Gratitude

     It is at this time of year that I am especially aware of all the blessings in my life. I'm not sure if it's the chaotic goodwill that permeates this month or if it's the opportunity we have at this time of the year to look outside of ourselves and see how others are doing. Sometimes it's a scary picture. The opportunity our family had to be in East Vancouver while our niece and her high school classmates gave away coats, hats, socks, gloves and muffins was an amazing eye opener. My children have a new appreciation for the roof over their head, the food on their table and  the clothes on their bodies. My husband and I realized that not everyone at the corner of Main and Hastings is drug addicted, alcoholic or a prostitute. Stuff happens. Choices are made. Fate intervenes and we are not where we wish we were. We talked to folks, good folks whose luck had run out. And then we go home to our warm, cozy homes with full fridges, clean sheets, messy closets and gifts under our tree. We don't have everything but then again, we do. I cannot say that I will never complain again about my lot in life. I'm sure I will. But I shouldn't. I am blessed beyond measure. Ten fingers, ten toes; I have it all.

Buddies

     My daughter's SEA (Special Education Assistant) has been working additionally with a younger boy new to our school this year and because my daughter usually spent lunchtimes alone or chatting with the supervisors, she has had an opportunity to get to know him. What a great experience it has been for her to spend time with this little guy! My daughter comes home daily with wonderful stories of time spent with him; what he said, what they did together, how he made her smile. Her "little buddy" as she calls him has become an important part of her school life. This relationship has also brought out a caring, almost maternal side of my daughter that we have not seen very often. As this is her last year of elementary school, she has already enlisted her younger sister as his "big buddy" for next year. Over the years, I have witnessed other examples of how this buddy system is helpful and rewarding for both the older and younger children involved. My daughter's relationship with her little buddy has allowed me to experience first hand, what a precious and enriching aspect of life these connections can be.

Patience

     My patience was worn to a very fine thread this afternoon when my older daughter locked my keys in my car. It should have been no big deal but I had spent the afternoon clearing out a very crowded bedroom so it could be repainted and then realized that I was late picking up my daughters from school for a doctor's appointment. So we're rushing... and we're late.... and after-school traffic is slow and busy...and we are discussing a very serious subject in the car, which is hard to do when you're also driving. I park the car--- there's a spot out front----hurray! My daughter reminds me several times to lock the car door after we climb out and I have already done that, of course. We get into the doctor's office and she's forgotten the prescription she wanted refilled, in the car. I hand her the keys, she goes out to the car, comes back in, without the keys. Oh, I had just had it!  Fortunately for both of us, we were in the doctor's waiting room, so I was forced to keep my comments brief and quiet. I called B.C.A.A., was told it would be an hour and it turned out to be about 15 minutes. No big deal, right? Calm was restored and we headed next door to Dairy Queen for a treat. And as my daughter reminded me on the way, she did not do it on purpose---it was an accident. And that really is the point. It's the intention of the act that matters. She did not intend to aggravate me right then. She is always trying to please me. Why do I find that so easy to forget at these mildly trying moments? Both my girls are lovely,well-mannered people who try to do their best, no matter what. Maybe I should try to do the same.

Trying

     We attended my 12 year old's choir Christmas concert, which was a wonderful experience. The singing from all the age groups was touching and beautiful as was the music from the brass quintet which played as well. What brought tears to my eyes was the ferocious concentration of my daughter as she struggled to sing, smile and sometimes dance, all at the same time. I sometimes forget how difficult it is for her to do more than one thing at a time. As her mother, even I lose track of my daughter's abilities and disabilities. I have to be dragged back sometimes, to remember. As my daughter has no outward signs that she is an additional needs child, with a profoundly challenging learning disorder, even we sometimes expect that she can do everything a typical child can do. I am always having to tell people or remind them what her limits are, at various times, in different situations. But sometimes, even I forget. When I saw her on the stage, I remembered. Even the seemingly simple, joyous experience of singing and smiling and dancing is not easy for everyone. It's not easy for my daughter but she tries and tries and tries. And that's only one of the things that we love about her.

Team Sports

     This week our daughter will play in a volleyball game against a team from another tiny country school around the corner. This will be a first for her as she has never been on a team of any kind. Her relationship to sports has been quite tenuous because of her learning disorder.  Non-Verbal Learning Disorder includes a whole list of fine motor, gross motor, balance and spatial difficulties along with the inability to comprehend non-verbal communication. So we are very excited that our 12 year old has this opportunity to play a game she has found she enjoys, with a team of her classmates. It sounds like such a small thing but for us it is large. My daughter is used to being picked last for school yard games and things. On the "Big Bang Theory" Sheldon stated that he was always last to be chosen, unless there was a kid in a wheelchair. Then he was second to last. And that's how it's been for our daughter. And regardless of how well she does at the game, the important piece is that she belongs. She is a member of the team and that matters to her. When it looked as though another activity was going to interfere with this volleyball game, she said to me: "But Mama, I can't let my team mates down!" And that is a feeling that my daughter has not felt often in her 12 years of life: there is a place on this team for her. She belongs.

School

     Our school is great. My husband and I love it. It's small and intense at times and everyone whose kids attend it has strong feelings about it. The reality of a tiny, old school in these times of no money and big apathy is rare. We know that we are getting away with something so we guard it and try not to take it for granted. We have a varied population of students from millionaire's children to regular folk. Also the teacher and staff profile has been broad but with some real gems. And I mean that sincerely. They are caring people and it shows. They might ride to school on their bicycle or teach your kids the lyrics to a favourite Beatles song. Maybe they let you know how much they appreciate your child's compliments (especially since you've been working on the power of positive thinking with her). Maybe they take the time to write a hand made card to your child telling her how well she did today. Maybe they just wave to you across the parking lot when you weren't expecting it. It all adds depth to your experience as a parent and a person and makes you glad to be here. When I see kids at our school picking up garbage together in the playground or taking turns skipping, helping each other sew the trim on their Christmas stocking or hugging after a 3 day weekend, I know we are in the right place. It's not perfect, but sometimes it is.

Too Much

     I just talked to a mother whose recently diagnosed daughter is really struggling. Her assessment determined an Autism Spectrum Disorder but what is really overwhelming right now is the intense anxiety she is experiencing. This mother's entire efforts are geared towards getting her daughter to school, getting her to stay there, and then debriefing her experiences there which of course, vary from day to day. This mother is overwhelmed. Many of us can have days like this with typical children but with specials needs kids these days are more common than not. They can take their toll on the family, their marriage and the other kids.
     I felt very useless.What could I do to ease this mother's experience? How could I help her? It turns out there was not a lot I could do. Sometimes when things feel too much, when we're overwhelmed, all we can do is share our story for a few minutes. It's not a lot, but it helps. I have been in similar shoes and have felt my  own load lightened by sharing it with someone who cares.Whether we're the teller or the listener, sometimes that's all we can do.

Sick

     It never fails. The minute I write about self care I get sick. Nothing too terrible--- I'm just hurting enough that I can't work out, and ill enough that I don't want to spread my germs around, except to my immediate family. It's too late for them anyway. If they're going to get it, they will. I'm sure it's not much more than the "it's only November, why is it so cold and miserable outside already" blues coupled with a sore shoulder and a touch of the flu. This is not my best time of year. Now that I have kids, I enjoy Christmas, but my mood definitely takes a hit around now. I try to exercise, take Vitamin D, stay connected and do what I can. It's not easy. There is probably more I could do but it's also important not to get overloaded. As the old AA adage reminds us, just take it a day at a time.

Recharging

     No matter what our situation, we need to take the time to recharge and renew ourselves. When I did hospice work, that was crucial. You can't give much if there is nothing there to give. It's important to be kind to ourselves and get what we need to feel whole and effective as parents, partners, friends and others. For me it is a bit harder to do in the winter--- I love to garden and be outside in the sunshine. There is not much of that around Vancouver right now. There is painting, reading, playing games with my girls, doing crafts with them, watching a good movie. All of these are refreshing and re-energizing for me. And so I take the time to do them. What have you done for yourself today--- or this week? You'd be surprised how good it feels....

Waiting

     This morning I talked to a couple of mothers who are waiting--- waiting for assessments, waiting for pediatric appointments or appointments with specialists, waiting. It is not easy to wait when your child needs something. We all have to do it but it's one of the frustrations of being a parent of a special needs child. There is a lot of waiting.
     And as these parents, we are of course, extremely grateful that there are people, doctors, programs and teachers who can help our children. Our children could not make the progress they do without these folks and these programs. I try to make sure that my appreciation is apparent--- that I write and say thank you, every chance I get.
     These times of waiting can give us a chance to do some research and get better prepared for what is ahead. There are many informative and supportive websites and books that we can use to educate ourselves. When we know each other,we can talk and write back and forth; give a listening ear, vent our own worries and frustrations, share our small triumphs. And, there is still the waiting.

Communication

     I just received a call from a mother with a special needs child at our school who is trying to figure out who to talk to when things go wrong or right. There is always a chain of command and when you have a child with an SEA (Special Education Assistant) it's sometimes hard to know who to approach. Do you talk to the classroom teacher, to the SEA, does the SEA take her direction from the classroom teacher? Does it depend on who you have on your team? Personally, I have tried to stay in touch with our SEA on the day to day matters through my daughter's planner. If something needs to be said in a timely fashion, I seek her out. But by using the planner, I think that the classroom teacher also has access to the information or question that I have. It is a complicated matter. You don't want to go over people's heads.  You also don't want to trouble someone who cannot help you with your concern. It's a learning experience every day. And like most folks, I usually feel like I have more questions than answers. How about you?

Introduction

     Together with my husband, we are the parents of two daughters, one of whom is learning disabled and has a seizure disorder. We have been in the school system  for eight years now and are still learning how it works. Our purpose here is to offer information and support to other parents with children with special needs, particularly those from our elementary school and school district.
     Our PAC goal setting session identified a need for some type of support and education for parents like us, either through a blog and/or a group setting. This is it, just getting started.