Day 30! Autism Awareness month concludes … but the journey continues …

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Day 30. Autism Awareness month concludes … but the journey continues …

I went up to the school today to check in with the teachers about how James is travelling. Instead, I ended up having a conversation with the Learning Support Teacher about Tom. He is really struggling with ADHD like behaviour as well. She is concerned about his ability to settle and learn due to his inattention and hyperactivity.

I then caught up with James’ teacher who is the most beautiful girl. She reports that he is really barely able to remain in his seat now and is struggling to attend. On the upside though, she says he is noticeably so much happier, more interactive and much more social since he stopped his previous medication. He has expressed his anxiety once or twice to her over the past week but after a chat he’s been able to settle and use his strategies to self-soothe. This is a great sign.

It has been nice having “Big Jimmy” with me over the past days for many reasons but at this point in my journey, it’s been great having another set of eyes to observe the boys whilst we do our usual day to day things. As we left school today, Tom ran out in the rain and was running aimlessly around and around, completely oblivious of my requests for him to return inside. He won’t walk with me, he’s always running. He constantly talks to himself and is extremely loud with random vocalisations. James presents more like he’s in “fast forward” with his speech, his behaviour and his actions. It makes them both quite hard to manage as they find it challenging to focus in as you speak, they are highly impulsive and their working memory is poor.

A number of children with Autism also have clinical ADHD however a number of children with Autism have ADHD like traits – meaning they have traits of ADHD but they don’t have clinical ADHD. In the past, clinicians have been unable to diagnose ADHD as a comorbid condition with Autism however this is about to change with the release of the fifth edition of the Diagnostic Statistical Manual of Mental Disorders in May this year.

From –
“Attention deficit-hyperactivity disorder (ADHD) also known as hyperkinetic disorder (HKD) is a mental disorder[1] or neurobehavioral disorder[2] characterized by either significant difficulties of inattention or hyperactivity and impulsiveness or a combination of the two. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR), symptoms emerge before seven years of age.[3] There are three subtypes of the disorder which consist of it being predominantly inattentive (ADHD-PI or ADHD-I), predominantly hyperactive-impulsive (ADHD-HI or ADHD-H), or the two combined (ADHD-C). Often people refer to ADHD-PI as “attention deficit disorder” (ADD), however, the latter has not been officially accepted since the 1994 revision of the DSM. ADHD impacts school-aged children and results in restlessness, acting impulsively, and lack of focus which impairs their ability to learn properly.”

Given all this, I’m relieved to have an appointment with the Psychiatrist in the morning. I’m thinking at this stage that we will have to look at medicating both boys for ADHD like behaviour and I guess we just follow our noses from there. I’m hoping this will help both boys with their general behaviour, social skills, impulsivity and attention. We shall see …

Today is the final day of Autism Awareness month however I’m keen to continue blogging … maybe not every day … but as the need arises … or as the story needs further telling. Thanks so much to those of you who have been reading and responding to my posts, and to those who have forwarded my posts on to others. I think that raising an awareness of this condition and the impact this condition has on the individual, their families and their communities, will go a long way towards fostering an acceptance globally of Autism and diversity generally.

We are all in this together – raising children, being in community, living and loving. Thanks for sharing the journey with me. xxx

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Day 29. Autism Awareness month … one day to go!

Day 29.  Autism Awareness month ... one day to go!

Day 29. Autism Awareness month … one day to go!

My brother James is having a few days with us this week. He’s staying with his family at Mum and Dad’s but he’s having the days with me. The boys were very excited to have “Big Jimmy” (who is incidentally not big at all despite his 6 foot 4 stature – but the descriptor sets him apart from my own “Little Jimmy”)!! We have had such a lovely day together.

We started the day in the assembly hall at school with the boys. We arrived just as the bell went so most of the kids were seated in the hall already. This is about the only way my James can tolerate the hall. Tom was concerned because he wasn’t sitting with his class and struggled to cope sitting with us. His anxiety is of concern at times. He was happy though once I took him over to his teacher at the conclusion of assembly.

My brother James and I then went to have a chat with the Learning Support Teacher who is a lovely, practical and straight shooting woman – my kind of gal! It was decided that we’ll leave James off medication for at least this week and that she would do regular observations of him during this time. We are trying to work out whether it is ADHD like behaviour or anxiety that drives his ‘high as a kite’ behaviour. It will be really useful for me and for James’ doctor to have this feedback from them. As ever, I am so appreciative of the school’s efforts to support James and us as a family. They really are wonderful!

“Big Jimmy” and I then ventured out together chatting all the while. We had a big chat about the expenses associated with raising children with Autism. There are a lot of ongoing costs for a family with a child with autism. Every time we see a speech therapist we are approximately $35 out of pocket (we have private medical insurance). Occupational Therapy is similar. Trips to the Psychiatrist have a gap cost of around $60-$80 depending on your specific doctor’s rates. Many doctors request a WISC (Weschler Intelligence Scale for Children) test which costs approximately $800, a speech language assessment which costs approximately $100 out of pocket and an Occupational Therapy review which costs about $200. It’s clear to see how the costs add up.

James’ previous medication was costing us around $300 a month as it is not covered by the PBS. Even the medications that are covered by the PBS cost around $30-$60 a month depending on the drug. Multivitamins, Omega 3s, Vitamin D, Probiotics and epsom salts are all recommended to assist with general health and well being. These probably cost our family about $200 a month.

It is a costly business but I firmly believe that all of these interventions are worth every cent that is spent on them. All this input makes an enormous difference to the long term trajectory for our children. If you add it all up though, with both boys we are probably approximately expend $400-$500 a month on autism related expenses and it was much more before we stopped James’ medication. Obviously the financial impact of this on families in huge and it is life long.

So after a lovely day together chatting about all manner of topics, “Big Jimmy” and I took the boys around to Mum and Dad’s after school so they could have a play with their cousins. My youngest sister “JoJo” also came around. I get so much joy out of watching these cousins play and seeing the obvious love between them. My boys really adore their cousins. James read books to baby Eve, Tom and James both requested cuddles with her, they happily played Duck, Duck, Goose and What’s the time Mr Wolf? with their cousins and derived so much pleasure out of it. I am so grateful that the boys have the opportunity to enjoy and love their cousins. My cousins were a huge part of my childhood and were my first real childhood mates. It’s just beautiful watching my boys with all their challenges, enjoy this as much as I did as a child.

I always feel for Tom. When he was born James was going through a really tough patch and he has had to sit back whilst we have managed meltdowns and challenging behaviour. He has had to cut short playdates, birthdays and fun family days out due to James’ outbursts. James takes up a lot of space and draws people’s attention, and Tom has had to accept this. I think he is amazing. He is a fantastic brother and he absolutely idolises James. To this day it is Tom that is best at snapping James out of a meltdown, usually through humour and antics. Tom has his own battles with anxiety yet he is always sensitive to James’ needs. I am really proud of Tom because in many, many ways his road to date has been more challenging than James’ and he has managed it with such grace for one so young.

As I put the boys to bed tonight, Tom said to me, “I love you, Mum. I really love you a lot!” and James said, “I love you lots, Mum. I love you to Granny and GrandBob’s, all the way to Woorim, then to Aunty Geddy’s and all the way back here! That’s a lot, Mum!” I love them a lot too. I love everything about the two of them, even the challenging parts. These two little boys inspire me to become a better person, a better mother and a better wife. They are two of the most remarkable little people I’ve ever met – and yes I know I’m biased – but they each have their own battles to wage and they do so bravely and with humour. I am so very proud of them both.

Day 28. Autism Awareness month is nearly over ….

Day 28.  Autism Awareness Month is nearly finished.

We are now medication free after a 2 and  a half week weaning off process.  It has certainly had it’s moments but it has been an interesting process to watch.  James commenced on medication when he was 3 years of age and he has been on a variety of medications ever since.  In the meantime he has received huge amounts of intervention.  I’ve been eager to see how well he will manage unmedicated now that he’s a bit older.  As expected, a few cracks are beginning to show.  The two key concerns are hyperactivity and anxiety.  The upsides are that he is his old, happy, flappy self and he’s clearly just feeling better and more energetic. 

 Sleep is an issue.  Sleep is an issue for many children on the Autistic Spectrum.  James is now experiencing huge amounts of anxiety in the process of going to sleep.  This is new for him.  He tells us, “I am worried about going to sleep”.  He has come out to us two or three times every evening since he’s discontinued his previous medication.  This is a concern.  We have always found that if he doesn’t sleep well his Autistic behaviours increase.  We will have to address this issue with his doctor very soon.

 Hyperactivity.  This is a really hard one because often high levels of anxiety present as hyperactive behaviour.  James is pacing a lot, talking a lot, talking to himself a lot at a great rate of speech, giggling a bit too much, and it is difficult for him to sustain his attention to listen or reciprocate in conversation.  What it look like – is that he’s constantly in fast forward mode!  My gut instincts as a mum tell me that this is ADHD like behaviour and not simply anxiety … but sometimes I doubt myself.

 Anxiety.  Anxiety is one of James’ most significant issues.  It’s extremely difficult for him to verbalise his thoughts and feelings, so it’s difficult to gauge sometimes exactly what level of stress he is enduring.  He is much better now at telling us if he’s worried about something but he can’t articulate much more than that.

So where to from here?  I’m concerned about sending him to school unmedicated tomorrow because he really was as ‘high as a kite’ this weekend.  At home you can manage this but it’s much more testing in a classroom with 30 other children.

I’m in two minds about what to do next.  On the one hand, I think we should give him something light initially to cover the anxiety.   But then on the other hand, I think we should deal with the hyperactivity because that is the behaviour that is making it difficult for him to function at present.  But even then, there’s no way to know if his anxiety drives this behaviour or if it’s purely ADHD.  Very tricky!

I have accepted that no medication probably isn’t going to be a sustainable option for James in the long term and that’s perfectly OK.  I wish however that the perfect medication could present itself and that we didn’t have to go through a process of finding the right one that might cause more distress to James.  I wish that when we found this medication, that it would continue to work for the rest of James’ life but it doesn’t work that way.  Sometimes medications cease to be effective for children.  Many drugs have a ‘poop out’ factor – meaning that over time they cease being effective.  So we are constantly reviewing and revising the medication in the search for a perfect fit.  It is a very frustrating experience and a difficult one for James.  It’s one of the many situations where I wish I could wave a magic wand!

I just love this child to pieces.  Sure he’s difficult and challenging, and we’re constantly in a cycle of one step forwards, two steps back … but he is truly such a blessing.  Both of the boys are! Tom is just a great deal more straight forward, bless his heart. 

Since I gave birth to James my wants for my boys are very simple.  I just want them to be happy and healthy – everything else follows.  Sometimes keeping your child ‘happy’ is a harder task than you ever imagined.  It’s scary, stressful and entirely heartbreaking to watch.  This is why the decision to medicate is an easy one to me.  I would not watch my child suffer needlessly and I would do whatever it took to help them to be happy and healthy.  And so the journey continues … and I’d do it all over again in a heartbeat for these two little treasures of mine.

“You know, all that really matters is that the people you love are happy and healthy.  Everything else is just sprinkles on the sundae.”  (Paul Walker)

Day 27. Autism Awareness month continues …

Today I thought I’d simply post a clip of the boys sharing with you their much adored mini-figures! There was much hilarity in the creation of this short clip – I could make the BEST out-takes clip. As you will see, James is back to his happy, flappy self. And together they are both sweet and incredibly mischievous. I adore them. Enjoy xxx