I am honored to have my Twitter buddy @OMum22 as our guest for the Growing up with Autism series today. Also known as Deanne, she’s been a great encouragement to me. Join in her celebration today…
When Jenny asked me if I would like to write something about the achievements one or both of my boys had made lately, I jumped at the chance. Then I realized that unless she wanted me to write something the length of War and Peace, I’d have to do some winnowing! Both Oliver and Owen have been making such huge strides lately that I agonized for a while over what to write about – so many good stories, so many things that make me both smile and feel so proud.
I decided to focus on Owen because Oliver’s gains are easy to see, while Owen’s are more subtle but in many ways, much more profound. Please indulge me for a moment as I tell you a little about Owen.
In a celtic context, Owen means ‘young warrior’ which many see as ironic because my Owen has always been a very calm, easy-going and mellow boy. However, he has also had to be a fighter right from birth. The boys were born very prematurely at 29 weeks. Owen was exactly a kilogram when he was born but he dropped a couple of hundred grams afterwards. He had problems tolerating food, had a heart murmur and needed help to breathe for the first 8 weeks of his life. The picture on the left is Owen, 9 weeks after he was born on the day I brought him home from the NICU.
Owen has always suffered from hypotonia ( low muscle tone), and in consequence he needed occupational therapy in order to hold up his head, crawl, and walk. He is non-verbal and has been in speech therapy for years. Prior to using a picture exchange communication system (PECS), Owen would often indulge in self-injurious behaviour because he was so frustrated at not being able to communicate. When he first started therapy he wouldn’t respond to his name, the only thing he was interested in were books. He would not use gestures or imitate. Once he was engaged, his joint attention and eyecontactwere good – the challenge was getting him engaged. Despite all of the difficulties he’s faced however, throughout his entire life he has been a beautiful person~ affectionate, sweet, and with a darling smile.
There are two recent advances Owen has made that I want to share with you because, whilst they may appear to be small, they have had a huge impact on both him and the life we share together. Owen is extremely sensitive to sensory input. In terms of sensory seeking behaviour, his primary focus has always been oral. A lot of time has been spent redirecting his chewing behaviour to chew tubes (and finding the right ‘chewie’ was a project in itself!).
This presented a huge problem when Owen was prescribed glasses. The boys’ prematurity resulted in both of them being extremely far-sighted which caused both to have a ‘lazy eye’. Oliver was prescribed glasses first and whilst it was a challenge, it didn’t take too long to convince him to wear them. Owen, however, was another story. As you can see from the two pictures taken on his third birthday, whether or not he would wear them was still very much a hit or miss affair.
It’s been just over two years and he’s gone through many different pairs of glasses. In addition to the chewing, Owen has virtually no bridge on his tiny nose, so it’s hard to find a pair that fits both properly and comfortably. Between them falling off, him taking them off, or chewing them and then throwing them aside, they would accumulate lots of scratches, break or simply just get lost.
What do you get when you mix poorly-fitting glasses with a little boy who needs to chew and doesn’t understand verbal input? A recipe for disaster, and an expensive recipe at that! It’s been 2.5 years and during that time I have sometimes despaired, thinking maybe he would never actually wear glasses. Then a happy confluence of events resulted in the seemingly impossible occurring – his fine motor has improved so he can put his glasses on himself, he’s big enough that his glasses fit him properly with no headbands or other gadgets required, he needs less oral input and best of all – his capacity to understand receptive verbal language has improved dramatically. When I say dramatic – I can now say his name and he will turn to me and smile his adorable grin. If I tell him “glasses on” he will pick up his glasses and put them on his face. He can finally see properly, and I think he likes it!
Having him respond to his name is such a blessing – and combined with another recent development has led to Owen and I sharing some very happy moments. In the last month he has learned to imitate. His primary therapist started working with objects first but he picked up the concept so quickly that they’ve started teaching him to imitate actions as well. Now I can speak to him and ask him to ‘copy me’ or ‘do this’ and he can copy actions like clapping his hands, stamping his feet and drumming his hands on the table. For a child with receptive language and motor challenges this is a really big accomplishment!
It also means that we can finally do something together that he’s passively enjoyed his entire life. Owen has always loved it when I sing to him (proof of the love of a child for a mother considering my voice!). It is the best way of gaining his attention, making him smile, redirecting him when anxious, and soothing him if he’s unhappy. He loves songs with actions but until now he has simply watched me and smiled or giggled. Now we can sing his favourite songs and do some of the actions together! It’s a huge blessing, for both of us I believe. Here’s Owen as he and I do ‘If you’re happy and you know it…..’ Believe me, I was clapping my hands furiously. Nothing makes me happier than seeing Owen happy!
Thank you for sharing these great accomplishments, Deanne! I had a big grin myself. You should see if you can get your hands a book I love, “If You’re Happy & You Know It, Jungle Version.” I bet Owen might start imitating some animals with you!
Deanne is a single mother of 5 year-old twin boys who are both on the autism spectrum. She has two history degrees, but works as a tax consultant to pay the bills. She works part-time in order to ensure that she has sufficient time for all of the boys’ therapy appointments. She’s passionate about ensuring her children are given the opportunity to realize their full potential. Her interests include reading, history, running and being an active member of the special needs community. You can find her blog at www.smallbutkindamighty.wordpress.com