Patience

“Geez, you must have a lot of patience.’’ This line was uttered to me twice within a space of twenty-four hours. The first time was after calmly sorting out Visa issues with a group of travellers who barely spoke a word of English between them, by an Australian businessman who was stuck in line behind the group. I sighed in weary resignation to the Businessman, giving him a ‘what can you do’ shrug. In reality, I felt a deep empathy with these travellers and compassion for their plight, feeling resentful towards this Businessman’s lack of tolerance.

The second time was by a Mother at the local playgroup my daughter attends. Elizabeth simply refused to come over and join in with the other children, preferring instead to cling to the fence in hope it would be her gateway to freedom. I would have shrugged off these words if it weren’t for what she said next. “You must get really short with her sometimes.’’ I baulked at this. At the playgroup Elizabeth never threw things, or snatched toys, nor interfered with the other children’s play. She simply did not want to be there. And I could not blame her. It was a hot muggy day, the kind of dog day that makes everyone a little grumpy. I would also love to be in the cool, comfort of my home, sitting back and watching my favourite DVD. Not being forced to socialise of group of people who were not so tolerant of differences as they pretended.

Scooping Elizabeth up in my arms I gave her a kiss on her wet cheek, my heart going out to this beautiful, little girl. “Lets go home.” Giving a cursory wave to the other Mothers I walked through the gate. Perhaps if that Businessman had a child with a disability he too would be just that little more compassionate towards the plight of others. But I’m also starting to learn that perhaps I should not be so judgemental towards those like that Mother and her (genuinely) thoughtless comments. They live in a different reality to what I do and their comments are based on ignorance not spite. I too remember being quick to judge those parents with their screaming children trailing behind them in the shopping centre. Now I know life is not so black and white.

Labels

My life has been a chaotic mess of late which is only going to escalate with an impending job change (I finally got my rotation notice, six years overdue), so after another sleepless night and hot, muggy day I packed up my daughter and headed towards the local shopping centre to enjoy the cool air-conditioning and just unwind. Elizabeth fell asleep quite quickly so I was able to enjoy a Latte and just browse. About an hour later she woke up so I headed to the closest Parents Room to warm up her milk so I could finish up some shopping before we headed home.

Once we got to the Parents Room though all these plans came undone. Elizabeth, without any warning, started throwing up. Before I could get her to the sink she had thrown up over the pram and the both of us, leaving a large sticky puddle on the floor. Trying not to cry, I undressed her and threw her clothes into the sink and washed her face and chest down. Then, with a little toddler cuddling into my chest I tried to mop up the mess but it was just too much. Giving up, I rang my Mother to see whether she could get there with a change of clothes. At this time a cleaner came in to help clean up the mess, she even scrubbed the pram (I will be forever thankful for her help).

For the next twenty minutes a parade of perfectly coiffed Mothers with their $2000 Bugaboo strollers went in and out of the Parents Room as I stood there with Elizabeth in my arms, spew clinging to my thin shirt. I held Elizabeth closer, feeling their judging eyes upon me. Not one person asked whether I needed any help. When my Mother finally arrived I quickly dressed Elizabeth and head down, navigated my way towards my car, which happened to be on the other side of the shopping centre. On the way I passed one of my friends from work who pretended not to see me. We used to catch up regularly for coffee, that is, until Elizabeth was diagnosed with ASD. Like she was afraid it was some disease her child could catch. I use to feel angry, now I just feel defeated.

Empathy

After watching the news about the devastating fires down South and the terrible lose of life I began thinking how awful it must be knowing that your family was about to perish and not being able to do anything about it. Sensing my distress, Elizabeth cuddled into me on the lounge and stayed there until I had wiped the last tears away, giving me a kiss on the lips before going back to her toys. And they say that autistic children lack empathy.




Mother and Child Lord Frederick Leighton c.1865

A good day

After a disastrous day at the Special School last week I was a little nervous driving back there today, although I was somewhat buoyed by the successful session we had with Elizabeth’s Speech Therapist on Thursday, and the tear free day we had at the local Playgroup the day before. When we arrived the teacher was playing gentle classical music, which set a relaxing tone to the start of the playgroup. Elizabeth obviously did not have any ill memories of the room as she happily rushed over to the toy boxes and was quite content to explore while her Nan and I chatted with the other Mums as they arrived. She even seemed as excited as us when one of the little boys took his first tottering steps to the cheers of all (at two and a half it had been a long, drawn out battle to get him this far). For you see, for Mums like me with children with special needs, the ordinary is extraordinary.

We all then went out into the large playground where several activities were set up. Elizabeth had a great time going down the slide, getting pushed on the swing, kicking her feet through the sand pit and splashing in the little pool. Of course, she completely ignored the craft activities. But as one wise person said to me, choose your battles. We then went in for morning tea and to wind down for circle time. Elizabeth loves her morning tea, especially watching the other children. After she finished her yoghurt and crackers, she even shared a date scone with me.

During circle time I placed Elizabeth in a small chair as we thought she would be more comfortable within her own space and we were right. She was happy and relaxed during reading time and sat quietly as her teacher sang Twinkle Little Star and Baa-baa Black Sheep, incorporating the use of Makaton (signing) with me trying to keep up. This time the music was kept at an acceptable level and did not disturb Elizabeth’s sensitive ears. When the music instruments came out she fell asleep in Nan’s arms and didn’t even flutter an eyelid at the clanging bells. It was the end to a perfect day.

Post note: For those parents with young children with special needs the Playgroups at the Special School’s can be a wonderful, supportive environment, where you can talk out your frustrations with other parents who have some idea of what you are going through. The children in Elizabeth’s playgroup all have various disabilities, from global developmental delays, to autism, to cerebral palsy. But the one thing they do have in common is they are all beautiful, much loved children.

New Therapist

We had an appointment today with Elizabeth’s new Speech Therapist, Kate. As last week was more of a consultation, today was going to be the first one-on-one session and the test to see how well Elizabeth responded to Kate.

When we went into the therapy room Kate had already set up a PECS board (Picture Exchange and Communication System) with a card for bubbles and a card for a wooden toy with the corresponding items off to the side. Elizabeth settled herself down into one of the large, adult chairs, ignoring the brightly painted children’s chairs. I quietly closed the door, as Elizabeth is usually claustrophobic in small rooms, but she didn’t notice as her eyes were on Kate who settled on the floor in front of her.

Straight off Kate showed Elizabeth the board with the two cards and said in a bright, sing-song voice ‘’Bubbles?’’ She waited for a couple of seconds before dipping the stick into the mixture with exaggerated care and saying “Go” whilst making the corresponding sign before blowing the bubbles. She would then repeat the word “Bubbles” before popping the bubbles “Pop, pop, pop.” The whole scene was very animated and Elizabeth found it absolutely delightful. The wait between “Bubbles?’’ lengthened to see if Elizabeth would initiate the interaction by signing “more’’ and then handing Kate the card for “bubbles” (I had been doing hand-over-hand to show Elizabeth what she needed to do to have more bubbles).

Once Elizabeth started getting bored Kate moved to animal sounds. Showing Elizabeth all sorts of animals and making the sounds for them to see whether Elizabeth would imitate her. She did not but she watched Kate with great interest. It was at this stage Elizabeth realized the door was closed. To quickly divert her Kate pulled out the bubbles again and after three goes Elizabeth started picking up the card to initiate more bubbles. On this happy note the session was ended.

The appointment lasted for forty-five minutes and almost the whole time Elizabeth had her attention on Kate. Kate was actually quite impressed by this as she said most autistic children would usually spend the time pulling her office apart. When Elizabeth was around twelve months of age she loved pulling my books down from the bookcases. Each time I would firmly say “no” and redirect her to her toys (I don’t believe in hitting children). When she realised that she never got reprimanded when she made a mess of her toys she started leaving my books alone. This soon translated to all mummies valuable possessions. Now when she goes to playgroup or a friend’s home she goes off and plays with the toys (well, her version of play) but never pulls objects off shelves or gets into anything she shouldn’t. Of course this doesn’t stop her from looking, I often find her on her tippee toes checking out the contents of a bookcase with the look of mischief on her face.

After such a successful session we have now plan to see Kate on a weekly basis. It is so wonderful to find someone Elizabeth has such a great rapport with. After yesterday’s success at the Playgroup and today’s session, the crying, miserable child Elizabeth was on Monday at the Special School seems a lifetime away.

Playgroup

After a very upsetting day at the playgroup at the special school in which the too loud music was just too much for Elizabeth’s sensitive ears, I decided to take her to the playgroup at the local church. I use to take Elizabeth there up until her diagnoses at age two. I don’t know why I stopped going, perhaps everything else just got in the way. But I remembered the lovely, elderly lady who took the group and all the wonderful toys and activities she put on for the children. Not knowing how Elizabeth would react nine months later, I took my mother along for moral support.

I made sure we were the first ones there so Elizabeth could get used to her new surrounds. At first she was hesitant and a few times she put her arms up to be cuddled with that all to well known desperate look in her eyes. I was a little apprehensive at this stage, as I really wanted Elizabeth to have a good time. Spotting a large plastic, crocodile I settled Elizabeth onto it and showed her how to rock it. This seemed to distract her for a while so I could greet the other mothers.

The more children that arrived, the more Elizabeth settled in, especially when she realised that Nan and Mum weren’t going to force her to do any of the craft activities. Although she didn’t play with any of the children she watched them intently, her eyes following everything that they were doing. After a while she would check out a toy or chill out in the little cubby they had set up. She even had a couple of goes on the slippery slide (although it was not as fun as the one at the park). When morning tea came she sat with the other children, devouring her plate before watching what the other kids were eating. She even stole a biscuit or two (only nine months ago she did not know how to chew). She did not get off her chair until most of the other children had finished eating and then she allowed Mum to wash her hands. I was beaming with happiness at this stage.

After morning tea it was bubble time. Elizabeth and a little boy were the only two who were interested in the bubbles. In fits of giggles they crashed into each other while they chased bubbles about the yard. In that moment she looked like any normal, happy two year-old. After this she even got the courage to go up to each child and greet them with a little hand flap. Although one child did gently push her away and tell her that it was now tidy up time.

But it was music time that had me filled with pride. Elizabeth was the only child who paid attention to Aileen as she did renditions of Five Little Ducks, Heads and Knees, and many others. The other children were two busy fighting over their instruments or bashing their maracas together under a table (for which they got a stern warning). And when Aileen put on a Wiggles tape Elizabeth was the only child who got up and danced. Despite the chaos around her I was blown-away by Elizabeth’s level of concentration, but I guess that is one of her autistic characteristics.

Although Elizabeth is, in many recepts, quite different to many children her age, she has so many amazing qualities as well. I was so proud of her today. She is growing up to be such a gentle natured, delightful child. I’m actually beginning to look forward to tomorrow.