Aspergers, Isolation and Support.

Is Aspergers isolating for families? I hear daily from people with children or relatives who have Aspergers. It seems that for many, the condition isolates the majority of family members, even extended ones. This has piqued my curiosity and I smell some research coming on.

One thing I have really noticed is the frequently desperate voice of people caring for Aspergers kids. Desperate for information and support, the carers seek comfort in chatting with others who understand the dynamics of a home where Aspergers social skills take dominance.

There are plenty of academic, text and parenting books around about Aspergers but I have not found a single book containing the multiple voices of non-aspergers family members affected by the meltdowns and impaired social skills of the person with Aspergers: a support group book if you like.

How do you cope with friends who label your Aspergers family member as naughty, rude or lazy? What is it like in your family when the meltdowns last for hours? How do you recover from the obsessions, anxiety or isolation when your Aspergers loved one refuses to leave the house? These are questions I receive from readers who are just beginning the Aspergers paved road leading toward having a different life.

At times, I have used creative and formal writing as my sanity sanctuary (Parenting a child with Asperger's Syndrome and Living with Autism). At other times I ring my partner and vent on him (he doesn’t want to come home then!!). I research, read and seek out different strategies of coping. I reframe my child’s behaviour and accept that this is our family life: different and focused on preparing our son for a life where he will always be viewed as a little strange. The best thing has been the contacts with others throughout the world who are going through similar situations as us. Hearing of their life, their difficulties, their ways of coping and adjusting has given me strength. I owe an enormous amount of gratitude to Elisheva at Ragamuffin Studies: she came into my blogosphere life on a day where I wondered if I’d make it through without going stark raving mad. Talking with another adult who instantly recognised the challenges of Aspergers parenting and home schooling has cemented a friendship that I hope will eventuate in meeting face to face.

I value and appreciate those people that contact and tell me of their journeys. We have rich material that can help each other and I would love to see someone collect our data and turn it into a support handbook for other parents of children with Aspergers.

Is Asperegrs isolating for your family? Would reading a book about the experiences of others be helpful?

Nice shoes, Boy.

The business of asperger’s and anxiety is alive and well in our home today. Boy went cable skiing with stepfather yesterday and had a great time. However, as always seems to occur, he gets so tired from the over stimulation that he melts down like an ice cube beside a barbeque.

House inspection, creating a website, playing on-line games, obsessions about “what’s for dinner” (from breakfast until now at 3pm mind you) and a late afternoon meeting with his youth worker has been too much for him to process.

In preparation for his youth work hours, I ironed his favourite shirt. That was the trigger he needed. I should have known he wanted to wear the red shirt that was too small for him. Who says it’s too small? Who says it needs ironing? Who says you’re the boss? Oh dear! He’s gone off happily with his amazingly attentive youth worker and I’m left shaking in shock.

I take stock in knowing that families do survive Asperger’s. I enjoy knowing that we have recreated a life where we no longer sweat the small (or big) stuff. I take comfort in knowing that my son has a gifted and brilliant mind. It is my job as his parent to help him navigate this world that demands certain behaviours and social standards for those from the wrong planet.

He’s right you know. Who cares about his shirt? He left the house wearing my shoes!!!!!!

Meltdown Measure

Boy had a meltdown last night. He has been so busy of late, that it finally took its toll and he reached over stimulation point. The meltdown took a shorter form though (thank goodness). He yelled at me, displayed actions of impatience and immediacy and then settled. From his point, the meltdown was over in 10 minutes.

I went to bed with his yelling in my ears. I was hurt and thinking selfish thoughts of my own (“how could you treat me like that after everything I do for you”). I had allowed myself to become seduced by the recent weeks of high functioning and coping behaviour. I forgot that he is a child with Asperger’s, special needs, and that he cannot be forced to act in a way that we want, when we want.

I reflected on my somewhat co-dependent thoughts of, “poor me”, and have this morning accepted that the only reason I knew that last night was a meltdown was because his behaviour and coping has been so very, very acceptable of late. You know, it's the reality of the maxim: You cannot see the light unless there's a dark to hang it in. With this in mind, I need to celebrate the mini meltdown as a way of measuring how far he has come. One little meltdown isn’t go to send him back to the days when we had screaming for four hours solid (or on one occasion, eight hours until he fell asleep exhausted). One little meltdown is not going to send me scurrying back to the privacy of my pillow so that I can wash it with my tears.

That one little meltdown is this morning going to create a discussion on how far he’s come with learning and practicing social skills. That one little meltdown reminder is resulting in a privileged visit to a place Boy has been longing to go to for ages: Cable Skiing.

That one little meltdown has reminded me that I forgot to reward Boy for his excellent anger management and social control of late. If he’s trying hard, so too must I.

I went back and read a creative plea of help I wrote some time ago, Living with Autism. How well I remember my intense pain the day I wrote that. How far I have come too. Perhaps we require a double celebration: Cable Skiing for Boy and a big fat chocolate for me!

Photo is courtesy of dkg at sxc photo exchange.

Respite from Aspergers

Respite from Aspergers has finally come our way. We have been offered four hours youth worker time, per week, from The Early Intervention Service.

The youth worker will take boy on enjoyable social activities and weave social skill training and anger management into conversations.

Boy has nominated fishing and computer games as activities he would like to do with the Youth Worker. The Youth Worker is a youngish male Social Work student who has a rich life history of experience and an interest in the Autism Spectrum Disorders. He presents as a bloke's bloke and Boy and he should get along just fine.

I was so relieved to get the four hours that I could have just cried. Boy is currently refusing to leave the house and I am getting nothing achieved. The hours will start mid January and we intend to build it into the home school curricula. The day he spends with the Youth Worker will be his home school activities for that day.

In addition to the hours of Youth Work respite offered to us, Boy has also been invited to attend a Summer Camp, offered over 3 days spread across three weeks. The first day will be Taipan players coaching the kids in sport activities and teamwork, second day is circus performers teaching the kids circus tricks and the final day is a day of games and activities on our beautiful esplanade, culminating with a BBQ.

The interviewing worker also provided us information on another respite service that we had not heard of. St John’s Community Care offers Respite through Recreation. The Respite is four hours duration, every second Saturday and attendees are involved in choosing the recreation activities. I’ll be following this one up too!

I am so excited. Boy finally gets to do some fun stuff with other people and I get a break.

How do other parents of children with Aspergers organise breaks for themselves?

(Photo is Boy feeding a Swamp Wallaby.)

Pinochet, Britney and Muhammad Ali: Pom Poms on Tender Hooks

Pom Poms are so therapeutic and educational. Boy wanted to make some little Pom Pom’s as Christmas decorations but he couldn’t remember how to make them. It ended up being a cool learning exercise in art and craft and general knowledge for the two of us to do.

Boy chose his size of circle to make the cardboard Pom Pom frame. Although we were not doing a home schooling exercise, watching him measure plates, cups and bottles (anything with a circle he could draw around) against each other as he found his perfect size was just amazing.

The second step was to find a somewhat smaller circle to make the inside circle for the cardboard frame. The circle hunt repeated itself and my kitchen benches again supported an assortment of anything with a circle base on it. This second circle-finding mission reinforced his first rules of highly scientific circle measurement of holding one kitchen piece up against another. Scientific or not, it worked well.

After carefully tracing his circles onto an empty cereal box, he then cut them out and sought out the wool. He knew exactly what colours he wanted (how Aspergers is that!) and he told me a long story about why a recent home school worksheet we did on the colour blue was dumb, stupid, and damaging to kids. There would be no blue in his Pom Pom, his Pom Poms would be like Muhammad Ali, a yellow and black bee (can you guess who the latest obsession is?). Oh dear: no yellow wool so he went for his favorite colour, green, and told me how to blend blue and yellow to get green.

So, we sat, threaded, talked, laughed and had a wonderful time exchanging tidbits of general information. Boy now knows a little of the history of Chile under the Pinochet regime, about Britney Spears break up and where the saying on "Tender Hooks" (tenter hooks) comes from.

I LOVE the ease of using Natural Learning elements for home schooling. Oh yes, the Pom Poms are pretty cool too.

Christmas paper making.

Colour, art appreciation and Christmas papermaking was the agenda for today’s home school. Although boy was supposed to attend school, he refused. Agreeing to do two hours of schoolwork, we managed to get into an intense argument over what the terms of agreement were.

I put my foot down big time and informed boy that the consequence for non-schoolwork compliance would be the loss of attending Laser Tag on the weekend. He complied.

Partner took him to work this morning to show him how people are paid – pay roll day. Boy even spotted a mistake prior to pay roll’s virtual fly to the bank. Excited he was and sang his own praises all afternoon. Partner was also grateful that Boy spotted the mistake.

After completing a work sheet on the colour blue, Boy made some Christmas paper from plain A4 photocopy paper. We are giving friends and family copies of my book, Bitss of Caramel Marmalade on Toast, and a single piece of A4 paper wraps the book with no paper waste. The wrapping paper is beautiful, boy had a great time and we were able to build some quality talk moments into the activity. Our talk centred around colours and art interpretation. How educational!

The winning trick for turning what started as a disastrous day, into a successful day, was to present the activities to Boy as though they were non-school related. This is my lesson to learn. I get so upset when he will not complete his set schoolwork tasks that I make the situation worse. I need to wrap my mouth with Christmas paper and remember that my words are a gift, supposed to bring pleasure, rather than being an extension of an institution that sets his Aspergers idiosyncrasies on a firecracker path.

I think his paper turned out well (pictured). What do you think?

Aspergers Tick by Pediatrician

We attended our long awaited Pediatrician appointment today. After talking to me and reading all the other reports, the Doctor agreed that boy child is indeed Aspergers. The Doctor did qualify though that on initial meeting he would not have classified child as belonging on the Autism Spectrum of Disorders.

I guess that is part of the confusion with Aspergers: the children present so wonderfully in some situations. Boy is fantastic in very small groups and gets on extremely well with adults. On some days, he is the perfect child, on others he is like Heathcliff from Wuthering Heights.

Even though today is a home school day (we were going to finish off Eragon) I have opted to not push boy to do any school work related tasks. The Doctor made Boy do some spelling, sums and drawing of shapes. Boy is cluey – he knew that the Doctor was assessing his capability. This usually triggers a melt down when Boy thinks that others think he is dumb. There was no melt down this morning and nor do I want one this afternoon.

Boy is now happily playing World of War Craft and exceeding in upward level movement. If only boy could refocus his Asperger’s obsessive co-morbid game state to vacuuming the floor for me!

I am so tired after the two hour Doctor’s assessment this morning that I could go to bed now (3pm) and sleep until tomorrow morning. But…because I am home schooling two days per week, I have fully booked myself for the next three days. That means having clients in my home, and a need for a clean environment.

Bugger! There is just no rest for the wicked; or for the mother of a child with Aspergers.

You know somedays I feel so alone and tired, just like it is only me and the never ending ocean of Aspergers. Other days I am so positive and on top of everything. Am I alone in feeling this fatigue or do other parents of children with Aspergers also feel it?

A Home School Dragon

Boy child produced the most fantastic clay dragon. That’s it pictured. At the same time as doing a dragon project at school, we are reading Eragon, as a Monday and Friday home school activity around Dragons. He loves the book and talks, talks, talks about it. Somebody gave him a Dragon book for his birthday recently and Dragons are the order of the day.

We bought some air-dry clay and he molded a dragon in a sleeping position. I had some koala paws left over from a stuffed animal project I was involved in last year (the Teddy Bear Project) and we used them as dragon claws. I also had one set of bear eyes that we used for dragon eyes. Boy is not happy with them, thinks they are too big, but he agreed to use them nonetheless.

It was a great learning and home school activity. As he molded and designed, he talked to me about all manner of things. We discussed home schooling, bullying, his Dad, and how boy is going to miss out on a trip to Japan because he’ll be home schooled next year.

I so wished that I had known that the author of Eragon (Christopher Paolini) was home schooled (see Christopher Paolini and Eragon: A Homeschool Success Story). While searching for links for this blog, I fell across the information. Excitedly, I told husband and boy. Boy displayed his usual Aspergers flat affect and husband teased me for being so excited over a dragon. Philistines the pair of them!!

I asked boy if he would take a photo of his dragon to illustrate this blog – yet again, another teachable moment presented itself. He used the camera with ease and told me he now wants to learn how to make a movie (yipes! I’ll have to research that one first).

So, from one dragon book reading, we have covered English, Languages Other than English, Studies of Science and Environment, Arts and Technology. Best of all: we have had no Aspergers meltdowns or refusals to partake in learning.

I love Dragons and I love home school.

Laser Tag Teamwork

Laser Tag is fun and educational for our child with Aspergers. Computer focused on games like World of War Craft, our son understands the strategy of winning with the minimum amount of social skill needed. Laser Tag offers him an outdoor alternative: he gets to play a game of strategy, does not have to socialize if he doesn’t want to BUT does need to participate with his team to reach their goal of staying alive. Laser Tag also offers a degree of addition, subtraction and problem solving with working out rounds of ammunition, numbers of lives available and time available to complete a team strategy.

The major benefit to our son is clearly the teamwork. He has to stay engaged with other team members (without talking to them), watch their moves and watch their back for them. They in turn watch him and together the team advances toward victory.

A game of war? Yes. Violent in concept? Yes. More violent than the computer games he plays? No. Laser Tag works on people helping people and teams mixing during break times to ensure everyone are safe, together and debriefed from the game element. It is clear that Laser Tag is a game. Real life is real and violence intolerable.

Violence is something I work against professionally and I have managed to stay away from taking boy to Laser Tag because of my fear of finding the game unsuitable and therefore spoil his love of playing. Today he really wanted me to come and watch him and step father, so, I attended for the first time. I LOVE IT! My son was so happy. His strategic mind worked overtime. He was thinking about other people’s moves. He empathized when teammates were out and he took his losses with good humor.

He exercised without having a melt down. He played over a four-acre area of thick scrub. He ran, he crouched, he crawled, and he hid. He had a ball. He was as social as kids with Aspergers can be and he had no one telling him he was a psycho. In play, his frustrated aggression was acceptable, warranted and condoned. He belonged. How wonderful for his self-esteem.

Laser Tag activities will definitely become part of our home school curricula. Physical Education and Math eat your heart out! Laser Tag was the best damn Math lesson I have ever had and the exercise was more fun than jogging around the same old block, seeing the same old sights three times a week.

Laser Tag – sign us up for membership. We are going to play as a family team.

Home School Decision Delivered.

Boy child gladly accepted full time home schooling. We were disappointed at his lack of animation (how Aspergers is that!) but he assured us he was excited. He asked the right questions: how many hours, what do I do, can I see my friends still, and can I do stuff that I like? He understood the rules (well, for today) and says that he understands that it is okay to tell people about home schooling. Until now, he has been paranoid about people not knowing that he home schools two days per week.

We are going to set up our detached Granny Flat as the home school. It is fully contained and is currently used as his break away spot. He plays his PS2 in there in the afternoons and apart from that, the Granny Flat hardly gets used. It will make a perfect learning space.

Excursions and natural learning were of great interest to him, as were making volcanoes on the beach and attending Art and Lapidary classes. And me….I have a great weight lifted off my shoulders. The decision made, discussed and delivered. Our Aspergers special son can only now thrive in an environment that caters to his needs.

My career, well, I do not have Aspergers and I can and will cope with change.

Anxiety or Aspergers?

Anxiety has a strong hold on boy child this morning. It is like a crocodile in its attack, it grabs him frequently and I try many different creative strategies to keep it at bay. The anxiety appears to make the aspergic tendencies worse.

To prevent a melt down, we agreed that if he stays home today, he will have to attend school tomorrow on what would normally be his home school day. He has not refused to go to school today but he is convinced that he is sick in the stomach and that he will only have to come home today anyway. Fine, I’m without a car until 2.30pm so if school calls I cannot go to get him.

In the interests of not sweating the small stuff, we are all comfortable with the home day today. He had an anxiety provoking discussion with his older brother and myself last night about his other home (I’m divorced from his father). Although he appeared to cope well with the discussion, the free-floating anxiety attaches itself to school and he becomes paranoid about, well, anything really.

Boy just cannot cope with change, no matter how small or “normal” the change is. In addition to last night’s discussion, his teacher was away yesterday. Add to that that we told him that stepfather would have to pick him up early so that I could have the car in time to get to my 3pm appointment. Too many changes, too many unknowns for him.

It is so very hard trying to earn a living, maintain my career and do what’s best for my child with Aspergers. I am now at the stage of wishing the New Year in so that we can establish our new routine and learn how to cope on reduced income with boy at home all the time.

So… he’s currently playing the PS2 and I’m a nervous wreck waiting for the paranoia and yelling to begin. The fights do my head in and I then have difficulty staying focused on my work.

Am I being selfish? Should I just cut my losses now and cancel all work tasks immediately? How do you other parents manage Aspergers and work?

Here's an article I wrote after a particularly bad day: Living with Autism. I re read it, often, to remind me of our forward movement and that there is always light at the end of the anxiety and meltdown blackouts. The article is the raw me - honest, hurt and fiercely protective of my child with Aspergers.

When should we tell of our home schooling decision?

Boy child does not yet know that we intend to do full time home schooling next year. We currently have an arrangement with his school where he is home schooled on Mondays and Fridays and attends at his enrolled school on Tuesday, Wednesday and Thursday. He often flatly refuses to attend school during his three-day week and nothing, NOTHING, will change his mind. So, he gets to stay home. I cancel my clients for the day and sit with him while he completes two work sheets or works on a project.

Although the school has been supportive, encouraging and accommodating, the physical attendance in a classroom is not working for our child. School produces a high anxiety level in him and he melts down way too quick. In the class and play ground, he often refuses to participate. He yells at people, becomes obsessive with his mindset of the day and is grossly unhappy with doing his schoolwork. The stress for him, for his teacher, peers, and for us, is just not worth it.

Although I have discussed our plan with the school, boy child knows nothing of it yet. My husband and I cannot agree on the best time to tell him. My husband wants to wait until after the New Year. I want to tell him now. Husband’s reasons are fear based: if we tell him now, he may refuse to go back to the school at all and there’s only three weeks left until end of term. My reasons are Aspergers focused: he does not cope with change so needs preparation and he needs to be able to say goodbye to his mates but still know they will remain his mates.

It is such a difficult decision about the best time to tell him. We find ourselves catching moments of whispered conversation lest boy child cottons onto something afoot. I am stifled in my telephone conversations when attempting to seek information and arrange resources for next year. It seems that every time I sneak the phone outside to make a call, boy child arrives beside me.

My policy has always been, “no secrets,” and I’m feeling uncomfortable holding knowledge that he has no idea of, yet directly affects him. When do you think we should tell him?

Educating our Child with Aspergers.

Are we doing the right thing in considering home schooling? Our son has Aspergers, struggles in the classroom and has more days at home than at traditional school. We greatly value education AND our son. How do we combine our two core values, stay sane, earn an income and produce a child who can function in a world that views him as different?We have previously considered home schooling but have quickly dismissed it as unworkable for us. As our son's anxieties and difficulties with traditional classroom learning have increased, our views on home schooling being unworkable have decreased.


Armed with a plethora of knowledge about Aspergers and Home Schooling, our decision is that he will be home schooled from next year. I will school him in the mornings and work from home in the afternoons. We will use a combination of core subjects and natural learning principles with a rich task focus on emotional resilience and social coping.


I intend to use this blog as a home school diary of what we are learning and doing, as a way to share what is working for us and as a forum for talking with other parents who are home schooling children with Aspergers. My reasons may be cathartic and selfish but I am concerned that so many parents of children with Aspergers complain of isolation and a lack of support. I want to indent upon that isolation; to make the world an easier and more supportive place for all of us.


I am happy to provide lesson plan information about Australia (this linked one, I guest blogged to an American home schooling channel) if your home schooled children are interested. If you are of a like mind, I would love to hear from you.

Life with a child who has Aspergers is only hard if we make it hard. We are learning to under whelm ourselves and not to sweat the small stuff. This change in attitude has made life easier for our son and certainly, better for us too.

I look forward to sharing with you.