How Autism has touched me

As today is World Autism Day I thought I would write about how autism has touched me and my family.

I married my husband 12 years ago, in 2001 we welcomed our gorgeous son Jonah. He was a beautiful boy and still is, nothing was wrong with him. He met every milestone and every skill mastered at the right time. Then in 2003 we gave birth to our second child, a girl, Hannah Jade. She also met every skill and milestone without any trouble, although Hannah did suffer from allergic reactions at about 2 years old that sent her body being covered in hives, almost daily for about 6 months.

In 2006 we anticipated the birth of our third child, Naomi was born, a girl, and issues arose from the start. When Naomi came out she didn't cry. She also had alot of mucous and had trouble breathing. They had to put a tube down into her nose to see why she was having trouble. It would be months before they realised what was wrong with her and her breathing, something that should have been picked up from the start. I remember thinking that something was wrong with my baby the first time they brought her into me. I just 'knew'. She had a look of a weak, fragile creature, with longing eyes...don't ask me what that mean't. I just know that God gave me a sign very early on.

But

I instantly fell in love with her, just like my other babies. I remember her being so quiet. She was just so quiet. Always.

Naomi had alot of trouble feeding and her breathing was very noisy. Eventually she attached with a nipple shield. Her suck was very very poor, and she had alot of trouble gaining weight for the first 12 months of her life. We went to many doctors during that time. She was diagnosed with severe GERD (reflux disease) and was monitored for a feeding tube. I was terrified. If only that was all we would deal with. Then she had trouble moving her bowels and had an operation to investigate her bowel and it found that part of her Colon was redundant so she suffered extreme consitpation. At four months they discovered that she had choanal stenosis, where her nasal passages were so narrow that she was hardly getting any air through. She had surgery to correct this congenital defect. She was on an array of medications on those first few years and I just felt like I lived and breathed doctors and hospital appointments. She had at least 6 general anaesthetics in her first 18 months of life.

Life just kept going and at about the age of 12 months she had grommets put in. I remember after that she said her first word "DAD". Then her development, although slower than other children, continued to rise. Then at about 15 months old she started to walk. I could tell something was not right straight away. She would fall all the time and she walked as though she was drunk. this did not start and then stop like a normal child would when  it got used to walking, it continued on and her walking did not get better for a long long time. At this time we went back to her peadiatrician and he sent her for some neurological tests.

The neurologist, one of the best in sydney sent her to the genetics team and also did alot of tests. We wanted to find out what really was going on. The process took over a year and just shy of her third birthday we got a call from the geneticist to say that Naomi had a rare chromosome deletion called
1p 34.2. It meant that she was missing part of her first chromosome. The problem was that noone could tell us what that meant as they didn't know what alot of the genes she was missing were responsible for. They didn't know, and we didn't know. We were in the dark. It was a devistating time, but we were thankful that we had an answer for why she was like she was.

At about this time we started seeing alot of changes in Naomi. Unless the routine stayed the same she would not cope, she lost alot of the words she had and would just scream for things that she wanted and she had major sensory meltdowns over stimuli that you and I wouldn't even notice. She also was withdrawn alot more and would only play alone. She had no friends. We saught the advice of a developmental peadiatrician in Sydney, one of the best, and another child pspychologist and  they told us that Naomi had signs of Autism. I remember the day that I fould that out. The sense of relief that I had an answer. That EXPLAINED what she did, and why she did it, unlike the Chromosome deletion which explained nothing to us. However, it would be a word that would be written on my heart for life. Autism. What did that mean to our daughter? Would she make friends? would she write, would she read? would she get married? have children? would she.......???

I still ask these questions each and every day and some weeks I am going well and ontop of the world. Life is good and I have it all under control and other days Autism takes over my life and I get angry at the world and start saying 'why us?' why her?, its not fair etc. Its a rollercoaster like that. And that is OK. We are ALLOWED to feel that way.

Our schedule is so busy, we have to pack in alot more than the average family and our daughter doesn't get to be a child as much as we bombard her with therapy, physical and mental and try to teach her what is and what isn't appropriate in this world that she has been placed in. She struggles every day.

That is the hardest part. To see your baby struggle. It breaks my soul.

But there are also amazing successes. She is in a mainstream school, she has started to read and write and has friends. She is doing well.

Since Naomi has been diagnosed with autism, my daughter Hannah has also been diagnosed with aspergers, which is another form of autism spectrum. Hannah struggles socially and with alot of sensory issues, but she manages to cope in her world. It is at home that we have most of the trouble and the meltdowns that come with holding it in all day.

My nephew has also been diagnosed with autism and my niece. So it seems that for our family, there is a genetic link.

The one thing that I want is for people to be aware, and to be understanding. Our kids did not ask to have autism. They want a life that is full and happy just like you and me, not to be treated any differently, but given the same opportunities. To live life to the full.

To be loved.

Has Autism touched your family??