Raising Our Autistic Child

I am often told l am lucky because Damian’s autism is not “too bad”. Am I lucky, am l? Of cause not. I have put in a 110 million percent into this. I did not choose this, it chose me. Young mum, with no clue as to what I was doing sitting in one of my lectures at university (1st year), in Special Education Studies. Someone was presenting something on autism. I sat there and listened. In my head, I started ticking one box, 2, 3, 4, OMG what!!!!! I lost count, I excused myself from the lesson. I went to the bathroom and cried. I did not want my son to be disabled, it HURT, it hurt because it was true. I asked to leave early and went home to call Damian’s health visitor. I told her Damian was autistic and I needed an urgent appointment. Lucky for me, Laura was lovely she squeezed me in the following day.

I sat there and listened. In my head, I started ticking one box, 2, 3, 4, OMG what!!!!! I lost count, I excused myself from the lesson. I went to the bathroom and cried.

That is when the process started, however, it was appointment after appointment. Damian taught himself to read and use the computer at 1. A few of the professionals were fascinated by this little person who could use technology with such ease, he would change languages on phones or play and mix music on the computer yet could not interact with us. At 3, he started nursery at an autism resource base attached to a mainstream school, perfect right! It was a very small class of 6.

I fought to get this place, places for special needs children are always limited. I insisted on early intervention and he finally got his place.

As fate would have it, for my 3rd year at university I chose The St Christopher Special Needs Academy for a work placement. It was a lovely school and all the children’s learning outcomes were followed to the letter. They all had different learning needs. There were 8/9 kids in my class, a teacher and 3 learning support assistants (LSAs). As much as I loved the school, I was adamant Damian was going to a mainstream school. A few weeks before Easter, I got his proposed statement of education (this is a document that has reports from all professionals involved with the progress of your child), I cried. It was in black and white how much he was struggling, he was below average in everything. We had a heart-to-heart with my partner Zinhle and agreed that he needed to be at St Christopher’s. On my placement day, I had a meeting with the head teacher, Mr Jackson, he had read the proposed statement and said Damian would benefit from his school.

Ten years later

Ten years later l still treasure his words of wisdom; “Damian is going to be one of our success stories, if you’re willing to work with us”. I loved his positive attitude. We discussed this with the family, no one besides my dearest dad (God rest his soul) encouraged us to put him in a special school. We had a 4-year-old who was not potty trained, had limited speech, was impulsive and oblivious to the world around him. We had no help from anyone, but we soldiered on. I did a bit of ABA, TEACH, SPELL (therapies popular in America) gluten and casein free diet, omega 3 oils just EVERYTHING! The internet was my best friend. I had a visual timetable in my lounge so that he knew the structure of the day. I had picture exchange communication cards (PECS) on my hallway hall and if he needed, for example, a drink; he would get a card with a picture of a drink and give it to us. No card, no drink. Cruel, l know, but autism is all about early intervention. I wanted my child to say l want a drink and not to point, l knew he could do it. And eventually he did.

What would be the point of teaching a child times tables when they can not brush their teeth.

When you have an autistic child and no help, you become strong. Damian is a high functioning autistic boy yet he lacks social skills. Often people have asked why l allow “them” to put him in a special school, l should put him in mainstream. What most people do not know is special schools follow the national curriculum and each child is taught according to their ability. What would be the point of teaching a child times tables when they can not brush their teeth. Special schools teach basic life skills first, before worrying about league tables. What has hurt the most is people who assume my relationship with God is not strong that’s why my child is autistic. Are there no disabled people in the bible? There are of course. I always say faith and action gets results.

I am Positive

I am not lucky, I am positive. I am not scared of trying new things with my son because I want him to become independent. With a lot of love and a lot of prayer, he is getting independent.

Early intervention helped Damian but I have put in the hard work at home as well. If anything, my experience working in post 16 special needs at college showed me how much hard work Damian was and what I needed to do. It was not easy in the early years, but my friend (Damian’s old teacher) always encouraged me to be consistent with him. I have always asked for help when l could not cope, Children and Adolescents with Mental Health Services (CAMHS) were a God sent, they taught me skills that l use to help Damian when he is not coping well.

Dance

When Damian was 6 he was watching 2 dance crews, Diversity and Flawless on Britain’s got talent dancing, he announced he was going to dance just like them. He asked to go to dance lessons. We took him to drama and dance class at a local special needs group. He loved it so much he now had something to look forward to. At 10 he started dancing at a different school with Neurotypical (NT) children. NT is the preferred name (not “normal”) in the autism community. A few months later he went for his first street dance competition. That first time, neither him nor his team won but we were just so happy it did not matter. The more he danced, the more social he became. At dance he was “forced” to interact with other kids as people with autism find it difficult to interact socially. Eventually Damian’s dance crew won their under 14 beginner world champions in Glasgow in 2015. This is was one of our proudest moments, we had faith but we did not know it could lead us there. Our Damian was making us proud. His trophies and medals are his most prized possessions.

Autism’s Got Talent

In 2016, he auditioned for Autism’s Got Talent (AGT) and was invited to dance with his team at mermaid theatre in London. There was a few celebrities at the show. The show was beautiful, it was my first time seeing so many talented autistic in one room. Let’s just say, everyone needed tissues.

In May 2017, Damian fund-raised money for the Redcross. His dance was inspired by the Syrian crisis. He danced so beautifully at the event. When he dances, no one sees his autism. All that people see is an amazing dancer and that is how it should be.

In August Damian was awarded a Pineapple dance scholarship by Anna Kennedy charity, the people behind AGT. He also performed at their roadshow in Basildon a few weeks ago. Dance has unlocked a different and exciting world for Damian and he loves that. Our Sundays are for dancing, he dances at Flawless dance from 10am-1pm then we drive to Pineapple studios where he dances from 2pm-5pm. Dance has allowed him to mix with different people and unlock his potential. He is integrated to a mainstream school and walks there and back on his own. At school he plays basketball and football, recently he added athletics to his list. He also takes part in inter-school tournaments. He has also done 2 levels in gymnastics. MT

Has your child been diagnosed with / or is suspected to have autism?

Early intervention is the best way to support an autistic child, the younger they are, the more you can help them. Most, if not all, autistic people have an obsession. Tap into that obsession, if they like music find them a music class. If like Damian, it is dance, then get them to a dance class or if it is Lego get them to the big Lego store in London, build with them, be part of their world.

Most of all, make new friends with other special parents, you both can take your children to the park, cinema or lunch and your kids will become friends.

If a cure for autism was ever found, we would not take it. For us, Damian is simply the best. He always says; autism is his super power. Autism has taught me love. However tired, unwell, depressed, happy, sad or lacking in faith l feel; my son has reminded me that autism is just a label, he is still the same boy l had 15 years ago. He is a blessing, our gift (Sipho). He has defined what unconditional love is. Next time you see a person with a disability, be kind it costs nothing. Acceptance in our community encourages parents to feel confident to ask for help from services that would benefit them and their children.

There is a lot of information and groups on social media, especially Facebook that are very supportive. You are not alone. These are my 2 favourite organisations:

National Autistic Society (NAS) www.autism.org.uk

Anna Kennedy Online www.annakennedyonline.com

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