moogielight

musings on art, life and family from a crunchy mama


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 No Regrets

There is a post going around the special needs/autism community about the ways in which autism ruins parents’ lives. The article, written by someone who knows a family with a child with autism, focuses on the horrible ways in which their lives are affected and advocates for prenatal testing with the option to terminate if a positive is returned. It says all their lives would be better without that child.


As a parent of a child with a rare genetic disorder that comes with  intense behaviors and another child with significant sensory needs that can lead to meltdowns, I share the outrage many feel over this post. It reduces our lives as parents of special needs kids to the hardest moments, to moments the outsider doesn’t understand and doesn’t want to see. It creates an image of us that is based on despair and fear of the unknown. 


Today, our youngest had a huge meltdown at church. One of her self-injurious behaviours (SIBS) is scratching and by the end, despite my attempts to restrain her, she’d gotten her ears pretty good and her face was raw and bleeding. I missed most of lunch to calm her and was rattled afterward. If the writer of this article had looked at my life right then, he or she may have seen only the struggle, may have said my life was being ruined by SMS. 

She would have been so wrong. 

What she wouldn’t have seen during that loud and public meltdown was the incredible accomplishment my daughter had just made, staying in the nursery without me or her dad or her sisters or an aide for the first time. She played for over an hour with the teacher and other kids with no intense behaviors. She had fun. She controlled her anxiety. I sat outside the door of the nursery listening, tears in my eyes, because I was so, so proud of her. 


What the writer wouldn’t see when she hears about the changes made to our lives to accommodate our children is that the bright spots are all the brighter because we and our kids have worked so hard for them. She doesn’t see us gleeful when our girl matches shapes or colors, says “off” with the “f” sound for the first time after months of therapy, when she jumps or stands on one foot. She doesn’t see the amazing hugs our  daughter gives or hear her incredible laugh or watch with amazement as she learns a new sign in a matter of minutes. She doesn’t see that she loves the beach as much as her mama and has a silly sense of humor. She doesn’t see the love she has for her sisters and how much they love her in return.


The lives of special needs parents cannot be reduced to the worst moments. Just like parents of typically-developing kids, there are good and bad moments, hard things that we have to work through and wonderful accomplishments.  Just like parents of typically-developing kids, we love our littles fiercely.

   

If I could wave a wand and take SMS away from my darling girl, would I? Yes, because it makes things difficult for her and it messes with her health. But never would I give up my girl to rid my life of SMS. Never would I consider my life ruined because of this syndrome. Harder? Yes, in some ways, many ways even. We have a long way to go with this challenging diagnosis and like the family in the article, there will be times we have to sacrifice, times we need help to help our girl be her best self. But Aurelia is strong and we, her family, stand strong with her, even when exhausted, inspired each day by her determination, her loving spirit and her silly ways. Never would I reduce our lives to those moments that are hardest. The good moments shine too brightly to be ignored.  


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Deciding to Homeschool

This fall we will be homeschooling our girls. This has been a big decision for our family, one we mulled over…and over…and over…for a good while.

For the past few years, Aria attended a lovely Waldorf school in Northern Virginia. She blossomed under the care and direction of the instructors there and the things Keith and I learned through parent meetings and other sources there have transformed and strengthened our parenting skills. Ani, who attended a Parent-Child class with me last year, also grew in her time at the school. We all loved it – the community, the philosophies, the day-to-day experiences. It was truly a blessing for our family.

As much as we loved it, attending the school was not without its sacrifices. We drove a long way each morning and because of that our mornings were quite hectic from the time we woke until we headed out the door. We ate convenient breakfasts in the car because we didn’t have time for the girls to linger over their food (and they do). Ani and I stayed in the area of the school until time to pick up Aria and on winter days, when we didn’t have plans and it was too cold to play outside for long and we’d already done all the shopping we could do for the week, we spent a lot of time just waiting in the car. That’s tough for a three year old.

Tuition, too, was a big factor for us, despite the assistance we received from the school. In exchange for the wonderful education, we sacrificed a bigger home (we were in a 2-bedroom apartment), a yard or locale near a park or bit of grass, the chance to get a dog, dance classes for the girls, yoga classes for myself. These sacrifices were worth it – we very much believe in the importance of our daughters’ education and in the experience they had at the Waldorf school – but they were realities.

Early this year, when first thinking about this fall, I thought I could make it work, doing the long drive with the three girls, fighting traffic, juggling the infant nursing schedule and the needs of the older two, figuring out activities or places to go across town for myself, a baby and an active but tired four year old as we waited for big sister to get out of her longer day. But the more I thought about it, the more I realized how hard this would be for our family. We would all be exhausted and that much car time would be excruciating for all of us, even more so if Aurelia was anything like her biggest sister was as a baby in the car (Aria hated it; thankfully, Aurelia does well so far). We’d gotten to the point that the sacrifices we’d be making outweighed the benefits.

Keith and I have thrown around the idea of homeschooling in the past, but I always thought it would be too challenging in such a small space. I couldn’t even consider it when they were both very young. As I started to realize we needed another option, however, I also started to consider this idea more fully. I didn’t want to give up Waldorf education for my girls, but I did want an easier, gentler life for us. I began researching curricula and found a wealth of information and resources for Waldorf homeschoolers. I found local Waldorf-inspired co-ops that would afford myself and my girls the community we will surely miss without the constant contact with our school and also some dance classes we’d finally be able to afford for the girls. It began to sink in that this was not only possible but likely a very good choice for our family and for the first time in weeks, months, I began to feel some peace about our future.

Then, suddenly, we needed to move and that sense of peace was thrown out the window as it became clear that our lives were changing more than we’d imagined – not only would a new baby arrive soon, but a couple weeks later we’d set off for a new home, in a new city. It was to be a good move, though – we’d have a house, with space for the girls to play, room to spread out a bit and, excitingly, there would be a Waldorf school around the corner.

We thought briefly about changing our minds. After all, traffic and a long commute is no longer a concern. Cost still is, however, and some of those sacrifices we were making last year are just too much to continue with three little ones. More than that, though, I think we need this time together after the upheaval of the summer.

Several people have questioned our choice to begin homeschooling, especially with a new baby. I admit, the thought is daunting, especially right now, when I’m deep in the planning of our year and looking forward to starting our lessons in a few short weeks. But, I also think this will be good for us – give us a chance to regroup after a chaotic and unsettling few months. It will allow us time to reestablish a rhythm, spend quality time together and explore this lovely new city we’ve suddenly and quite unexpectedly found ourselves in. We won’t be alone. The homeschooling community is vibrant here and we have already connected with a co-op that will support us, supplementing our lessons and giving the girls a chance to experience a bit of farm life each week, while also making friends in this new place.

We have a lot to do before our year starts. We are still unpacking and organizing the house, trying to create space to live and breathe, in addition to setting up a classroom of sorts. I’m collecting a host of supplies and preparing lessons and learning a few new skills, like the Waldorf style of chalk drawing and how to play the pentatonic flute. I’m nervous and I’m sure there will be a decent number of chaotic moments along the way, but it feels like the right decision for now.

That’s what this is, a for-now decision, not a forever one. If it’s not working well, we’ll do something different. We have made connections with the Waldorf school here – Aria attended summer camp there – and we plan to attend many of the community events they offer, both for support for our home lessons and choices and to build relationships. Hopefully we’ll occasionally visit our old school as well. In the meantime, though, we’ll be home so much more – we’ll get more time together, healthier breakfasts (crockpot oatmeal will be a possibility!), much less time in the car, fun activities, and we’ll have more residual income, while still following the Waldorf philosophies we have come to hold dear.

We are embarking on a new adventure here at home, one that will hopefully bring us closer together, allow us more choices, and help to move our family a bit farther in the direction we are trying to go. I’m looking forward to it.


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Teaching Kindness & Learning Patience

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Last week I finished sewing a dress for Aria and, excited (it’s the first dress I’ve made for her), held it up for her to see and asked if she wanted to try it on. She immediately pulled a face and said grumpily, “I don’t like red.”

This type of reaction has been common in our house recently. When presented with dinner or something else we’ve made or done or gotten for her, Aria will pout and grumble something about it that she does not like. Or, if she doesn’t know anything about it, as is often the case with a new food, she will simply declare that she doesn’t like it. Often, she actually does like the food/item presented, but is just grumbling for some reason…maybe a way to get extra attention. Too often, unfortunately, we have validated the poor behaviour with attention (usually negative) and it has continued to increase in frequency.

Recently, at a parent meeting at Aria’s school, another mom asked for advice on this type of behaviour, as her own child has been doing the same thing (must be the age). The instructor for Aria’s class related the story of a family she knows and how when the girl in that family would grumble and complain about something, the mama would simply say, “You may now say something kind.” In the beginning the mama had to explain that it is not nice to say mean things to someone that has just spent time making something for you and had to help the girl out with some kind suggestions, but over time this simple rule cut down on the grumbling and the girl got better at coming up with positive things to say.

So, this time, when Aria screwed up her face and pouted at the dress I’d just made for her, I took a breath, thought back to that parent meeting and didn’t get upset or hurt, but simply said, “You may now say something kind.” I wasn’t sure it would work as I’d tried this once before with mixed results, but I explained that it was not nice to say mean things about something someone has just made for her. I was careful not to emphasize that it was me that made it for her (though she knew that was the case) as I think this would’ve created more of a power struggle and the lesson of how to react when anyone does something for you would’ve been lost. She looked at me blankly, so I made a few suggestions and waited; she continued to pout. I told her she could stay where she was until she was ready to say something kind, then turned my attention elsewhere. A couple minutes later, she smiled a genuine smile and said, “I like that it’s a summer dress, Mama.” Then she stood up, walked over to the dress, pulled it gently off the hanger and put it on, letting me help her with the ties. She didn’t take it off until bedtime and even let me take some very cute pics of her.

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This experience was a great lesson not only for Aria but for me as well. I get so fed up with her negativity sometimes that I just react, upset and hurt, with negative comments and my own scowl or hurt expressions. Using this simple statement diffused the situation and helped me pull my own emotions out of it, stay calm and concentrate only on helping Aria understand why we don’t treat people that way and learn how to do better. It took the attention off her negative behaviour and therefore made it less attractive to continue. The whole situation ended much more pleasantly than if I’d put her in time out or scolded her for her negative reaction. She now has a bit better understanding of using kind words, I have a bit more patience for these situations, and the whole thing ended in smiles.

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Since that day, I’ve repeated this statement several times in varying situations (usually at the dinner table, but elsewhere as well); it is a process, but I’m finding great value in simple statements such as this one. They help me to stay calm and provide a clear message of what is expected to my spirited daughter. A baby step forward in parenting.

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