Loosening the umbricial cord

I'm sure any mother of a child on the autism spectrum has perhaps a tighter grip than she would have with a regular or typical child. It can't be helped. As soon as there is a diagnosis or even before that - when it is apparent that your child comes from a different mold - it is only natural to want to wrap your darling in the biggest wad of cotton wool that you can find.

I have been doing this for most of Amy's life. Although she wasn't diagnosed with ASD until she was three and a half, I "got" that she needed close support from her mother night and day. So I gave it to her.

Amy's elevated anxiety levels were apparent when she was just a few months old. She didn't want anyone else apart from Mum, Dad or Nana to hold her. She had to get to know people well before it was okay for them to hold her. It was never pass-the-baby with Amy.

So it was Amy and I day and night through-out her babyhood, toddlerhood and for some of her preschool years. She was socialised within antenatal coffee groups, music classes and at the local playgroup as a baby and I set up regular playdates for her at the age of eighteen months.

Yet socialising wasn't her priority. Although Amy enjoyed being out - it was the environment that interested her rather than the people in it. Often at antenatal class get-to-gethers Amy would wander off exploring the home we were in as the other kids checked each other out.

When Amy reached three years old it was apparent that her social skills weren't natural. She was a late talker and this only frustrated her in her interactions with others. This is when I started the progress of getting a diagnosis.

Amy has come a long, long way in the eighteen months she has been at Kindergarten. She was in afternoon Kindy for six months and learnt a lot there about been in a large group of children and having to share her space and toys.

When Amy turned four she started Morning Kindy and she has been blossoming ever since. She is forming new friendships at Kindy - with and without support from the Kindy teachers.

School is just around the corner for Amy - next March - and myself, special education and her new entrant teacher for next year are going to meet soon to start planning for her transition to school. Although Amy's Kindy has an excellent Kindy-to-school transition programme; Amy will need a bit longer to warm up to her new environment. I have already decided that she will start school for the first term just doing mornings. As an ASD child; new environments take a lot of adjusting to so it's best to start small and to introduce school in chunks.

I have a lot of fear and anxiety myself (!) around Amy starting school. I am now on the local committee for Autism NZ Nelson/Marlborough and have had some insightful conversations with other parents on the committee. The bottom-line is: school will most likely be problematic at some point - it's just the way it is. We are talking about a child with social and emotional problems thrown into the mix with other children. I can pre-empt and prepare for some stuff - but I am going to have to foster my relationships with Amy's school for next year as I won't be around as much as I have been in the Kindy years - it's just the way it is at school.

Basically, the older Amy gets, the more I've had to loosen the umbricial cord. She is growing up, just like any other child. Interestingly; it is Amy who often calls the shots on how much space she wants from her dear old Mum. She has slept through the night for about five nights in the row recently - as in, in her own bed - alone!! This has happened before, off and on, for the last four plus years. The difference is - Amy is aware of sleeping in her own bed - and proud of it: "I slept all the way through!" Sure, she ended up in our bed for the night the night before last but I do believe something has shifted.

Sleeping-through the night has been a similar process to toileting. Amy needs to feel comfortable and ready to reach her milestones. It was clear from early on that toileting wasn't going to happen in two days or two weeks like it can with regular children. Star charts and bribery worked for about five minutes - Amy just wasn't convinced toileting was something she needed to participate in.

Amy is still what you call "habit-trained" as far as toileting goes - she needs lots of prompting and although she can use the toilet; often we have to slip a potty underneath her when she is zoned out and past doing it for herself. It has been a huge milestone for us to have her poo in a potty - at the age of four and a half. She now only wears a nappy at night which is huge progress - and occasionally the nappy is dry in the morning.

Toileting issues and ASD seem to go hand in hand. These kinds are a mix of being very determined and incredibly anxious which means toileting becomes one big mine-field. The only thing that works is just to take it at the child's pace.

I will be starting a second job next week. I currently work Sundays which is Daddy-daughter day and seems to work well. But as of next week I will be working three mornings a week, while Amy is at Kindy. I know she is settled at Kindy and doing well but I do have ASD-Mum anxiety around being a little less in contact with Kindy, having to drop her off at 8.30am because I have to get to work (some mornings are slow ones on the ASD front) and not being on call should something go wrong. I have never been called into Kindy and don't think it would happen but I have valued been "around" while Amelia was at Kindy - being able to pop back early if I knew something was happening at Kindy that might cause her anxiety, for example.

But, both Amy and I need to start practising for school. She will need to learn to lean on her new teacher at school - just as she does with her current Kindy teachers. Some Mums might get upset if their child cries at Kindy but I am relieved when I hear that 1. she cried - it means she was able to let go of some feelings immediately and not contain them and 2. sought comfort from a teacher - it means she has strong bonds with her Kindy teachers.

As Dr Phil says; we are raising adults - not children - that goes for children with ASD also. I want Amy to be independant, to be able to self-regulate her emotions, to like and love who she is, to follow her dreams in life and to have strong relationships with the people she cares about. Just the same wishes as any other parents. The only difference is we may experience a few more road-blocks or obstacles along the way than those of parents of regular children, that's all.

Tony Attwood

The Friday before last I got an opportunity to go to a presentation by Tony Attwood. He is a clinical psychologist residing in Australia, who is very well-known in the autism field. He was very personable, interesting and certainly knows his stuff. The presentation was two hours long and was on Exploring Feelings: Cognitive Behaviour Therapy to manage anxiety, sadness and anger.

To be honest, it's taken me a good week to digest the two hours Tony Attwood presented. I have some ideas on how we might be able to build on Amy's emotional expression thanks to the presentation. I am also very grateful (once again) that she has intervention at such an early age. Tony Attwood empathised the importance of teaching the social and emotional stuff from Kindergarten age.

However, as per the last course I attended with an expert in the autism field (Celeste Littek),I came out with a high level of concern for Amy's future. The reality is, the difficulties she experiences in understanding social behaviour and processing emotions will impact her life greatly. Tony Attwoods course really was a heads-up that these kids on the spectrum who become teenagers and then adults with ASD or Aspergers are very likely to suffer from mood difficulties if they are not given the skills to cope with their social and emotional deficits.

Of course any child is at risk of turning to drugs or alcohol or developing an eating disorder as a way of coping with difficult emotions. All children need life skills - to be armed with coping mechanisms from an early age. I will certainly work on some of Tony Attwoods ideas such as creating a tool-box; ideas specific to Amy that help in the times she needs help decompressing.

Interestingly enough, today was one of those days in which Amy needed some guidance in letting go of the emotions that seem to overwhelm her. We're week two into the school holidays and it seems to be the way; sooner or later the lack of continual structure in the holidays gets to her. I have visual tools to help create structure in her day. In hindsight, not using those tools this morning didn't help things. Nor did telling my daughter we were going to visit a Kindy friend (that I was sure was home) then finding out that his family was probably still away on holiday. I know it is never wise to tell my ASD daughter of plans that could fall apart. Yet every now and then they do. And that's life. Sometimes it just doesn't go the way we hoped - I cannot wrap her up in cotton wool forever.

Mind you, when I made my second ASD boo-boo today and took my daughter, my neighbour and her newborn out to a teenage Mums group only to find it was closed in the holidays; I just about banged my head against a wall! Why didn't I phone?? Things do close-down in the school hols. For the second time today my daughter had anticipated going somewhere and it fell through - not good for an ASD child who is halfway through the school hols!

We ended up having afternoon tea with the neighbours - the same ones with the newborn and then all went for a walk to a nearby playground. Although Amy was able to let off some steam there she clearly was out of sorts. This was especially apparent by the time her dad came home from work. By the time she'd had her shower she was physically starting to attack us - a red flag that meltdown was on the way. I put her in her room on a time-out where she tried very hard to hold back the tears. It is extremely heart-breaking to hold the door shut on your four and a half year old as she fights back tears. She will actually say "Nope, nope, nope!" as the tears threaten to escape. She just does not like getting sad.

She had a similar meltdown on Saturday night - Amy refused to give in to her overwhelming emotions and had a semi-cry. Then around midnight she screamed and had a big cry in my arms. This is not a first and I am half-expecting the same will happen tonight.

Tony Attwoods talk was essentially about how ASD children have extreme difficulty managing anxiety, sadness and anxiety. Our daughter is the living evidence of that! Where one of her peers seems to cry at the drop of the hat; Amy will sometimes not cry for three weeks or more. She seems to cry less the older she gets which to be honest is a big concern as her mother. There are tools out there to encourage conversation about feelings - books written by Tony Attwood himself, visual aids of faces with various emotions and children's stories about emotions. After tonights ordeal I am very keen to order some of these books and tools to help Amy in all this.