It's been one of the most challenging years of my life personally- my first as a single parent. I don't share much here about this, and I still won't, suffice to say there have been some real lows, many moments of doubt, and a lot of soul searching. I like to think that most of the time I've handled myself with grace and with dignity, and I'm quite proud that the boys' dad and I have managed to stay friends and co-parent in a way that puts our boys first. My faith has been strengthened greatly in the last twelve months as I've had no choice but to lean on my God with everything, and He has carried me through every low and brought me every high. Those highs have generally revolved around my children, who truly are the greatest blessing in my life.
I really didn't want to write a long, deep and meaningful post about our year. I think we're all a bit "overloaded" at this end of the year, so I'm going to try and put some of our year into a list- only using the alphabet in honour of my Bubbly One, because YouTube Alphabet Phonics have been the soundtrack for a lot of this year. You can find links to other posts I've written via the highlighted and underlined words throughout the post.
So without further ado, The Autism Bubble ABC's of 2014:
A is for anxiety
I have it, I finally acknowledged it, and I'm learning to manage it. I'm very thankful to the excellent psychologist who looked right through my "fine" exterior and helped me to understand that it wasn't "just stress" and was in fact, really unhealthy.
B is for Bus Driver
My pre-coffee sparring partner. He critiqued my overgrown lawn, my hairstyle and my pyjamas. I told him he had no filter and explained that it's "the thing that catches all the inappropriate crap you think before it comes out of your mouth". He took that well and behaved for a few days, and he really tried to take on board (see what I did there?) the things I explained about Bubbly's sensory issues and about how my boy experiences the world. He drove me mad, but he also drove Bubbly safely and reliably to and from school, and saved me a lot of time so I could devote more of it to the Little One. "Hail to the bus driver" indeed!
My pre-coffee sparring partner. He critiqued my overgrown lawn, my hairstyle and my pyjamas. I told him he had no filter and explained that it's "the thing that catches all the inappropriate crap you think before it comes out of your mouth". He took that well and behaved for a few days, and he really tried to take on board (see what I did there?) the things I explained about Bubbly's sensory issues and about how my boy experiences the world. He drove me mad, but he also drove Bubbly safely and reliably to and from school, and saved me a lot of time so I could devote more of it to the Little One. "Hail to the bus driver" indeed!
C is for communication
So much came together for Bubbly with his communication this year. He is still mostly non-verbal, but his receptive language has come so far this year. With a combination of maturity, incredible teaching, and a very well suited ADHD medication (Strattera) has come a huge increase in his ability to concentrate. He is taking in the things he needs to learn, and his anxiety has also eased because he's not so overwhelmed by his brain and body wanting to do a million things at once. In turn, because he has more control over what's going in, he's suddenly coming out with all of this awesome stuff, and his school have done an amazing job of providing the AAC supports and teaching that he needs at every moment. Visuals no longer make him run away or melt down with anxiety, he can navigate through TouchChat better than I can, he's responding to and using some signs, and we're also hearing lots of part-words- sometimes spontaneous, sometimes with prompting, but always in context. He has come so far this year that he received the Communication Award for his entire school for 2014. Bubbly's dad and I were fit to burst we were so proud of him, and so were his teaching staff.
So much came together for Bubbly with his communication this year. He is still mostly non-verbal, but his receptive language has come so far this year. With a combination of maturity, incredible teaching, and a very well suited ADHD medication (Strattera) has come a huge increase in his ability to concentrate. He is taking in the things he needs to learn, and his anxiety has also eased because he's not so overwhelmed by his brain and body wanting to do a million things at once. In turn, because he has more control over what's going in, he's suddenly coming out with all of this awesome stuff, and his school have done an amazing job of providing the AAC supports and teaching that he needs at every moment. Visuals no longer make him run away or melt down with anxiety, he can navigate through TouchChat better than I can, he's responding to and using some signs, and we're also hearing lots of part-words- sometimes spontaneous, sometimes with prompting, but always in context. He has come so far this year that he received the Communication Award for his entire school for 2014. Bubbly's dad and I were fit to burst we were so proud of him, and so were his teaching staff.
D is for Diagnosis
At the beginning of the year I raised some concerns I had with The Little One's paediatrician. He wasn't pointing, he had no purposeful language, he didn't respond to his name, he was greatly distressed by certain textures, he wouldn't tolerate anything in his mouth except for a bottle and feeding him solids was a battle. He was fascinated by the fans or wheels spinning. He was behind with his gross motor development, he had low muscle tone. It was all too familiar even though there were differences to Bubbly. He was 13 months old and the paediatrician said that while he agreed with me that there were developmental delays and emerging autistic traits it was too early for a diagnosis and to bring him back at 18 months. We began early intervention through Bubbly's old provider at 16 months and they agreed with me. A couple more visits and finally, at 20 months The Little One turned in a fine performance of what I'd been describing, and we walked out with a diagnosis. Two from two, and that's okay..
At the beginning of the year I raised some concerns I had with The Little One's paediatrician. He wasn't pointing, he had no purposeful language, he didn't respond to his name, he was greatly distressed by certain textures, he wouldn't tolerate anything in his mouth except for a bottle and feeding him solids was a battle. He was fascinated by the fans or wheels spinning. He was behind with his gross motor development, he had low muscle tone. It was all too familiar even though there were differences to Bubbly. He was 13 months old and the paediatrician said that while he agreed with me that there were developmental delays and emerging autistic traits it was too early for a diagnosis and to bring him back at 18 months. We began early intervention through Bubbly's old provider at 16 months and they agreed with me. A couple more visits and finally, at 20 months The Little One turned in a fine performance of what I'd been describing, and we walked out with a diagnosis. Two from two, and that's okay..
E is for Early Intervention
There are a lot of things I've said I would do differently if I had my time over with Bubbly, and I'm kind of getting the opportunity with The Little One. Someone said to me when Bubbly was in Early Intervention, that the services he was receiving should be teaching me just as much as they were teaching him, and that's been really clear to me again as I travel these early days with my Little One. It's still hard, but I'm in a very different head space to where I was with Bubbly at this age. We've returned "home' to the early intervention service at Bubbly's old preschool where we attend a special needs playgroup run by two amazing women, and I see my Little One progress every week under their guidance and support of both of us. I can't do these women justice, but I tried a little in this post about doing this the second time around.
F is for ...
that word I've said way too many times this year, usually under my breath, and preceded by the words "What the...". I need a swear jar, except that would require money I don't have!
that word I've said way too many times this year, usually under my breath, and preceded by the words "What the...". I need a swear jar, except that would require money I don't have!
G Is for Gratitude
For Bubbly's teachers, his aide, his amazing school, his respite worker and his OT.
For The Little One's Early Intervention Coordinator, his aide, his physiotherapist, and another shout out to the most talented OT on the planet. These amazing women give of themselves week in and week out, they champion my kids and they support me more than they will ever understand. I wrote about a few of them, and some from days gone by in my Champions post.
H is for Haircut!!
Bubbly grew a LOT this year, and my ability to hold him still for the torture that was a haircut was pretty much gone. In desperation I asked in a group I'm in if anyone had a YouTube video of a scissors-only home haircut. My awesome friend at Suburban Mamma and her gorgeous children MADE us one! He watched it without running away. There were a few other factors I clued in with over the following couple of days- one of which was that if I called it a "chop" he didn't think it would hurt like a cut, and to make a long story short (you can read it here), Bubbly ended up giving me the scissors and allowing me to give him his first ever tear and trauma free haircut. There have been a couple more since then. It was nothing short of miraculous, and gives me hope for the day when I have to shave him when he's older!
I is for iPad
I love what it has brought to Bubbly's life, for the opportunities it's presented for his learning and communication, and I curse it's pathetic battery life (and that ridiculously short charging cable) on a daily basis. It goes everywhere with Bubbly. I fume, get offended and feel guilty every time I read another article talking about how electronics overuse is detrimental to our kids', and then I think about the things it makes possible for my child that others take for granted- the ability to communicate, to interact, to learn, and even to feel safe and secure, and I look at my kid that never stops moving, and I get over it. Like most things, the usual rules just don't fit in our house.
Bubbly grew a LOT this year, and my ability to hold him still for the torture that was a haircut was pretty much gone. In desperation I asked in a group I'm in if anyone had a YouTube video of a scissors-only home haircut. My awesome friend at Suburban Mamma and her gorgeous children MADE us one! He watched it without running away. There were a few other factors I clued in with over the following couple of days- one of which was that if I called it a "chop" he didn't think it would hurt like a cut, and to make a long story short (you can read it here), Bubbly ended up giving me the scissors and allowing me to give him his first ever tear and trauma free haircut. There have been a couple more since then. It was nothing short of miraculous, and gives me hope for the day when I have to shave him when he's older!
I is for iPad
I love what it has brought to Bubbly's life, for the opportunities it's presented for his learning and communication, and I curse it's pathetic battery life (and that ridiculously short charging cable) on a daily basis. It goes everywhere with Bubbly. I fume, get offended and feel guilty every time I read another article talking about how electronics overuse is detrimental to our kids', and then I think about the things it makes possible for my child that others take for granted- the ability to communicate, to interact, to learn, and even to feel safe and secure, and I look at my kid that never stops moving, and I get over it. Like most things, the usual rules just don't fit in our house.
J is for Jesus
I love Him, Bubbly loves Him, and for the first time in six years my boy has chosen to come to church and has not only tolerated, but enjoyed KidsChurch with my support. This kid plays Christian music on his iPad and worships loud and proud, and I envy his absolute lack of care of what others think of that. Props to his respite worker, OT and bus staff for just respecting that about him too.
My church is an amazing support for me, and with Bubbly coming along, and The Little One being in creche, a whole new level of autism awareness has been raised in my church also. Bubbly is the most high support of any of the kids with special needs we've had through our church, and as of next year there will be a Special Needs kids ministry beginning, including supports in KidsChurch, a special needs-specific class for those who struggle to cope with the existing groups, and measures across the entire church to make it more accessible and supportive of special needs families. I am also very excited to be starting a social/support group for special needs mums and carers, something that has been on my heart for a few years now, and for which the support and enthusiasm from the church leadership has been amazing. It seems that Social Work degree may get some use after all!
I love Him, Bubbly loves Him, and for the first time in six years my boy has chosen to come to church and has not only tolerated, but enjoyed KidsChurch with my support. This kid plays Christian music on his iPad and worships loud and proud, and I envy his absolute lack of care of what others think of that. Props to his respite worker, OT and bus staff for just respecting that about him too.
My church is an amazing support for me, and with Bubbly coming along, and The Little One being in creche, a whole new level of autism awareness has been raised in my church also. Bubbly is the most high support of any of the kids with special needs we've had through our church, and as of next year there will be a Special Needs kids ministry beginning, including supports in KidsChurch, a special needs-specific class for those who struggle to cope with the existing groups, and measures across the entire church to make it more accessible and supportive of special needs families. I am also very excited to be starting a social/support group for special needs mums and carers, something that has been on my heart for a few years now, and for which the support and enthusiasm from the church leadership has been amazing. It seems that Social Work degree may get some use after all!
K is for Kisses
Bubbly's weapon of choice. Don't want to do something? Give the person a big sloppy kiss. It'll distract them surely! Want Mum to get out of your room and leave you alone? Give her a smooch and then shut the door in her face. Want something you're not sure they'll give you? cradle their face with your hands, give them some super special eye contact, a peck on the lips, and it will be your's. It's seriously cute or it wouldn't work so well!
Bubbly's weapon of choice. Don't want to do something? Give the person a big sloppy kiss. It'll distract them surely! Want Mum to get out of your room and leave you alone? Give her a smooch and then shut the door in her face. Want something you're not sure they'll give you? cradle their face with your hands, give them some super special eye contact, a peck on the lips, and it will be your's. It's seriously cute or it wouldn't work so well!
L is for learning
Them, me, it never ends, and if we're doing this right, it never will.
For Part Two, click on this link: http://theautismbubble.blogspot.com.au/2015/01/abcs-of-2014-part-two.html?m=1
Them, me, it never ends, and if we're doing this right, it never will.
For Part Two, click on this link: http://theautismbubble.blogspot.com.au/2015/01/abcs-of-2014-part-two.html?m=1
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