, babbling, exploring, pointing and loving life. In a few days you will be meeting your new family and your whole world is going to change. Right now they don’t even know who you are, but I know that your Mum & Dad will learn to love you just as much as I do. I know just how lucky they are to be able to have you as their little girl and to see you grow into an amazing young woman.

But right now, I am the one person who knows you the best. I know all the little things that make you happy, how to hold you to calm you down when you are upset and where all your ticklish spots are. Here’s a few of the things I know about you now that I think will always be a part of you:

You have a big personality – you know what you want and you won’t stop till you get it. You have a quick temper, but when you feel safe and loved, you are the most sweet, charming and delightful little person. You are very passionate and very intelligent – I know that nothing will stop you from achieving any goal you set for yourself. The people who love you will need to be very patient because it takes you a long time to feel safe and secure, but once you do, your love is an incredible reward.

You are such a special little girl to me and I love you very much. You will always hold a special place in my heart. I hope that one day I will open the door and find you there. If you have any questions about the first 9 months of you life, I hope I can answer them for you. It’s been a privilege to be the first person to really know you, and to love you because of who you are. I wish you the absolute best in life – I’m so proud to have been a part of it.

Lots of love

How do you say goodbye #2

Most of the children who come into my home are babies or at least under the age of 5. I have cared for older children, but somehow over the past few years it’s the little ones who keep coming through my front door.

Sometimes these little darlings go back to their birth families, some go to their new families when they are adopted and some stick around. As I write this I have one playing at my feet and one being burped on my lap while we wait for the third to come home from his family visit. I am perfecting the art of one handed typing.

Saying goodbye is such a personal process. In the weeks, days or hours before one of my kids moves on, I start my goodbye by writing them a letter. In this letter I try to tell them a bit about the time they have spent with me, some of their experiences and milestones. I like to tell them a little about their personality traits and my hopes for their future. Mostly I want them to know how loved and cherished they were.

If they were newborn when they came to me, then I like to tell them some of the details of when they were still in hospital and when they came home. Of course they will have either a lifebook or journal that goes with them, but these letters are something very personal from me to them. I hope I can help them to fill in a little but important piece of a big jigsaw.

For some children who are being adopted, they won’t get to read this letter until they are 18 years of age and able to request their file. I try to imagine how it might be for them to get this little window into their very early lives. I know that I am the only one who can tell them about this time in their lives, so I try to honour that precious role.

On their last morning with me I always take a photo of us together. The protocol for children being adopted is that the foster carer is not in any photos that go with the child. So this photo is for me and for them but they won’t get to see it until they can access their file.

I am usually able to hold onto my emotions right up until the point where they are heading off for the last time. If I can, I like to carry them out to the car, strap them into their seat, tell them I love them and give them a final kiss goodbye. After that, I’m a mess and the best thing that can happen is for the parents or workers to drive off into the sunset and leave me to shed some tears for that little piece of humanity who needed me for a little while.

If I can, I’ll take myself off to a sad movie and sit there in the dark shedding a quiet tear. It’s remarkably therapeutic. After all the build up and the final farewell it’s great to have a moment to myself with a wonderful distraction (I never get to see films these days!!).

Life goes on and I try to get on and do things I can’t normally do when I have a bubba in tow – there’s always plenty of jobs to do around my house & garden. It gives me the change and purpose I need and before I know it, the phone is ringing and someone else is on their way to me.

Adios mi Querido

Dear R

If you are reading this – you must now be at least 18 years old. Your first 7 months doesn’t sound like much time compared with all those years you have now lived – but at one time, it was your entire life – and this was the life you had while you lived with me. I was your foster carer from birth until you were adopted.

When I went to pick you up from the hospital, you were just 4 days old. I knew nothing about you except your name and that you were a boy. It was the Thursday before Easter. When I arrived at the hospital, your birth mum was still with you, giving you a feed and helping you to settle down for a sleep before she said goodbye.

You were a beautiful baby. I used to call you my ‘golden child’. I had a strong feeling that you would have a charmed life – that things would work out for you in a really good way. I hope that has been true so far – and that you have had a happy childhood, that you feel loved and that your birth mum gave your mum and dad a most precious gift.

We had a wonderful time together. While you were with me, you went through a lot of your early milestones: learning to smile and then laugh, learning to sit, learning to eat (something you loved to do!) and cutting your first teeth. But I guess the most important thing you learned was about love. You thrived on love and gave it right back to me (x millions!!).

I’ve included a few photos of us from that time. You had an older foster brother who was 2 years older than you and a younger foster brother who was two months younger that you . It was pretty busy with three kids. You all looked so different, people used to give me funny looks and sometimes would say things like ‘oohh how did you do that???’ I’d smile and tell them ‘magic!’

Saying goodbye to you was hard. Although I was happy for you and your parents, I was sad to think I may never see you again. I hoped that the transition from the only world you knew wouldn’t be too hard for you. I knew you would be OK, but I really missed you – and still do. I have a photo of you on my wall and so I often think of you, wondering how you are going and imagining what an amazing man you are becoming.

My door is always open to you and I would love to hear from you – anytime. I’ll be happy to share whatever memories I have from that time in your life and to answer any questions you might have. To meet you again and to see who you have become would be very, very special to me.

Take care and never forget that there are people in the world who love you very much and that you will always have a place in my heart – forever.

Lots of love,