I am about to wade into a splash pool of controversy. A very small, shallow pool but still not a comfortable place for me. Recently there was an article called Pathetic in Pink making its rounds on Facebook, penned by a woman who does NOT like the colour pink, or princesses or small, blonde, white girls. I won’t include the article because it is, I believe inappropriate and hateful. The message is aggressive and the figurative language is used as a tool to express disgust. The subject of this woman’s tirade is children, a specific group of children, but children none the less. I was bothered by this article … a lot.
People who know me may think it is because I am a proud, pink wearing, tiara owning, mother of a blonde girl, kinda gal, and at first I wondered that too. But then I realized that I really could care less about someone else's opinion on the colour pink or any other colour for that matter. There is a cacophony of pink bashing articles these days. It is the new craze. Do I think it is worth discussion? Not really. But then every one has their own soap box.
What really bothered me about this article is the judgement. The choice this woman has made to judge others, even worse, judge other’s children based on appearance, based on what she thinks their lives are like. As an autism mom I know what it feels like to have my child judged. To see the looks and to recognize that someone is having a very negative thought about someone so precious to me. The sting of judgment is not a feeling any parent should have. It is not a feeling that should be directed at any child. I realize that this author was going for effect. That she was trying to stir controversy, get people talking. That she was using hyperbole to make a point. I get hyperbole. I love hyperbole. I have the word hyperbole set in pink diamonds across my tiara. I AM THE QUEEN OF HYPERBOLE. But those reasons do not negate responsibility. As women and mothers we have a responsibility to build other woman and children up not tear them down. It is time that we stop being such a judgey society. And if we can't manage to do that for other adults at least we should try to not judge children. Any children! All children!
I feel this woman’s hurt coming though her harsh words. She talks about the judgement her own daughter has faced. I feel for her, we have shared that pain. But sadly one of the gifts this kind of adversity often gives you is empathy and compassion for others. She did not seem to get this gift. Perhaps it was wrapped in pink and she wouldn't open it.
Parenting is a roller coaster of emotions. Autism parenting is a very fast, very high, very intense roller coaster of emotions. The kind of roller coaster you find in Bush Gardens. The kind I never get on. But I am riding this one, everyday. For the most part this ride involves a lot of screaming and holding on for dear life, but there are also times when the roller coaster crests for a minute and I get a chance to breath and feel something else … thankful. This thanksgiving weekend seems like a good time to talk about that emotion.
I am thankful for my children, all their strengths, quirks, needs, stims, talents, special interests, everything. Every bit that makes them special and makes them mine.
I am thankful for other ASD parents who ride the roller coaster with me and are there to discuss the ride, whether it be over wine or over the internet, they have my undying gratitude. Thank you!
I am thankful for social stories (thank you Carol Grey) and visuals and schedules and power cards and reward charts and all the things that make the lives of the many children I love easier.
I am thankful for the waitress/ store clerk/ flight attendant/ hair dresser/ etc that I randomly cross paths with, who instantly get it and are kind to my children with out being patronizing. Those people are gems.
I am thankful for ipads, OMG I am so thankful for the ipad. Although I have guilt about the amount of time my child spends on it I value it for its calming and entertainment powers.
I am thankful for the teachers and doctors and other professionals that have come into my children’s’ lives and have been such a tremendous support to them and to me. You know who you are because I would have told you over and over and over. Well I am telling you again, Thank You!
I am thankful for trampolines, puzzles, swings, clothes that have no tags, Dominion’s gluten free section, Rainbow Riders, fidgets toys, Disney, Shakespeare, yoga pants (for both Hayley and I ☺ ) supportive family, deep breathing and wine (that one is all me).
Thank you my lovely blog followers, I am thankful for you. I hope your roller coaster crests long enough this weekend for you to feel thankful too. If not, know that I will be holding tight and screaming along with you.
A diagnosis of ASD is made based on observable behaviours, but in recent years scientists are also able to learn more by looking at the brain through scans and post-mortem exams. Some studies suggest that the amygdala in individuals with autism is bigger and has more activity than in neuro-typical brains. More brain activity may sound like a good thing but in this case not so much. The amygdala is what I like to call the panic room. It is where the urge to fight or flight resides. It is a necessary part of the brain for survival but when overly activated it can cause a lot of anxiety.
Have you ever walked down a dark alley and heard footsteps behind you? Ok first of all what are you doing? GET OUT OF THE ALLEY!! Stay safe and avoid the dark alleys. But if you have or have simply watched some one do it on TV (much more sensible) you know that feeling. You might feel sweaty, your heart may race, you may feel ready to jump out of your skin. All in all not super pleasant. This is how our kids are feeling a great deal of the time and not just in dark alleys, but also in school, in restaurants, in Wal-Mart (Oh Lordy, especially in Wal-Mart). This is why we sometimes see behaviors like aggression or running. This is fight or flight. Our children are simply responding to the perceived threat. It is biology.
I don’t like to brag but my child’s amygdala seems to be super advanced. I mean really, really big. I am surprised she can lift her head. So she lives in a state of fight or flight most of the time. We have not been able to “fix” this and believe me it continues to be a problem but I have tried a couple of things that has helped. First and foremost I have tried to educate those around her. It is important that teachers understand the reason for the behaviours that may result from my daughter’s “super brain”. I have found that giving her a safe place to run has helped.
During Hurricane Igor her amygdala was majorly fired up so I created a little storm shelter, a relaxing corner, that she could run too when that need over took her. I have clients who have places in the school that they can go to when the need to run is too strong to rein in. Of course we work on strategies to help a child calm before this need kicks in but sometimes that doesn’t work. This is why it is important to think ahead and provide a safe harbour. In terms of the fight reflex, it is hard to fight with yourself. So my advice is step away from the amygdala. Let the child calm down. Do not try to physically engage at this time (unless you have found a deep pressure activity that works for your child or obviously if your child’s safety is at risk).
These are not foolproof ideas and it is a work in progress in my home and many of the homes I know. But understanding how the brain works helps us understand our children and better understanding makes our brains a little more super too.
Does your child have a super amygdala? Want to brag/lament/muse about it here. Go ahead, I love it when parents share.
This week little Johnny/Joanie/Hayley is going back to school (even though I am in denial).
This makes me feel a little nervous (I have been having school nightmares for weeks and I think my hair may be falling out)
I can be brave about Johnny/Joanie/ Hayley going back to school (wine can help).
I can prepare the teachers with a little write up (plus multiple meetings, emails, and a bribe if necessary)
I can prepare by purchasing school supplies (and cutting the tags off all the most comfortable clothes I could find, laminating visuals, purchasing sensory equipment, preparing multiple social stories and upping my medications).
My friends and family will be so proud that I am coping with this (when and if that day ever comes, right now they are barely tolerating my rantings).
My child will be so proud that I am coping with this (my child couldn’t care less and really has enough concerns about going back of his or her own to worry about).
I will be so proud of myself for coping (if I manage to let go of the back of my child’s coat with out school staff having to intervene I will reward myself with a martini and a whole cake).
It is going to be a great year (it probably will be but I will still be like this again next September ☺ ).
Well it is nearly that time of year again. The time when our children have to take off their pyjamas, put down their iPads and face the outside world again. At least that’s what going back to school means in my house. This transition can be riddled with anxiety and fear, but enough about us parents, it’s not easy for our kids either. So what can we do to make the transition easier?
Some of the things I have tried I’m sure you guys are trying too. In the two weeks leading up to school I start to adjust bedtime and wake time bit by bit until it resembles the school year schedule. We schedule things like haircuts, outing to pick out a new book bag and the like to make it feel celebratory. For some of my really reluctant little students I have even recommended a “next grade” party. Something that celebrates the move to a higher grade complete with a present and of course cake. Social stories are a staple in this house and going back to school requires a good one. Last year’s story focused on the idea that going to school was Hayley’s job just like my job was to look after her and work so I could buy her treats. This year’s will focus on the move to high school and the importance of working hard to learn about the various subjects. My social story this year will be about not drinking martinis in the school parking lot and then storming the office shouting “I’m not ready for high school”. I am thinking I may need a more intense intervention.
For the people who know me they know there is one word that comes up often in program planning. That word is advent calendar. That’s right, they are not just for Christmas anymore. I use advent calendars for everything. Potty training? Make an advent calendar. Going on a trip? You need an advent calendar for sure. For those who don’t know me so well you may be thinking "what kind of foolishness is this, has this woman spent too much time with the Christmas Wishbook" (for the record … yes!). The advent calendar idea is simply a way to count down to an event, especially an event that may have associated anxiety. For school I usually start about 5 days before but you know your own children best and may choose to have more days or less in the countdown. I have little gifts that will prepare the child for the event. In this case school, so school supplies (fun ones) are a good choice. You can use numbered gift bags or little boxes, some families go all in and make little doors in a cardboard box that their child can open each day. No matter what way you do it the idea is that your child will open a small gift each day as a way to count down to the first day of school. This pairs a positive feeling with the idea of returning to school and helps your child slowly adjust to the idea of the transition. For those parents who feel they need an advent calendar too may I suggest you get your inspiration from the inside of a mini bar. But that is a whole other blog post.
These are just some of the ideas I have tried. I’d love to hear yours. Write me quick, first day of school is coming.
A magazine I read occasionally had a feature where they would ask celebrities to fill in the blank to the sentence “ I love my __________ life”. Every time I saw it I would try to fill in the blank myself. I love my complicated life? I love my awesome life? I love my dysfunctional/ fun/ in crisis/ unexpected/ @#$%&/ amazing life?
One thing I never put in the blank was the word typical. Now I do often wonder if there is anyone living a so-called typical life out there. But if they are, I surely am not. I am a mom. It is perhaps the thing that most defines me. I have a daughter. A beautiful, vivacious, horse riding, puzzle mastering, optimist. She is going into grade ten and has Autism and OCD. I also have a son. He is our resident poet, Shakespeare authority, singer, actor and university student. His complexities come with the labels OCD, ADHD and very mild Asperger’s. I am a wife to a busy man I have been with since I was fifteen, and if I were to own up to the age on my drivers license that’s a long time. On the surface we look like a pretty regular family, one mom, one dad, a boy and a girl and a cat. As well, to fill out the group, we have a grandmother and grandfather living above the garage. That is kind of where the regular stops. Well that’s not really true, the cat is the picture of stability. But our normal is a new kind of normal that includes the daily use of words like sensory seeking, dysregulation, meltdown, and stress tolerance. In my family’s “normal” our activities are carefully planned around therapy, health, and sensory overload as apposed to social schedules.
My main job is educating, advocating for, nurturing and loving this unique family of mine. But on the side I also get the privilege of looking after some other awesome families as well. I work with families as they navigate the world of having a child with complex needs. I get to become part of their family, meet their pets, and cuddle their children. I have an awesome job!
Some days my life is riding high, perhaps one of my children or one of my “work children” accomplishes something amazing. Some days my life is a little lower, a school meltdown or a funny look from a stranger. And many days my life feels wonderful because we had a pretty ordinary day, and in a special needs family those days are treasures. All in all I’ll take the lows with the highs and all the in between. So I guess I would have to say I love my WHOLE life, even if some days a piece of cake and a sugar rimmed martini is needed to give me the strength to live another day. Tell me about your life. How would you fill in the blank?
Paulette Moore is a mother of two, wife of one, and autism consultant of many.