A Sibling Raises Autism Awareness
I am incredibly grateful to Jesse Gordon who wanted to share his insight into having a sibling with ASD in a bid to raise Autism awareness in his school and community. Jesse, along with his sister, Amber, are older siblings to Kasey. They have played a key role in Kasey’s therapy and continue to advocate for their brother and assist in some of the challenges that Kasey faces.
To me, this family of five is simply inspirational and every member has invested their all into Kasey’s therapy and it has certainly paid off. Kasey began services with ISADD five years ago at the age of 2, nonverbal and with very minimal receptive language. During his initial two intensive years, Kasey learnt to talk using visual aids and his receptive language gradually expanded with the use of COMPIC. It wasn’t long before he started making sounds and these sounds became words which eventually became sentences. Now when Kasey makes a joke or we have a conversation about his weekend, it makes it hard to believe that it took three long months to establish his first basic ten nouns at the commencement of therapy.
Now, five years later, everyone is still working just as hard and the family is still incorporating therapy into everyday life. When I recently observed Kasey at school in his grade 2 class, I saw him raise his hand to answer questions about nouns, verbs and adjectives and give definitions of words that now fill his vocabulary.
Language has always been an area of difficulty for Kasey and it still requires a lot of hard work behind the scenes; however, he has always excelled in visuo spatial ability and it became apparent early on that there was great potential for this little boy. To the Gordon family – you never cease to amaze me with your determination and ongoing efforts in ensuring that Kasey continues to reach his potential. Last but not least, big congratulations to Kasey who has taught us all a thing or two about ASD and has never stopped trying. – Larni Mullan
Jesse, Kasey and Amber
Hi my name is Jesse and I am 11 years old. My family is made up of my Mum (Adelle), Dad (Drew), big sister (Amber) and little brother (Kasey). My little brother, Kasey is 7 years old and has autism.
What is it like to have a brother with autism? I have lots of different feelings about this. Sometimes I get frustrated because he doesn’t understand what I am talking about. Sometimes I get mad because he doesn’t understand that it can’t always be about what he wants. Yes we fight. He makes me laugh when he says and does funny things. Sometimes he tries to be funny and sometimes he doesn’t even know that he is being funny.
Sometimes it makes me sad because I feel like I have to protect him. I have seen his friends at school take advantage of him because he doesn’t understand. I don’t want him to get picked on because of some of the things he does. I have seen lots of people on the street look at him strangely because of something he has said or done. Some of his actions embarrass me. Like the times we used to take him to the shops and he would scream and scream and we didn’t know what was wrong because he couldn’t talk.
My brother has only been able to properly talk to us since the end of Pre-Primary. He was more than 5 and a half. So he couldn’t tell us what was wrong and would just scream. Sometimes I would walk away a bit because it was so embarrassing.
Kasey would even get cross if we didn’t walk the way he wanted to on the way to school and would have a big tantrum. Kasey surprises me with some of the things that he knows that I didn’t think he would. I try to help him with his homework but he doesn’t always let me. I get worried that my brother won’t be able to get a job when he is older.
When Kasey was younger, ISADD used to come to our home to help Kasey with therapy. My sister and I tried to help Kasey with the therapy too. I remember showing him COMPICs just to get him to understand simple words like ‘ball’. We would have to go over and over again to get him to understand even the easiest things. I used to be sad that it took him so long to understand something and I also thought that he would never get it. I even remember when he used to get one small chip as a reward for getting something right.
Considering my brother could barely speak when he was 4, he has come such a long way. Kasey now comes home from school and tells us what he has done for the day and who he has played with. We can have good conversations with him and he will even laugh at some of our jokes. Kasey even plays jokes on us sometimes. I don’t think he could have done this without the therapy that he he’s had.We still try and help Kasey today, but he can get annoyed with that l know that it has helped him so much.He also makes me happy when he wants to play things like Snakes and Ladders Mario Kart on the Wii, dodge ball outside and kicking the footy. He doesn’t like to lose, but mum says that I can’t always let him win.
My brother is obsessed with trains which makes me smile. He gets cross if I touch them, but Mum makes him share. Kasey can be loud and annoying, but even with all this I am proud that he is my brother and love him just the way he is. I think he has made me a more caring person towards other people.
So if you have a sibling with autism, maybe you have some of these feelings too and you shouldn’t feel bad about it There are lots of other kids out there just like us who feel the same way and have the same problems. Just keep helping where you can and try not to get frustrated.
– Jesse Gordon
And a note from Mum, Adelle:
We have been so lucky to have ISADD involved throughout our journey since Kasey’s diagnosis. Kasey was diagnosed just before his second birthday and it has been a bit of a rollercoaster since then. He is currently attending a main stream school with an E.A. We couldn’t be prouder of how far he has come and we owe so much to ISADD for this. I would like to send out and extra special thank you to the following people who have been involved with Kasey throughout the years, to get him where he is today. Without you, I don’t think Kasey would be in a main stream school and I don’t believe he would be conversing with us the way that he is today. Our hearts go out to Larni, Corrina, Audree, Isabella, Clare, Anne and Nikita. You have all been so wonderful in getting us through.
Larni is still with us today and we lean on her so much and cannot thank her enough.
I also would like to mention how supportive my older 2 children have been throughout these times. I know that it must have taken a toll on them, as it has been very difficult at times for my husband and I. I want to thank Amber and Jesse for being wonderful siblings to Kasey and for helping out where they can. They really are proud of him and would do anything for him. I am proud to say that they are very conscious about raising the awareness of autism to others. They are willing to promote autism within their school and have even made speeches in relation to it. We are fortunate to have 3 great kids.
I hope that other siblings can take something from what Jesse has written and know that they are not alone, as I know it is hard on them too. – Adelle Gordon
