Monday, April 20, 2015

Lessons from a Mum

This is from a lady I respect and admire a lot. She seems to me like someone that can take any skill and develop it excellently in a short while. Also she has twin boys that seem like the cutest set of twins in the whole world. They remind me of how cute children with autism can be. Today, we can learn from her somethings that she has learnt in her years as a mother of children on the autism spectrum.

"I am a parent with a set of twins diagnosed to be on the Autism Spectrum. Yes, as soon as I heard, it broke my heart, despite the fact that I already knew the diagnosis was coming.

Twin two's autism was very obvious; no speech at all, no eye contact, not responding to his name, laughing to himself, every classic autistic symptom. So I knew what to expect, but it still hurt to hear the diagnosis.
 However Twin one did not show any of these signs, so when he got the diagnosis, it was like a double edged sword to my heart.

Twin one’s autism was harder to diagnose as the specialists weren't certain. He was friendly with them when they paid us a visit at home but His speech wasn’t great and I hoped and prayed he was just having delayed speech. In fact, at the initial stages, the specialists assured me with confidence that he was not autistic, as autistic kids are not friendly.
However, more detailed examinations were carried out, the specialists went to the twins nursery to watch them play and relate with other kids. They found that twin one had issues relating to his peers.

We do get some financial support due to their situations, as required by the UK law. The extra money though, does it make your life any better?
Yes, a little bit.
In life, the lack of money makes everything harder, but as soon as you get a little bit extra financial help, it’s not as bad.
For example, taking care of twins is exhausting enough , but when they are autistic, it is super­exhausting,  and you are only fuelled by the love for your kids . UK is not like Nigeria where you can get help easily, whether paid or family and friends. No , its very difficult to get help. So, with this little financial assistance you get from the government, as a mother you can decide to treat yourself and /or your family to something nice, maybe a nice holiday, a break from your normal challenges in life. Just something to make you feel like your old self and forget about your worries , even if it is only for a short while.
The twins also get special education. Normally, UK school ages starts at 4. If your kids are less than 4 years old, you have to pay for their nursery ( or partly pay) but due to our situation, the twins started to receive free full time early education when they were 3, to at least help them catch up with their peers.
It kind of worked as one twin has improved so much they would be going to a mainstream school, while the other goes to an Autism specific school.

I think the best way to deal with autism, like many other challenges, is to just get along with it. I am so used to it, I forget my kids are autistic. I feel weird when I tell my friends that my kids have autism and they give me a pitying comment or look. I don’t pity myself. My kids are different, yes! But so are many other kids.
I have to point out to people that they are autistic so that they can understand why the boy does not reply their questions, but to me, I feel like that’s life. If I didn't have an autistic challenge, it would be something else, really.
It also helps that my closest friends have autistic kids too. This is the best support you can find, as no one is more understanding than another parent who knows exactly what you are going through. So we get together for drinks often with our kids all playing together.
So, surround yourself with tolerant friends and family, educate them, be patient with them while they catch up. Just like you've had time to process the needs of your child, they would need time too.

With time as your autistic child grows, they fall into their own routine, you learn what they like and what they hate, pretty much like every other child, except that a child living with autism is more rigid, they are not flexible and don't understand change. So you have to adapt yourself as parent to these needs
You also have to avoid paying so much attention to the internet and what others say about their experiences or what they think they know about autism.
Autism is very individual. There is a saying within the autistic community, “if you have met one child with autism, you have only met one child with autism”. This means that no way on earth would you find another child like that child.
         Picture courtesy Autism Speaks

Every child’s symptoms are different , and I should know with my autistic twins.  So never let anyone tell you what to do or how to do it. Take advice? Yes! Do take advice, but you should apply these advice with caution and adaptation; like break it all apart , use what works for you discard what doesn’t or wouldn't work for you.  For example, I had family members and the internet telling me I was a lazy mum because my kids weren’t potty trained at 3 years old. I ignored all of them because I knew, I had to wait till they were ready to be potty trained. It was one of the best decisions I ever made. It took half a day to potty train twin one, he was ready and it was such a stress free experience.
Twin two took longer, I waited till he was almost 4, he got it immediately too. However he has physical challenges pulling down his pants, so there are small issues to work on. But the most important thing is , he isn’t stressed out because of the potty training, he is taking it in his stride and so am I.
So to all parents of children living with autism out there, just love your kids the way you should, or even more than you should. This is your life, it is not the way you wanted it, but it is still your life no less; and what you make of it, is what it is going to be. So enjoy the ride."

Thank you for reading. We still have others to learn from on this blog, so come back for more gist.

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