A couple of posts ago I mentioned I was planning a series of interviews here on the blog. I am going to call them ‘from the edges of the spectrum’ simply because I can’t think of anything better (open to suggestions!).
The interviews are all about sharing; sharing insights into other families living on the edges of the spectrum, sharing information from specialists and therapists, sharing our stories. With the hope of finding some common ground and extending our support networks. And with that, as my blog is still only fairly new, I thought I would kick off by interviewing myself. Don’t worry – far more interesting people will be shared over the coming weeks!
In the spirit of sharing, if you have any questions, I encourage you to please ask. I will always do my best to answer, or to find an answer for you.
1. Tell us a little about your family, in as many or as few words as you like. Who are you?
We are a family of 3, mum, dad and Poss who is almost 7. We also have a selection of pets; a small white dog, 2 cats and a pet rat. We even had sea-monkeys but they didn’t survive the recent hot weather! We are surrounded by a wonderful family, although they are spread far and wide, making day-to-day support hard and that much more treasured when it comes.
2. What ‘label/s’ does your child/children have? And when were they diagnosed?
Poss was officially diagnosed with Aspergers in July 2010, although we received a ‘provisional diagnosis’ in May 2010. Even though we knew she would probably end up with that diagnosis after going through the diagnostic process, it still shook us to the core. I remember my mum saying to me at the time ‘just because you can see a punch in the face coming, doesn’t mean it won’t hurt’. How true.
3. What prompted you to seek a diagnosis?
Poss had just started school. Despite being a ‘daycare baby’ for many years, she really struggled adjusting to school life. She hid under tables, she ran away, she cried, she squished herself into lockers, she yelled, she was intense, there was a horrible incident when she hit another child. Her behaviour in no way matched her academic ability or the little girl we knew.
We all thought it was because she was on the young side, or maybe… who knows… I blamed myself I guess for being a working mum and so did some of the other parents in her class. Openly. It was a hard time.
School guided us through the process of finding a paediatrician. She met with Poss for a total of 10 minutes before telling us she was pretty sure that she was on the Spectrum. I had no idea what she was talking about. I cried. Husband cried. My mother cried. Then my nan died a week later (not related of course, but at the time it was all too much). And the testing begun. It was a hard time.
4. What traits of their diagnosis are the most obvious/cause the most issues?
I found this a hard question to answer and almost removed it (interviewers prerogative!), so while I am going to answer it, I don’t want this to be taken as a complete list of all her challenges. It changes and evolves daily. Steps forward with some aspects creates steps back with others. Her list of triumphs is longer and one day I will share that too.
– She is extremely sensitive to noise and often wears big pink headphones to block it out. If the headphones aren’t available, she will retreat into small spaces; under tables, in cupboards, under her bed.
– Her honesty and inability to filter her words creates both embarrassing and hilarious moments. She can’t understand why everyone isn’t as honest as her. In her world, actions and words mean exactly what they say – she often says to us “just say what you mean”.
– She finds sleep, both falling and staying, extremely difficult.
– She suffers from high anxiety relating to so many aspects of her life.
– She needs her routine. Any changes to it causes stress. Stress causes lack of sleep. Lack of sleep causes stress. So the cycle repeats.
– Her intensity can be really hard to understand. Friendships with her are so full on and she often scares children off. I find it really hard to watch her play. There are so many things she simply misses, doesn’t see, doesn’t ‘get’. We are blessed, so blessed, to have a wonderful group of girls who love her and provide her with such great examples of friendship.
5. What therapy or strategy do you think has made the biggest impact on their life?
Social skills training with her peers, regular psychology sessions and occupational therapy have all made tangible improvements.
We have also had a wonderful teacher for the past 6 months, along with her brilliant aide for the past 12 months. Together they have taught her patience, quiet and persistence. They have also nurtured her, pushed her and extended her. And we couldn’t be more thrilled that we have them both again for Grade 2!
6. What strategy has made the biggest difference in YOUR life?
Understanding two things, which have stopped us torturing ourselves:
1. It’s not our fault. For so long we thought we were simply bad parents who alternated between spoiling our only child and neglecting her by leaving her in day care. You know what? We did neither of those things. We have an amazing little girl, who has some challenges, but it’s not our fault.
2. It’s not her fault. Sometimes she does amazingly embarrassing things. Melts down, lashes out, does something stupid and ill thought out. But it’s not her fault. She doesn’t do it to piss us off or to embarrass us. Sometimes she is simply overwhelmed by things that are out of her control. It’s our job to minimise these, but it’s not her fault.
7. If you could do it all again, is there anything you wouldn’t do, or would do differently?
We were fortunate enough to have a quick diagnostic process, some families go through it for years. I don’t know that I would change anything. We are doing the best we can, with the information we have. Every day we learn more, she learns more and our strategies have to change.
8. Is there a particular resource, book, website that you would recommend to other parents?
Our first stop after diagnosis was to a bookstore, where I bought Tony Attwood’s book, The Complete Guide to Aspergers. This became our dictionary as we went through those first few months. We have also found much information on the Autism Victoria (Amaze) website, Sue Larkey’s website (hearing her speak live was a wonderful experience), along with the Aspergers Support Network.
We have also had support from Grace and the brilliant team at Autism Advisory & Support Services. They offer a 24 hour information and support telephone service, which we have called on numerous times. And they do this with no government funding and with so much care and understanding.
Finally, there are some wonderful Tweeps on twitter, who live this every day. They have been there and tried that. They are a wealth of knowledge and understanding. I will be sharing some of their inspirational stories with you over the coming weeks.
9. If you would like people to know one thing about your child, what would it be?
She is an amazingly sensitive, smart, feeling girl. She is wise beyond her years and hilariously funny. She makes the most loyal and dedicated friend, honest and caring. Sometimes she will melt-down, loose it, be impossible and defiant. But it’s such a small part of her and those challenges make her successes so, so much sweeter.
10. Where to from here?
We are making some minor changes to her therapies this year, but essentially this year will be consolidating what works and what doesn’t. Focussing on the good and building on it. We have a fabulous team with us now and we really hope to continue the good run we had last term. There will be challenges, changes and bad days. But we will keep trying until we get it right. Whatever that may be.
Come back next Tuesday for the next installment From the edges of the Spectrum!