Archive for August 2011
I might have done it at any point during the last week. It might have been as Pudding climbed up my body and held on tight as she refused to go to school. It might have been any day I had to scoop up Cubby to take him home from Pudding’s school, because he wanted to stay there. It might have been bending down to put on shoes, or picking up discarded toys. It might have been pushing Pudding on her indoor swing to get the vestibular input that she needs. But I think I hurt my back on Tuesday.
On Tuesday I’d gone with my another mother to a playgroup with her kids. She thought Cubby might enjoy it too, and she was right. The class was run by an occupational therapist, designed to get toddlers involved with sensory-motor play. Pudding is only in school in the morning, and I wasn’t sure how she’d do in the class, but we went along away.
Almost immediately, Pudding was overloaded. It was busy and over-stimulating. The room was filled with toddlers and their mothers, and all over the walls and hanging from the ceilings were props from that week’s theme: nursery rhymes. Pudding ran around to touch everything, which was the whole idea, but Pudding doesn’t know her own strength, and I had to leave Cubby as I trailed around making sure she didn’t break anything. It was time to sit down for the class, and Pudding didn’t want to sit.
The music began. It was loud. Too loud for both my kids. Too loud for me these days, feeling every sensory assault for them, even if my senses are perfectly in sync. Cubby spied some toys outdoors and began hammering on the patio doors to get out. I was still holding Pudding down, and unable to bring him back to the circle. Eventually I made myself heard over the music, and by some miracle he returned. There were songs and dances, and soon Cubby was participating, so we stayed. Pudding quieted down and remained on the mat beside me. Then it was finally time for outdoor play.
All the kids stampeded outside, but for one: Pudding. She was curled up in the child’s pose, her arms wrapped around her head. The din was too much for her. I stroked her hair, and asked her to come outside. She didn’t hear me. She’d protected herself by withdrawing. I pulled her into my lap and she closed her eyes, her senses too confused to adequately protect herself from the onslaught.
I needed to get her away from the noise. I picked up all 50 pounds of my incredibly tall 4 year-old, and carried her outdoors. Instantly she was better, but I paid the price as I pulled the muscles in my back. It still hurts if I bend down, twist my spine, or lift something up. I don’t know about you, but I’m always bending down, twisting, or lifting something, or someone up.
If you are a caregiver, the chances are that at some point, you will hurt your back. Perhaps your loved one has a physical disability, and you help to move them from the wheelchair to another chair or bed. Maybe you are a carer for someone like my girl, who has balance problems, and seeks support by hanging around your neck, throwing your center of gravity off. It could be that you are at times hugging or carrying your child as though they are still a baby, only they weigh several times what they did as an infant.
In the last few months, life has been hectic. I’ve slipped with the one thing I shouldn’t: taking care of myself. I didn’t bring any workout videos with me in the air baggage. I intend to join a gym as soon as the kids are both settled in school, but we’re not there yet. It will absolutely become a priority now. The kids are depending on me, perhaps a little more than most children depend on their mother.
At least this was only a minor injury, and I’m sure to recover very soon. I’m glad for the reminder to take care of myself, keep myself healthy, both emotionally and physically. I’m the backbone, the support for the family, and I intend to be that for as long as I have to. I need to be strong.
Though it pains me to write it, the honeymoon is over.
Yesterday Pudding had her first day of evaluation at an early intervention/ school for children with autism. To say she didn’t want to go is putting it mildly. Her big eyes filled up with tears as she begged to stay at home with me. It was hard to ignore, particularly as I’ve seen such growth in her by staying home with me. Like a new bride, I was focusing only on the good, and turning a blind eye to anything that interfered with what I wanted to see. I’d been awake since 4 am, dreading the end of our sheltered time away from the outside world.
When it came time to drop her off, she was clinging to me, alternately screaming and pleading to go home with me. I felt a weight in my chest as I struggled not to cry myself. In the short term, the easiest thing would have been to carry her out of there like I was Richard Gere in “An Officer and a Gentleman.” But life is not like Hollywood, and a child with autism needs therapies. I can’t give her everything she needs, though I wish every day that I could. Nope, this isn’t the movies, although Pudding would have looked very cute in the sailor hat.
I collected her, and she rushed to get her backpack and then led me away impatiently as I tried to get a feel from the therapists about how her day had gone. At home, she was a bundle of anxiety and hyperactivity. We saw a return of old behaviours that I felt were left behind- mouthing inedible objects, picking at her skin, and climbing on the furniture. Although I caught her in the act with the latter, right before dinner time she climbed again, and a nasty fall left a gash and bump on her forehead.
Once upon a time Pudding was quite oblivious to pain, and she still recovers well from little bumps and scratches, but this one was bad. She was crying in pain, her little heart was racing and everything was just too much. I cleaned her up and dressed the wound. After a few cuddles, she was ready to venture downstairs for dinner (with the understanding that there would be a cupcake for dessert).
No sooner had we made it downstairs, than she started screaming and ran upstairs. When she finally managed to speak, we learned that her distress was brought about by the arrival of a new vacuum cleaner for the house. I was incredulous. We’ve dealt with her fear of hoovers. I’ve been able to vaccuum with her in the same room for a long time. This was still new in the packaging- it had never been switched on. We were hurtling down a backwards slope.
I hid the offending item, and after much reassurance that it was gone from the house and would never be used in her presence, she eventually came back downstairs and we got through dinner. I’d felt sick all day, physically upset at the change in Pudding. My sunny little girl once again plagued by anxiety. I didn’t want to go back to real life, but it was already over. There is more work to be done, and the gown and veil would just get in the way.
Then this morning she woke up….fine. After a brief attempt to let me know she wasn’t going to school today, she nonetheless got ready, and helped pack her lunch bag. She said nothing on the journey there, but when we arrived she went straight to her cubbyhole, left her backpack, and went to join her class. No fuss, no drama, no tears. There was even the tiniest smile as she began her day.
The honeymoon might be over, but that doesn’t mean there can’t be a happy marriage, even with ups and downs. We’ll enjoy the good, and support one another through the bad, and when this tour is over, we’ll be stronger and closer than ever. You never know, sooner or later we might even get a second honeymoon.
Pudding gripped the GPS in her hands as one would a steering wheel. As she drove around the room, she tilted it this way and that, turning corners. Finally she parked on the chair beside me and said,
“You have reached your destination.”
This entire imaginative play scenario was devised by Pudding without any assistance. Inventing, using her imagination, making toys out of ordinary objects has increased leaps and bounds since we arrived here. With most of her toys and playthings on a ship heading this way, Pudding has had to find new ways to entertain herself, and she has stepped up to that challenge in an amazing way.
Naturally, I had been concerned about what would happen to Pudding and Cubby’s development when we moved. With their environment completely altered, with their routines destroyed, with no school, no therapies, I feared their development would stall- or worse- go into reverse.
But from her why questions, to playing with her brother, to imaginative play, Pudding is going from strength to strength. And Cubby? Cubby is just happy. I never thought of him as being unhappy until I witnessed the change in him since we arrived. He is bolder, more chatty, and excited. He is interacting more with both children and adults. We signed him up for a football class (or soccerball as he would have it) and though he was by far the youngest child there, he surprised the coach and the other parents with his ability to follow directions and cooperate in a team.
Spectrummy Daddy is enjoying getting back to what he does best, and is happy to trade in the hours of commuting by bus and metro for a short walk home.
And me. We hired the housekeeper who worked for the family who lived in our house previously, and she now bears the brunt of the housework. I’m free to actually enjoy my kids. Currently without school or therapies to get to, we are just enjoying our time together without having to be somewhere else. I feel lighter and happier. I’m even making plans to join the gym once the kids are at school in the mornings.
Everyone has noticed the change in me. I feel that for the last couple of years our family was stuck in an endless traffic jam. We’ve taken a detour on the “road less traveled” and we are finally able to get our foot down on the accelerator. I’m warned that this is the honeymoon period, but my actual honeymoon only lasted 5 days, and here we are after 3 weeks, every day I feel happier and more settled here.
We haven’t yet reached our destination. But for the first time in a long time, I feel like we’re really getting somewhere. I can feel the sun on my face, and the breeze in my hair, and I’m enjoying the ride. We all are.
This post was originally published at Hopeful Parents. You can find it by clicking here.
On August 16th 2011, Pudding asked me a why question. She was wearing a Hello Kitty top, blue leggings, and Disney Princess socks. I was drinking tea, attempting to warm up after a cool day in Johannesburg proved it really is winter here after all.
As she bounced into the room and her fingers explored every surface, they found the switch of the lamp. She flicked it on and off, as she has done every day since we arrived, but this time it didn’t turn on, and for the first time ever she asked me why.
Just like that. So naturally and spontaneously that a stranger observing might take it for granted. But not me. Every detail is forever etched into my memory. The pounding of my heart and the giddy, elated feeling.
I can’t tell you the day she first smiled, sat by herself, spoke her first word, stood alone, or even took her first steps. I have the memories, but they are pinned down to weeks, not days. Though I’ve been asked countless times on countless forms documenting her development, I give vague answers. 4 weeks, 5 months, 10 months, 12 months.
Those answers satisfy the professionals, looking to pinpoint when her development went awry. But they don’t satisfy me.
I have replayed those milestones over and over for the last two years, but I can’t get more specific. The truth is that I didn’t accord them the attention they deserved. I was the stranger observing who took them for granted.
Moments after she asked and I even managed to answer her question, I shared this milestone on Facebook. A friend commented that this would herald an exciting new phase of development- the why question being a “gateway milestone”.
I had to applaud her choice of words. No longer the stranger taking milestones for granted, I am now a developmental junkie. I’m addicted to observing the miracle of development, not just in my own children, but in every child I encounter. I can’t get enough, even when I have to be patient with a small stash. I knew that it was a year ago (and four days) since I’d written that Pudding doesn’t ask why. I knew, because I’ve been waiting for this fix ever since.
When I first held Pudding and Cubby, I remember the sudden burst of love I felt for them. Already I was taking for granted so many things: their health, their strength, even their just begun lives. Never again, for either child. I take nothing for granted, appreciating just how fortunate we are.
Likewise with development. Whether milestones are hit strongly and surely (if a little tardily) in Cubby’s case, or later and sporadically as with Pudding, I marvel at them, and the high that they bring.
At times I think of that stranger who soberly observed the milestones in her children. She never knew the intoxicating feeling that rushes through this addict as I witness the many miraculous milestones of everyday life.
After a few hours of riding this high came the inevitable comedown. Was this just appropriate echolalia? And just how long will it be until I hear the next why? I tried to shake my way out of withdrawal by focusing on how huge that milestone was.
Then yesterday at 8.47 am still wearing her nightgown she brought something to me. It was my GPS that I’d removed from the car for my husband to look at. Driving around unfamiliar streets in a new country, I’d been unnerved as it kept dropping the signal, or turning itself off inexplicably.
“Mummy, why is it not working? Is it broken, Mummy?”
Not broken, it just works in it’s own way, on it’s own time. I’m just going to have to be patient about it. But you, my sweet, you are the fix.