I thought for something quite different I’d give an insight on what it’s been like for us to raise a child with special needs. We are very blessed because Liz has a mild disability so I don’t know what it’s like to have a child in the severe category but I figure we all go through the same emotions and similar challenges.
When Liz was born on December 31st 1989 we had no idea of the journey ahead of us. She was your typical baby and loved being handled by people. She crawled at 11 months, walked at 12. She got out of day and night nappies when she was just over 3, thanks to her Aunty Celline who had her for that week. But she didn’t speak. As she got older she didn’t like physical touch.
I always had this dream of walking with my daughter, holding her hand and enjoying hanging out. I had to wait 16 years for that to happen.
Liz was just over the age of 3 and I noticed there was something ‘different’ about her. Her speech hadn’t developed beyond one word answers. Her younger sister was more advanced than her in many ways and she is 16 months younger. Liz didn’t want to be cuddled and was happy just to go through life at a slower pace. I tried to give Pete hints that I thought something might be not right and he just shook it off. When he was young Pete struggled academically, had some home challenges and is severely dyslexic. No way did his daughter have any issues!
Pete and I went to India for 3 weeks while the girls stayed with my sister. Unfortunately they both got chickenpox so she was very happy to hand them back at the end of it all! It was then that our pastors approached us and said we should get Liz checked out as she wasn’t at the same level as her peers. So off to our GP we went.
He put us on to Jeanette Van Der Wal, a speech therapist. She was at the same therapy centre that Pete went to when he was a kid.
Liz started speech therapy with Jeanette pretty much straight after visiting our doctor. Her first goal was to put 2 words together.
Our lives have never been the same since.
For the next few years there were visits to child psychologists, occupational therapists, speech therapists, blood tests, tests for her mental status and surgery. There’s the interdisciplinary report, Fragile X testing, the CELF-3 test, the non-verbal assessment etc. Every time you walk away feeling drained and that it’s your fault. There’s a whole new language you have to learn to be in synch with what the specialists are saying.
We were always being asked for descriptions of the pregnancy, the birth, her milestones and her sleeping patterns. Liz went through so many tests over the years she knew how to do them by rote. I remember once she said she had already done a particular one and wasn’t prepared to do it again.
She’s one smart cookie.
No one ever labeled Liz, especially Jeanette. She didn’t want Liz to be put into a box because we would lower our expectations. It was the best thing she ever did and we are forever grateful. If we knew of Lizzies label earlier we probably would’ve gone soft on her. Instead we treated her as normal as her sister.
In some ways she got extras like going to Riding For The Disabled. It is a brilliant setup and Lyn who still runs it to this day helped build confidence in Liz. She taught Liz sign language and didn’t let her cut corners. To this day, Liz is great with horses.
One day a specialist just let it roll off his tongue that Liz was considered mentally disabled but in the mild region. We were devastated as we’d never thought of her in that way. We had a disabled child.
So – we went back to Jeanette. I remember her saying that was the reason why she never labeled Liz, because we would see her differently.
But Liz is different.
She can’t spell for peanuts, her speech gets unclear, her co-ordination leaves a lot to be desired and she just doesn’t get social cues, which are so embarassing. There’s things she had to learn to do – like buttons. Liz was 16 before she could do up her laces.
People made huge judgment calls as to why she was the way she was.
That’s a hard one. Super spiritual people tried to cast demons out of her, some said it was because we were ‘too busy serving the Lord’, others were just jerks. In the Church the answer was ‘just pray and God would fix it’. What if God doesn’t see anything wrong with someone having a few extra needs, after all, we’ve all got them?
Being different is okay, that is until you realize you’re different.
It wasn’t until she was in her late teens she understood how different she was. Her sister had lots of friends, was a main vocalist at youth group and held an after school job. Liz felt she was a nobody – invisible. And she was right, because nobody wants to give someone different a chance. They make us feel uncomfortable because they’re not ‘normal’. There was a time that I could see a bit of her dying on the inside day by day. She started emotionally shutting down, actually I saw her getting depressed.
And then there was the change.
Pete talked with Kerry Robertson, one of the youth pastors and explained the situation. Just one person can make a change and it was Kerry who did it for Liz. He asked her to be a photographer at their events. Liz became a new person. She wanted to go to youth group, she became very good at taking photos. Even now she gets unique perspectives when photographing.
Remember, this is a kid who was told of all the things she couldn’t do. Couldn’t play sport – she plays hockey and soccer. She couldn’t do anything with fine motor skills – she loves to play the drums. She shouldn’t be able to hold a camera long enough to get good photos – yet she does. She couldn’t hold a fulltime job – but she does. Okay, she volunteers at a preschool, but it still counts.
She joined the serving team at church and was the youngest deacon ever to be allowed. She found her place of belonging. She inherited a small team of people that treated her as a human being.
Yes, Liz has a mild mental disability. She is dyslexic and her speech is not clear. Liz exhibits all the signs of having Apsergers Syndrome, so that’s what we say to people. We never say ‘she has a mental disability’. Considering we only use a small portion of our brains, I figure we all have a way to go to getting to our potential.
But she is a great kid with the best personality.
I’m the first to admit that it hasn’t been an easy journey. Did I do something wrong during pregnancy, is it genetic? The nagging questions don’t go away because sometimes there isn’t any easy answer.
Looking back now I wish I had handled Lizzies schooling better. She wasn’t ready to learn at 5, 6 or 7. Liz was ready at about 8 years of age, but of course I felt pressured by society to ‘make this girl learn’. Liz doesn’t learn from a book, she learns from experience. It takes her a long time to get the information from short term to the long term memory, unless it’s an experience. We call her our human GPS.
Liz likes having a routine, she struggles when there are changes – big time. Now, she can fly back to Australia but she HAS to have an excel sheet with every detail of her trip. Every day her routine is pretty much the same.
And yet, she’s up for an adventure. Every day she goes to work on a motorbike (as a passenger). When we talked about going to South Sudan or spending a year driving around Africa – she was in for it.
Liz is now 25. I can’t imagine what she would be like if she were ‘normal’ because she is the way we’ve always known her. Liz will always be dependent on someone to help her through life. We don’t think she’ll ever live independently, she will always need support. We’ve had to make backup plans if something happens to us here in Africa. We’ve got friends that will oversee the selling of things and getting her back to my sister in New Zealand. Liz is hopeless with money and doesn’t understand the value of it. That’s why I control her bank account. Although she’s 25 in many ways she behaves like a person in their early teens.
Life is not easy for Liz, but her amazing attitude gets her a long way. Most people know ‘there’s something not right’ about her but can’t quite put their finger on it.
Liz is different and I’m glad she is who she is.
I’m also glad she got to grow up in New Zealand with the great services they have there. Unfortunately, here in Kenya there’s not a lot for special needs kids, unless you have a lot of money. I’ve taken what we’ve learned with Liz and will help as many kids as possible over here. Kenya has a long way to go in its services for disabled people and I would say it’s the same across East Africa.
I hope I can help kids and their families in the same way we were helped and with the same compassion and grace we were given.
Thank you to the people who have done life with us and Liz – you’re amazing.
And thank you Liz for teaching us patience, forgiveness, grace, long suffering but most of all how to rejoice. I remember the day you first said the three most important words ‘I love you’. I was hanging out the laundry and you were playing in your garden. It’s burned in my memory forever.
Now that’s priceless.