This weekend we have a therapist coming to Canberra who is with us Friday afternoon, and all day Saturday and Sunday. Moving into a new area of autism therapy. Made this decision as Matt is definately testing boundaries and is now at a point of awareness that he cannot remain the ‘leader’ to further progress. A big change from the little boy who was going to have hearing aids as he was unresponsive and did not interact with us at all … the ‘good boy’ in the corner that didn’t need or want anyone.
 
We have just added a wonderfully experienced speech therapist to our team. She comes from Sydney and works with both boys at our home. Nicholas is behind in all areas of language development and will be receiving help with social language. The therapist has said Matt’s use of jargon langauge is really promising and with afew simple added steps, the jargon will become full sentences. Already he is making progress and said “help push me please” when he was on our swing. This was said with 100% appropriate eye contact! Every day he is adding new words that are becoming part of his every day vocabulary. He has been greeting Chris of a night “hello Dad” and now he is self correcting himself saying “hello dad hello daddy” with emphasis on the “DaddY”. He is copying Nicholas who calls Chris “Daddy”.
 
Being Aspergers, Nicholas has difficulty understanding emotions and theory of mind. Since doing the emotion regulation work he is a much calmer boy and alot of his anxieties have decreased. I think the greatest benefit to Nicholas has been labelling of emotions and understanding the physical response to emotion (imagine how your body feels when angry and how scary if you can’t recognise what is happening to you or how long it will last). His teacher sent me a letter saying Nicholas is “a kind hearted and as he is learning how to be a good friend, the other children are actively seeking his time”. He still gets upset with change but is more accepting than he has been previously. Meltdowns were happening several times a day but now are every other week.

Nicholas was very excited at Christmas but we could not call it Christmas Day as he had no concept of when it was happening. So it is now “Thursday” until next year when it will become another day of the week! Abit like school starting again on the 5th Feb. He is much happier and excitedly tells people “I go back to school on my birthday”. So now he has 2 things to look forward to!

Matt found Christmas decorations too visually busy so it took weeks to get the decorations up and now weeks to get them back down … yes, the tree is still up! and it is now nearing the end of January.

This was a big step as outings to unfamiliar places hasn’t always been possible and the amount of invitations we’ve had to refuse could become a very effective doorstop J

As a mother, my hope for the future is that I succeed in my role as mother, wife and caregiver and that maybe one day I will see my children play together, that Matthew will link the word Mum as being me, that Matt will see me as complete person rather than a hand that is a useful tool, that my boys will find a sense of order and acceptance in the world and be recognized for what they CAN do rather than what they CAN’T do, that Autism will be thought of as “another way of thinking” than as a disability.

Matthew has a beautiful laid back nature of which I boast that he is my “soothing balm” in eventful and sometimes stressful days. Matt is still primarily non verba although we have heard him say many words. As Matthew is getting older his levels of frustration are increasing as he cannot verbalise his needs and is having  difficulty processing sensory input from the wider world.

At school Nicholas likes to play host to the other children at morning tea time and helps unwrap food ensures everyone has drink bottles. His tremendous eye for detail makes picture mazes and the Where’s Wally series of books favourite activities that are completed without difficulty. Nicholas is either the consummate host or goes into a head banging hysterical meltdown. Without an internal gauge to regulate his emotions he relies heavily on order, structure and routine to cope with everyday life.

Does any of this make sense to you? What I do know, I love my little boys so very much.

 I was reduced to tears and it wasn’t until 3pm (when Playschool came on) that order was restored. Play School coming on TV reset the routine for them and the rest of the day went well. The psychologist gave me a visual to use when things change so hopefully it will help in the future.

Really feeling abit powerless with Nick. There’s been the trouble at school but I really feel that I’ve let him down. So much time and focus on Matt that we’ve been trying to MANAGE his behavious rather than finding solutions to help him. It upsets me that he is having trouble with friends and we still have not been able to get any testings completed. Hard to know what you are dealing with when nothing has been done 100%. So I find myself hoping that he will get a diagnosis of some sort so extra help for next year will be granted. And then guilty that I’m thinking like that. Not really what normal mothers hope for their child is it? But how on earth will he cope with school in a class with 20 kids and 1 teacher? Not very well and his spirit is going to be crushed.

So the path to a diagnosis. That brings up alot of emotion. Glad that my opinion of Nick has been validated by the psychologist who is now thinking (maybe) along that line. Disappointed that it has taken so long to get to this point of agreeance. Angry that the system has changed and we don’t have any clear idea of when he can have the autism assessment (and believe me, I have pushed and pushed and pushed). Furious that if we get a diagnosis now that our choices of school will be limited as places are being allocated and we have missed the Dept Education’s deadlines.

On the weekend I bought a trick toy and said “Nick would you like some crisps?” and passed him the joke container which when opened a snake jumps out. Nick could not see the joke and started mithering for the non existent crisps. To him it is simple, a crisps container should have crisps in it.

He has such wonderful caring skills and is so intuitive. In the bath the boys were playing a game where Matt would say “ready set GO!” and Nick would slide down the side of the bath creating a big splash. Nick turned to me really excited and said “Matt looked at me!”. To notice his brother looked at him meant Nick had noticed his brother did not make eye contact. One of those moments when your heart leaps as a mother!

We now have several helpers added to our team including a pre-school teacher and a uni student in her final year of a teaching degree with a special interest in autism. Therapy ACT visit fortnightly and Matt’s private therapist is on weekly appointments. We will start school at Cranleigh next week.

Speech is now coming at a rapid pace and is reaching the point where it is difficult to write it all down. In a 30 min session Matt said snip snip, house, bed, doll, woof woof, miaow, don’t push, no don’t go away (4 words together!), bye see ya, oo oo monkey, love you, flower, roll, poke and an elephant noise.

 Six months ago Matt’s play was to line up and sort his toys. He would not tolerate interference by other people and play was solitary. Today he does not line up toys (except as a security action when presented with something new) and is playing with several toys together. For example, two sets of blocks are made into a train and the passengers are his ELC Happyland and Fisher Price Little People figurines. Matt made a step for the passengers to climb on board and he pushes it around the house letting the people get on and off. He has the people talking in a conversational babble using different tones of voice for different figurines.

Craft is his favourite activity and he can now use scissors, draw faces (complete with ears and eyebrows), circles and squares. He can now label facial features and his feet.

Matt is no longer pouring drinks on the carpet and his tantrums have decreased and rarely throws things … not nearly as destructive! His need to pour has been replaced with activities that give him the same output but in a constructive way for example, fake snow, slime, sand pit. Instead of throwing and banging we have replaced it with dot makers for craft, a tennis ball with a stick attached to use as a banging paintbrush and given him free access to drums and a box of musical instruments.

Hygiene problems have evened out thanks largely to the television show “In the Night Garden” on the ABC. Matt mimics the charactors and is now brushing his teeth, lets me brush and wash his hair and wipe his face all without causing any upset! A far cry from the days when I would have a hysterically upset child everytime he had to clean his teeth! Now I just need the ABC to do a show on toilet training and he will be set!

 A quick word to the shopkeeper and I no longer felt pressured that Matt was being perceived as “naughty” and he continued his game until he wanted to move on. This is the lighter side to the repetitive and restricted behaviours of autism.

 We could have left the shop with Matt in tears but because of the empathy of a stranger Matt was able to continue his game and all ended well.