Bringing up John: Anne's story

In this the first of our 'share your story' segments on this blog, I'm delighted to welcome Anne who tells her story with honesty and wry humour. She's done it tough, but she's come through and she has raised a 'likeable' 21 year old with Asperger's Syndrome who is doing well. 

I’m Anne, aged 50 and together with my husband and two youngest sons I live in the lower Blue Mountains west of Sydney. My middle son John, who’s 21, is the one with Autism/Asperger’s. He and his younger brother Paul (20) are the only kids left at home out of my four and my husband’s three children.

On my own

My first marriage broke up just before the time of diagnosis - it is more common to be the other way around i.e. the strain of having a disabled child resulting in relationship breakdown. When I broke the news of the diagnosis to my ex-husband he just asked, “so you’ll be wanting more money, then?” I just wanted some sign that he was even slightly devastated.

It became apparent over the years he (and his parents) blamed me for John’s anti-social behaviour because I stuck him in front of a video too much (the same one, the same scene, over and over of course – the only time he seemed happy). Prior to that I remember quite clearly my ex-husband laughing at John (at age two to three) when he hit himself in the head and ran away crying (quite frequently) if frustrated. So he never had any support from his father and little from his paternal grandparents. That side of the family dismissed the diagnosis, not believing in “it”. 

John had no language but his older brother had benefitted greatly from just eight months of fairly straightforward speech therapy so I was hoping this would be all that was wrong. Perhaps I was kidding myself but I had a lot going on at the time. We had four children aged one to eight years, we had just moved to a new area, our marriage was in trouble, not to mention lingering post natal depression from after baby number four who came along just 17 months after John and all three boys seemed to have varying levels of ADD. Little did I know that the two youngest were both on the Autism Spectrum (Paul, the youngest, having Semantic Pragmatic Disorder which was hard enough on its own). And I still get depressed on and off.

Getting a diagnosis

The Speech Pathologist picked up on a problem almost immediately and recommended I take John for an assessment with a Paediatrician or child psychologist. (She didn’t mention the “A” word.) Our long-suffering pre-school helped me by having the assessment done there by an Early-Intervention (EI) teacher who then visited me at home. She was very nice and helpful, broke it to me gently (definitely the right person for the job) but I was still stunned.

That afternoon I looked at John a bit differently when I picked him up, like he was quite special. He was about three and a half by then.

We’d had to have a hearing test first (which was impossible, they just had to estimate that his hearing was probably within the normal range). Many people would have thought he was just naughty as he was ignoring me and unco-operative. Stick him in front of his favourite video and he was no trouble but giving in for the sake of peace had to be measured out I learnt. And gosh did I learn a lot: books, seminars, groups – the works. The biographies are quite inspiring. I am a great fan of Professor Tony Attwood http://www.tonyattwood.com.au/ and also dabbled in RDI http://www.rdiconnect.com/pages/Home.aspx, sorting out what was doable and what might help us.

Doctors and therapy

Luckily there were a few people on the ball. I also had some support from friends and my wonderful parents. In fact John actually responded often to Nanna and consistently to Grandpop (J was his “little mate”).

Also, I had a very good friend at church (Arthur, who I ended up marrying!) so had someone to come with me to the Paediatrician visit at the Children’s hospital. (Even though he was disinterested himself, John’s father was incensed about me taking this friend along and I believe his anger further contributed to him ignoring John permanently, his reason being that John didn’t seem to ”like” him.)

We saw the eminent Doctor Christopher Green (of “Toddler Taming” fame) who didn’t like labels himself but put John firmly on the autism spectrum. We also went to a more local Paediatrician who was very interested in testing him for Fragile X Chromosome Syndrome (his “pet” disability) but was under-resourced with up-to-date options for us.

The upshot of this was that I had some extra-harrowing months toward the end of John’s pre-school years with nowhere to go. He couldn’t go back to the special-needs preschool (too old), couldn’t go to a “special” school (not intellectually disabled enough) and couldn’t go to what the Paed recommended – a class for “language-delayed” kids (which I thought would be perfect) – because of the Autism factor!    

Several scary weeks and many phone calls later I discovered a satellite class (K-6) for Autism in a regular Penrith school. (I wish that somewhere along the way just one health worker had told me about this!)  We applied for transport as well (more hoops) and for 3 years had a nice little routine going. Paul was also receiving regular speech therapy; we were by far their best and longest-running clients.

 If I had had to go through the public health system for this it would have been even harder, but we had a good health fund and also got our money’s worth out of the education department over the years. There was a communication book sent home that the teacher wrote in almost daily. One memorable entry was her concern that John had said “damn” a few times. Ha! I was overjoyed at any or all speech!

Doing ok at school

This class was terrific, there was some integration e.g. for sport and some of the better ”regular” class kids would be imported to make up numbers for a more “regular” class experience. Teacher and Aide were great, class size was capped at 6 and toward the end of Year 2 I was told he was getting too good – he had to graduate!!!

So then a new kind of normal began for us at our local public school. John repeated Year 2 which helped a little but it was clear the teacher was facing quite a challenge. There was an integration aide for a couple of hours a day (which had to be begged for at review time every year) which dropped to a couple of hours a week in high school, which was atrocious in my opinion.

Throughout John’s school years, Paul was ill with anxiety partly due to feeling overly responsible for his brother (a lesser-known symptom of SPD is having an inappropriately “grown-up” line of chat or attitude not to mention the delayed speech and not learning from his mistakes when quite young). In High School it was different, Paul was bullied once or twice for being John’s brother but it was dealt with reasonably well.   

Teen years                                               

Ahhh, high school… Not to put anyone off but it was a whole other ball game. I got in a good couple of years of concentrated worrying before it started so at least it lowered my expectations. There was some bullying (again, dealt with) but it could have been much worse. John stayed well out of everyone’s way (mostly by going to the library).

But things were not easy. Some years earlier I had remarried and inherited three part-time step kids who didn’t exactly like me. Eight months after our wedding my Mum died from an entirely preventable misdiagnosis. Six months later Dad died of a broken heart.

My kids had a hard time, especially the older two. My daughter seemed to hate me for long periods at a stretch. Years before, my ex-husband had tried to get custody of the eldest and youngest (his favourites) when he left, dragging us through the courts but he had to drop it when he was advised he had no hope. It was a horrendous experience that eventually had the family court counsellor shaking her head and saying she felt almost too sorry for me. Also, their father was determined not to ever give me a break by taking the two younger children for “access” more than a couple of times a year. I gave up trying to interest him in John’s progress, he really didn’t want to know.

But progress he did. The school map and timetable kept him going, along with a terrific deputy principal and basically a very good school. John completed Year 12 under “Life Skills”, a more basic level of the core curriculum, even doing some regular subjects at TAFE. John had years of seeming to have no friends but he acquired at least one during high school, a young fellow a year above him who also has some social awkwardness. They have common interests – gaming and art – and there is a whole on-line community out there he can “talk” to without having to meet face-to-face!  

We've made progress                                          

When I feel negative about John’s employment prospects I try to look at how far he’s come. If anyone was to say, “well he can’t go to TAFE forever” or, “leaflet delivery isn’t a real job, he can’t do that forever,” I think, “fooey to them! The disability employment agencies can worry about that, not me. Surely my job should be getting easier,” and I think it is.

Luckily there are very few “discouragers”. So hat’s off to John. And me. I have brought up a capable and – yes – likeable young man. It was not without help. Luckily I have some “encouragers” amongst family, friends and church family.

He has already demonstrated that he can live fairly independently. (Since retirement, Arthur and I often disappear for 6 – 8 weeks at a time on caravan trips.) His younger brother occasionally reminds or asks him to do things while we are away but basically he does not need “looking after.” (Eg. “Hey John, can you make dinner for us both tomorrow night, I’m really busy with study and work this week.”)

We all like some routine, John thrives on it. So much so that he is better than most remembering to put out the bins, going for a daily walk and going to bed early. And I know there are people praying for him so I don’t have to do that on my own either.

Doing my best

When he was quite young and newly diagnosed I starting believing that God looks out for kids with disabilities just that little bit extra. And I am thankful that we are living in a relatively enlightened age where there is support and much more understanding of this condition. Even as recently as 30 years ago Autism was blamed on “refrigerator mothers”, who act coldly. But the opposite is true – we have to resist that mothering instinct and relearn how to interact with our precious child who seems like they’re from another planet. I could never hug my own child, it made him worse.

Most interventions (Speech & Occupational Therapy, EI pre-school or playgroup program) gave out… homework! It looked easy enough and kind of fun to me but rarely could I get him to do it. I couldn’t teach him anything; he did not want to be read to or played with. It was simply heartbreaking. He sat with a pool of books around him and somehow taught himself to read a bit.

Finding a niche

One wet holiday afternoon (he was about four) Mum was minding him and his younger brother while I took the older two to the pictures. She gave him her writing pad of about 40 pages and a pen. I did not witness what happened but I saw the result: first page – a very rough circle, and by the last page, a full stick figure with facial features (Ah, the patience of grandparents!). And thus began an ongoing passion for drawing.

Primary school teachers just kept up the supply of department-issued exercise books, it kept him quiet. He filled them rapidly, developing comic-style content. (Almost “Manga” or “Animé” type drawings, was he ahead of his time?!) I also supplied plenty and by the time he got fussy and started using unlined or art paper he had gone through about 300 of them.

We thought team sport was out of the question until we hit on bowling. Same place, same time each week and no need for interaction with anyone unless you occasionally chose to applaud a team-mate’s strike or spare. You only really competed with your own average so there wasn’t such a risk of failure (a huge fear).

John was seemingly about five to eight years behind in developing social sophistication and we only ran into trouble when it looked like he would have to join the adults’ league at age 16 (he was often king of the kids, age-wise) but he was permitted to continue to age 18. It was a moot point anyway as the evil Coles did not renew the bowling alley’s lease and bulldozed it to build a giant Liquorland. 

Other people's reactions

There has been so much in the media about Autism I wonder that people are still in the dark about it. Over the years I have thought most people just didn’t know what to say or do to help (they could try asking!) so end up saying something quite unhelpful. It is very hard for me as my primary love language is “words of affirmation”. I almost need a cheer squad daily (see http://www.5lovelanguages.com/ ) So showing sympathy or saying, “I don’t know how you do it,” would free me to respond, “yes well it’s very, very hard and such a struggle a lot of the time”.

John still goes to our church youth group, which I am thankful for, and travels independently by bus and train to TAFE and appointments. He can step outside his comfort zone (as long as it’s not too much) and earlier this year we both went to the U.S. to visit his sister and he attended the L.A. Comicon (Pop culture and comic book convention). Quite an experience for him!

I was always worried about the future but John often surprises me with his capabilities and insight so I’m not as scared any more.      

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