I am not writing in historical order but just as memories come to me. This one came today.
So, things I have learned as a mother of an autistic son:
No. 3 - exposure builds resilience.
This is around Aidan's sensitivity issues. It is really common for people on the autistic spectrum (I think of this as a particularly colourful rainbow) to have sensory sensitivities.
For example noises can actually hurt in their head, or get lost in the air on route. For some it is touch. Even the seams on trousers, tops and socks can prove to be too painful.
Aidan has both sound and touch issues and is hyper to both, as well as smell.
I think we had just received his diagnosis the first time we took him for a haircut. He has really thick hair and was doing a good impression of the 1970's Hulk. He would have been nearly three.
We have a wonderful local barber, my husband and oldest son love to go. Really manly place. He also employs a disabled person to support his team of barbers, so I do know we are very lucky.
Anyway, my husband and oldest son had their cuts as usual, and the son receives his lollipop. I arrive just as they finish, and show Aidan, who is totally locked in his own head at this point, wigged out by the noise and trying to hide behind the coat rack and play with the water, where he will go to get his hair cut.
We get him in the chair. So far so good. He likes the chair and the mirror. Then the clippers start. And he melts down spectacularly, real anguish and inconsolable. But it is too late, the first cut is done and there is no turning back.
So I adopt a kind of headlock with enough space for the barber to do his thing and try to reassure him, and the petrified people waiting to have their haircut. Husband comes for support and we successfully pin him. By 5 minutes in he is red, tears streaming down his cheeks and a ball of snot.
Someone, it may even have been me but I like to think not in my head, had the bright idea of giving him a lolly to distract him. Which worked. For exactly 10 seconds until he took it out his mouth and a large chunk of cut hair landed on it. Then he was really upset and got more snotty, forming a comedy beard of his cut hair, lolly juice and snot. Baby wipes were just out of reach and I knew if I let go at that point then the boy was going home with a mohican. So beardy boy screamed, we made shushing noises, and Mem kept on cutting.
Finally, after what felt like hours but was more like 20 minutes, we got the job done, the beard removed, changed his t-shirt for one not so hairy, snotty and sticky; and got him a lollipop that didn't look like Donald Trump. Silence. Apart from me being super over the top in my praising of him for surviving. Everyone in the place physically relaxed. We even had a little laugh at the comedy beard and how it took 3 of us to cut one little boys hair.
And then I turn to look for him to shower him with more praise. And he has manged to get behind the coat rack where he wanted to be earlier, and is in the shop window. Naked. Apart from the not hairy lollipop. And his blue wellies.
It was all just too much and the overload on his senses meant any contact with his skin was not acceptable. So naked he got. Except for the wellies as he doesn't like the feel of bare feet on the floor. It took the same 3 of us to corner him and get him out that busy main street window, and I finally got some clothes back on him by turning everything inside out so he was seam free for his trip home.
I am very happy to say we kept going back, Mem kept cutting his hair, we kept doing the headlock, and it got easier each time. And he kept his clothes on. The streaking is cute at 3 but a police matter at 16. So sometimes you have to accept that exposure will build resilience and just keep going.
16. My lovely boy is 16 this week. And can cope with touch, a hug, if not too long, and me holding his arm while we walk. He fixes his hair and even has a style. He still twitches when they cut it but he copes. He still hates the smell of cigarettes and does a very loud fake cough if it blows on him while out. And he still feels pain when people sing - he can listen to music but not anyone singing live easily. Even with noise reducing headphones he struggles. But he loves to sing. With his clothes on and the seams the right way.
So lesson No. 3 as the mother of an autistic son. Sometimes things we do can seem impossible, unbearable, and thoroughly miserable. But keeping going, and keeping trying, brings a way of coping, moving on, and a resilience that can be applied to many things in life.
Wednesday, 20 January 2016
Thursday, 14 January 2016
Things I have learned No. 2 - Your gut is usually on to something
Here we go with things I have learned as the mother of an autistic son (TIHLAAMOAAS for short (!?)) - No. 2 - Your gut is normally on to something or my other title - don't be put off by a tired doctor who says you read too much.
It started with little things, not turning to greet me when I came in the room, lack of speech or playing together, not copying with my infamous wind the bobbin act (goes down a storm normally honest); a seeming disconnection. And obviously the bonkers bits like the eating of the cat biscuits, drinking out the loo and weeing on exactly the same patch of carpet even though the toilet and potty were just a step or two away.
I am a healthcare professional, and I learned my professional knowledge from text books and experts. So I pretty much applied this to child rearing and read development and psychology books from around 12 weeks pregnant with the first. So I knew he was doing good and hitting milestones at roughly the right time. And it made it more obvious that Aidan, my second child, wasn't. Eventually, after a failed hearing test at our clinic visit around age 18 months, we had a visit with the pediatric doctor.
I had written down some things that concerned me, my brain was still mush as I still wasn't hitting a 4 hour sleeping cycle, and so I popped this little note out and mentioned the lack of interaction, the lack of eye contact and the fact he wasn't speaking as of yet. I mentioned that it was the hearing test that had flagged this up. I also said I was aware of the development milestones and noticed a lot of differences from my oldest son.
Well that day Aidan pulled out the stops. Played with the toys correctly, smiled at the doctor, and basically looked like a pretty normal 18 month year old. So he decided not to persue this and said we would review at the two and a half year review by the health visitor - a whole year later. It was the written comment "Mother is aware of autism and does extra reading." that knocked me for 6. I write notes about patients for a living and I know exactly what that veiled comment meant.
And it made me question my own gut instinct. Maybe I am just a neurotic mum who is so obsessed with being good that I am seeing things that aren't there. Maybe there are loads of kids that snack on Iams.....
Most of the family and friends said he was fine, nothing wrong with him, you are just a busy working mum and he is a second child. Way too much guilt.
So I left it until the two and a half year review, just like the doctor suggested. By then it was glaringly obvious something was wrong, barely any babble, no pointing, no eye contact, isolated play and we were referred for a hearing test again! Really!!! That boy could hear Teletubbies (google it young uns) at 500 paces and be in front of the TV in a flash. Nursery though he was a naughty boy because he wouldn't listen and he bit one of the teachers. Again I was left wondering what kind of awful parent I had become.
So at age 2 and 8 months we went for the hearing test. I still didn't want to come across as the anxious over the top mum, so went with an open mind to the specialist at the Phoenix center. Within minutes of getting in the room it was obvious the testing would be a challenge. Aidan was very isolated in his play and obsessed with taps and water - at home he regularly flooded the bathroom and his little hands would be freezing from the cold tap - we had to shut the hot one of for safety. It was easier to pop him in the bath or take him swimming and I did that as much as I could.
He headed straight for the taps, behind a screen, and ignored the doctor. When the doctor showed me the test, I explained there was very little chance of Aidan understanding what was being asked of him. That lovely Doctor - Dr Saffaf, sat me down and quietly asked me if I had heard of something called autism.
I cannot tell you the relief I felt that finally someone didn't think I was nuts. I think I even cried a little, but not out of sadness, out of relief. Finally someone else saw what I saw. And that started the journey of diagnosis which is a story for another day.
And so - things I have learned as a mother of an autistic son - No.2 - Trust your gut, it is rarely wrong.
It started with little things, not turning to greet me when I came in the room, lack of speech or playing together, not copying with my infamous wind the bobbin act (goes down a storm normally honest); a seeming disconnection. And obviously the bonkers bits like the eating of the cat biscuits, drinking out the loo and weeing on exactly the same patch of carpet even though the toilet and potty were just a step or two away.
I am a healthcare professional, and I learned my professional knowledge from text books and experts. So I pretty much applied this to child rearing and read development and psychology books from around 12 weeks pregnant with the first. So I knew he was doing good and hitting milestones at roughly the right time. And it made it more obvious that Aidan, my second child, wasn't. Eventually, after a failed hearing test at our clinic visit around age 18 months, we had a visit with the pediatric doctor.
I had written down some things that concerned me, my brain was still mush as I still wasn't hitting a 4 hour sleeping cycle, and so I popped this little note out and mentioned the lack of interaction, the lack of eye contact and the fact he wasn't speaking as of yet. I mentioned that it was the hearing test that had flagged this up. I also said I was aware of the development milestones and noticed a lot of differences from my oldest son.
Well that day Aidan pulled out the stops. Played with the toys correctly, smiled at the doctor, and basically looked like a pretty normal 18 month year old. So he decided not to persue this and said we would review at the two and a half year review by the health visitor - a whole year later. It was the written comment "Mother is aware of autism and does extra reading." that knocked me for 6. I write notes about patients for a living and I know exactly what that veiled comment meant.
And it made me question my own gut instinct. Maybe I am just a neurotic mum who is so obsessed with being good that I am seeing things that aren't there. Maybe there are loads of kids that snack on Iams.....
Most of the family and friends said he was fine, nothing wrong with him, you are just a busy working mum and he is a second child. Way too much guilt.
So I left it until the two and a half year review, just like the doctor suggested. By then it was glaringly obvious something was wrong, barely any babble, no pointing, no eye contact, isolated play and we were referred for a hearing test again! Really!!! That boy could hear Teletubbies (google it young uns) at 500 paces and be in front of the TV in a flash. Nursery though he was a naughty boy because he wouldn't listen and he bit one of the teachers. Again I was left wondering what kind of awful parent I had become.
So at age 2 and 8 months we went for the hearing test. I still didn't want to come across as the anxious over the top mum, so went with an open mind to the specialist at the Phoenix center. Within minutes of getting in the room it was obvious the testing would be a challenge. Aidan was very isolated in his play and obsessed with taps and water - at home he regularly flooded the bathroom and his little hands would be freezing from the cold tap - we had to shut the hot one of for safety. It was easier to pop him in the bath or take him swimming and I did that as much as I could.
He headed straight for the taps, behind a screen, and ignored the doctor. When the doctor showed me the test, I explained there was very little chance of Aidan understanding what was being asked of him. That lovely Doctor - Dr Saffaf, sat me down and quietly asked me if I had heard of something called autism.
I cannot tell you the relief I felt that finally someone didn't think I was nuts. I think I even cried a little, but not out of sadness, out of relief. Finally someone else saw what I saw. And that started the journey of diagnosis which is a story for another day.
And so - things I have learned as a mother of an autistic son - No.2 - Trust your gut, it is rarely wrong.
Friday, 8 January 2016
The best way to start is to just start.
I have promised myself and others that I would write about things I have learned as a mother of an Autistic son so many times.
Aidan is 15 (nearly 16) now, 6 ft 1 inch tall, and sitting some exams in a few short months, at a special needs secondary and mainstream college.
I have shared stories here and there, some painful, some hilarious, and some insightful, maybe even helpful. But I always had an excuse handy as to why I couldn't start this journey.
And so here we go with the first of my things I have learnt as a mother of an Autistic son.
1.Growth hurts - a lot.
When Aidan was a toddler, he did not develop speech. If he needed or wanted something he would grab me by the hand and drag me to the bathroom or kitchen if I was lucky, but more often than not he would just explode in a meltdown, sometimes smashing his head of the radiator in frustration, because what it was he wanted had not appeared. He would bash at me with his tiny fists in such anger and I would be lost as to the reason.
He was also resourceful and took to eating the cat biscuits straight from the bag and drinking from the toilet. I wondered just how bad a parent I must be for him to be doing these things.
Getting his diagnosis, which is another story for another time, allowed me access to the National Autistic Societies Early-bird programme Here I learned that he could not differentiate me as a person separate to him. To him we were one. He expected me to know he was thirsty or hungry, feeling unwell, in pain, needing his potty. And to his mind, I was ignoring him, and hurting him by not understanding him.
So we tried Makaton as our first step - a simple form of sign language. I picked a dry day, sat in the garden just outside the doors, and every time Aidan tried to grab my hand I said "No - Aidan must say "Mummy" "Come"" and signed the two signs for those. As you can imagine, this resulted in quite spectacular melt downs and it was very hard as a mum to not give in to that little confused, scared, ball of snot.
But we persevered and by day eight or nine of repeating this every time he tried to take my hand - I should point out now I still fed, watered, changed and cared for him through this (just in case you were getting worried there) - he finally signed the word "Mummy". Well I showered him in chocolate - my main incentive for the rest of the makaton training and our progression to PECS - and it was so amazing to see that little light switch come on in his head as he saw I understood him. The sign for "come" came soon after and he loved lording it over me with his "Mummy come" commands and I was only too pleased to oblige.
That simple step was the start of his journey of communication, and by 4 he had some speech and by 5 he had said "Love you" for the first time which of course led to me being a blubbering wreck on the floor. God knows what he thought of that! Now he can hold a good conversation however he has several learned phrases - again for another time - which means he doesn't always get it 100%. But then, who does! He still resorts to signs when super distressed or in a noisy environment, and the whole family have adopted the sign for toilet as it is a handy one to have.
And so, No. 1 in things I have learnt as a mother of an autistic son:
1. Growth and development are not easy. They are hard, uncomfortable and can make you unhappy. But when you look back, you see that the pain was necessary and the end result was worth it. So don't give up. Ever.
Aidan is 15 (nearly 16) now, 6 ft 1 inch tall, and sitting some exams in a few short months, at a special needs secondary and mainstream college.
I have shared stories here and there, some painful, some hilarious, and some insightful, maybe even helpful. But I always had an excuse handy as to why I couldn't start this journey.
And so here we go with the first of my things I have learnt as a mother of an Autistic son.
1.Growth hurts - a lot.
When Aidan was a toddler, he did not develop speech. If he needed or wanted something he would grab me by the hand and drag me to the bathroom or kitchen if I was lucky, but more often than not he would just explode in a meltdown, sometimes smashing his head of the radiator in frustration, because what it was he wanted had not appeared. He would bash at me with his tiny fists in such anger and I would be lost as to the reason.
He was also resourceful and took to eating the cat biscuits straight from the bag and drinking from the toilet. I wondered just how bad a parent I must be for him to be doing these things.
Getting his diagnosis, which is another story for another time, allowed me access to the National Autistic Societies Early-bird programme Here I learned that he could not differentiate me as a person separate to him. To him we were one. He expected me to know he was thirsty or hungry, feeling unwell, in pain, needing his potty. And to his mind, I was ignoring him, and hurting him by not understanding him.
So we tried Makaton as our first step - a simple form of sign language. I picked a dry day, sat in the garden just outside the doors, and every time Aidan tried to grab my hand I said "No - Aidan must say "Mummy" "Come"" and signed the two signs for those. As you can imagine, this resulted in quite spectacular melt downs and it was very hard as a mum to not give in to that little confused, scared, ball of snot.
But we persevered and by day eight or nine of repeating this every time he tried to take my hand - I should point out now I still fed, watered, changed and cared for him through this (just in case you were getting worried there) - he finally signed the word "Mummy". Well I showered him in chocolate - my main incentive for the rest of the makaton training and our progression to PECS - and it was so amazing to see that little light switch come on in his head as he saw I understood him. The sign for "come" came soon after and he loved lording it over me with his "Mummy come" commands and I was only too pleased to oblige.
That simple step was the start of his journey of communication, and by 4 he had some speech and by 5 he had said "Love you" for the first time which of course led to me being a blubbering wreck on the floor. God knows what he thought of that! Now he can hold a good conversation however he has several learned phrases - again for another time - which means he doesn't always get it 100%. But then, who does! He still resorts to signs when super distressed or in a noisy environment, and the whole family have adopted the sign for toilet as it is a handy one to have.
And so, No. 1 in things I have learnt as a mother of an autistic son:
1. Growth and development are not easy. They are hard, uncomfortable and can make you unhappy. But when you look back, you see that the pain was necessary and the end result was worth it. So don't give up. Ever.
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