Frequent blogger and AsIAm Liaison Officer, Carrie Burton, writes of the challenges of a third diagnosis in the family, with the recent diagnosis of her son, Jack.
On May 11th 2014 we were given our third diagnosis of special needs in our already unique family. Our son Jack, 2 years and 8 months, had autism. It came as no surprise to me as for months I had known. Sometimes mothers instinct is a bitch. You know it’s always right but you don’t always want to hear it and If I’m honest I didn’t want to hear it.
I had lunch with a great friend of mine in February, a fellow special needs mum, and told her my fears about Jack. I was waiting for her to say ‘ your seeing stuff that isn’t there’ but she didn’t. Instead she did what any great friend would do and hit me with the truth and told me she had thought it too, hence why she arranged the lunch. Much to my embarrassment I broke down in tears in the busy cafe and told her there was no way I could do it all again. We’d been through 9 years of hell fighting for Mia, our eldest daughter, who has Aspergers Syndrome and ADHD along with other conditions. Ava, our other daughterm was just diagnosed with ADHD and dyslexia. I was so heartbroken I couldn’t keep it together.
I lashed out at how unfair it was that we were being put through this again – couldn’t any of the kids catch a break? Why us? Did the man upstairs not realise our plate was already overflowing and the responsibility of two special needs kids already, wass at time drowning me? My friend assured me I would indeed cope as we always had and we were picked because of how great parents we are. I laughed and said you should see me on the bad days and we both laughed. I later confided in my family and they agreed we should have Jack assessed. They thought he had some issues but couldn’t see them all as they didn’t live with him. I kept repeating “I knew he was autistic”, it was only a matter of time until it was official.
Daniel wasn’t to0 sure. He agreed Jack had issues including the fact that he shows no affection to anyone except me. Ever. He hates people touching him or forcing kisses. not even Dan could bribe him for a cuddle, that was my major worry. How devastating for such a fantastic Dad to not receive any affection from the son he had longed for. It broke my heart when Jack would cling to me and only me, isolating Dan. Months before we had joked that Jack was a “Mummy’s Boy” and I reveled in having a boy. I was thrilled we had such a great bond. The moment the midwife said “Its a boy!”, I instantly fell in love with him.
We had no idea the baby was a boy. When he arrived we thought “family complete”. At 18 months old though, my instinct was telling me Jack was no ordinary boy. He was terrified of noise – cars, hoovers, hair dryers, cafés, discos, sudden noises… the list goes on. Also the lack of affection, the anxiety when we left the safe haven of our house, the never playing with toys, his obsession with one thing, no interest in other kids, the total lack of realisation of dangers. He constantly runs off, puts his hands in cookers, climbs like a monkey. I wanted an answer so I knew wasn’t going mad and could get help for him.
Early intervention is key. Mia missed out on all of that. I would not allow that to happen this time. I got over my denial phase pretty quickly and jumped into getting him assessed. Denial would get him no where. I knew my son and I knew I was right. I had people say “no he’s not” which drove me mad. I still have people say to me ‘Mia is grand now isn’t she!’ I do be so tempted to go mental but what’s the point!You can’t change people’s opinions.
Once we live in reality and face it with motivation and positivity, our kids will learn to live the same. Having special needs kids is isolating. We live differently. We live honestly. There is no pretense. A lot of people can’t handle that and that’s ok for them. Not for us. We need to live the way we live for our kids. No one knows the battle we fight every day. My sister said I make it look easy that’s why some people don’t get it. I agree with her, for years I was trying to prove to everyone we could do it but the last year I’ve decided to actually show us for how we are. It’s been quite liberating.
Maybe I was so heartbroken about Jack because I knew what was ahead. We had lived through it the last 9 years . The assessment came up and I was in a ball. Daniel was my strength. He was in a ball at Ava’s assessment,I was his support. We are good like that. We pick each other up and we hold on to each other. We’ve learned to. Only the two of us know what it’s truly like in our house, day in, day out. When the words came out ‘Jack is autistic’ the first thing I felt was relief. I was right, I wasn’t mental. When the Doctor said it I looked at Dan and we both knew what the other was feeling.
After the relief, you kind of go into shock. We went shopping and took jack to McDonalds and laughed and joked, tried to carry on. We went home and told family and got stuck into finding services. We had to look for a special needs pre-school, put his name down for services – OT, Speech and Language, the list goes on!
Two weeks later I hit a wall and let the heartbreak fall. I cried for myself, my amazing partner, our family and most of all for Jack. Life wouldn’t be simple. The grief set in and I remember that stage from Mia’s diagnosis. It’s a horrible stage that lasts a while. I still have it and make no excuses for it but it doesn’t define our efforts into helping Jack. I have my private moments of grief when the kids are not around.Straight away we started using aids we used for Mia. Small steps but a lot of steps.In the last two weeks, Jack has started to cuddle Dan and show him affection! I felt like all my Christmas’s had come at once. I can only imagine how Dan feels.
Jack has started to interact with Mia. It turns out they both are obsessed with Frozen and it has bonded them. Sure the constant singing of ‘let it go’ ten million times a day is driving me insane but I’d have it no other way. I burst with pride every time they sing it together, I never thought they would. Ava has always had a great bond with Jack and Mia. Ava is the sunshine on the bad days. She is the most beautiful, caring, amazing child you could ask for. So really we have been blessed with three beautiful children who are our teachers.
They teach us so much about special needs. They are caring, supportive, funny, crazy, entertaining balls of energy that have more sense then us sometimes. Yes we felt grieve, pain and heartache who wouldn’t, we are human, but these three beauty’s picked us to be their parents. We are lucky. We spend every day doing anything we can for them. We are so proud of them my heart bursts every time they hit even small milestones. Yes we have had to make huge sacrifices some that people don’t even realise how much but we are honoured to have them. The last month has been hard, we would have not got through it without the love and support from family members. That’s what we need, it carries us through.
There is no words that will ever be enough to show u how much we appreciate it. We have a different road ahead of us. Our goal this year is to get Jack into a pre-school and get early intervention. When we get married, I want my three angels there to share it with us, with Jacks fear of noise and crowds this is our challenge to take on. “e will get him there. We’ve watched Mia do things I never thought possible. Jack will do the same.
Image courtesy of jannoon028 / FreeDigitalPhotos.net
