Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Sunday, May 19, 2013

Elopement - Drowning: A CALL TO ACTION!

So, to quote the statistics that I have seen traveling around Facebook today: 48% of kids with autism wander (elope).  Either 91% or 92% of those end in drownings.  These are not numbers - they are souls...

As I have mentioned in previous posts, I am a swim instructor.  I am seeing more and more students with subtle and blatant special needs because I am not secretive about my child's special needs.  I understand that my "expertise" is based on my Red Cross Water Safety Instructor training, my parenting insights, and my years of teaching experience.  My degree is in American History (just to be clear - I am NOT claiming more training than that).  I understand that my experience is inherently limited by the individuals I have had the opportunity to teach and learn from and may not be a numerically significant data sample.  I also understand that I work hard to interface with parents and be observant, and I am seeing changed behaviors and hearing parents that see skills improvement in their children after I teach them.  I am convinced I am doing something right and something important.

One local Autism support group (local to me) asked if there were any swim lessons specifically for special needs children, to which there is not yet any affirmative response.  As a parent of a "special needs" kids, my research has only ever uncovered private lessons (at least around me).  The complaints have always been that they are cost prohibitive (as most therapies and supports are since they are either not "educationally necessary", or not covered by insurance because they are "unproven") or that it is difficult to keep a consistent instructor.

I STAND IN A PLACE OF KNOWLEDGE AND FEEL COMPELLED TO ACT!  The loss of 3 children in one week is heart wrenching.  The reaction of "mainstream" media is accusatory and misleading.  Not only does the public need to be educated about the realities of Autism, the "public" needs to be educated about how it plays a supporting role in safety!! AND AUTISM PARENTS NEED TO BE ARMED WITH THE KNOWLEDGE THEY NEED TO TEACH CHILDREN.

1) I am going to go directly to my supervisors tomorrow and discuss how to create/ start a "special needs" swim lesson.  I am not convinced it will "make money" this year, but costs can also be measured in lives.  I am honored to work at a 4-H center - to be associated with an EDUCATIONAL organization.  I am convinced this is the right thing to do, and the right time to do it.

2) Adults AND children need to start having conversations about swimming and sensory experiences, and have access to that knowledge.  Swimming can not be seen as a pursuit/ sport of the "middle class".  Parents need to feel empowered to teach their child these life saving skills! The Red Cross originally established its water safety programming BECAUSE most drownings are preventable if people are knowledgeable!  People need to have access to supervised swimming experiences so that they have the opportunity to learn and practice water safe behaviors.  Look here for an earlier blog I wrote on the topic.  There are LOTS of ways you, at home, your family, can address that draw to water, and the disorientation it brings.

3) Communities need to start taking responsibility for shared safety!  Too often the parents of autistic children feel judged and accused - as if there is a direct correlation between some "epic parenting fail" and the child's "outrageous" behavior.  As amazing as it may seem to some people - all human beings come equipped with minds, no matter their age, and don't need your permission to use it.  The argument is often batted about that communities must pay taxes for schools because the entire community is responsible for taking care of it's children.  That idea does NOT stop at the automatic deduction.  I am counting on my community to keep my roads safe, to not set a fire to their yard, to stay home when sick... WE ALL SHARE RESPONSIBILITY FOR SAFETY!  It truly "takes a village" - because not only does my child need to learn to respect the authority of other adults - my child DESERVES to have other definitions of adulthood besides me. I am not perfect, cannot be perfect.  I sincerely hope that my child never feels compelled to carry my baggage, and I desperately hope that I can show my child enough examples of humanity/ adulthood that he/she actively CHOOSES the person they become.  It IS the responsibility of ALL the adults in the Walmart parking lot to watch for running children, to (patiently) remind them that it is unsafe, honor the rules about stopping for pedestrians and using cross walks, and MODEL SAFE BEHAVIORS.  It IS the responsibility of ALL adults to be aware of what is going on around them.  As a lifeguard, I am supposed to watch people.  It does not take long to see which kid on the playground goes with which adult, or to see that one is looking for the other.  I am NOT violating a parent's rights if I ask a kid where their "assigned grown-up" is.  I am NOT violating a parent's rights by stopping that toddler from dashing out the door.  I am NOT violating a parent's rights if I remind a child how to use a piece of equipment safety.  

Cuz, you know what? I am gonna need that help too.  My kid is a bolter, a runner, and we have lost him before.  And I DO need your help reminding him that he needs to stay with his assigned grown-up.  I too have had the unjust call of "inadequate parent" thrust before me, and had to find the strength to stop that ignorance from compounding my guilt.  

We have specific strategies that we use.  They might work for others, or they might not.  Cuz one kid with autism is just one kid with autism, and the resulting behaviors vary greatly.  I'll list some ways I have tried to help myself and help him help himself, just in case they are helpful,  This is as much a selfish effort to show I am trying hard enough as it is a hope to offer suggestion to any who need it.  I am sure that families of all 3 children that died this week used similar strategies...

1) outrageous clothes.  When they were little, I ALWAYS dressed them in red or florescent orange when we went out.  Not only does that make them visible to me from across a room, it makes them memorable to anyone who glances at them.  If they get away from me, people will be more apt to remember them, and for that exact reason, "bad guys" will be less likely to target them.  When we went to NYC (ages 4 & 6), I literally put rolls and rolls of curly gift ribbon all over their head (hair ribbons) and bodies (backpacks, shoe laces, back of jackets).  ridiculous? maybe, memorable? yes.  We ALWAYS dress as dragons at the Rennaisance Festival -with LOTS of sparkly fabric.  Twice we have lost him in the crowds as he meandered away to look at some interesting thing.  The first year I heard a bystander tell a security guard, "yeah! we saw this kid.. the whole family is dressed like him!"  The second time, as soon as we spoke to a performer/ staff member - they brought him to us, because we made SURE to show his "cool" costume to every performer we saw all day long.  We made our selves an obvious presence.  (this is really only useful if your kid will wear clothes - so for us it was only like 60% of the time until recently...)

2) over talking.  This is an auditory processing thing, and eventually a self advocacy thing.  Talking through EVERY SINGLE PROCESS, ALL THE TIME...  I often find I am doing it pretty loudly too, so that other adults are aware of my expectations for his/ her behavior.  And usually it makes it pretty clear that I, and my child, need that extra loving support.  "I am asking you to keep your hand on the cart in the grocery store.  Please look at the carts around you and try to stay on your side.  Those people want to reach the shelves too."  "You must hold my hand in the parking lot. I am taller than you, so cars can see me better."  "The people who own the store may get very concerned that you are not careful with things we aren't buying.  You may not touch it without asking"  "I see this person is trying to read quietly, so can you please respect their space and play on the other side."  "I would like you to stand away from the curb so that you do not fall into the street."  It is pretty annoying, but effective... and you get used to it eventually.  This ties into verbal count downs for us.  I am standing at the end of the toy aisle, "when I get to 10, it will be time to move to the next row..."

3) front loading.  Way explaining before doing anything.  Being sure to "practice" every activity.  Visit the dentist office before the appointment.  Making a fast trip to the mall just to read the directory, and then going another time to see a store.  Asking for permission to visit a space before an event to find all the bathrooms.  Explaining what it should look like if I am being a good audience member.  Explaining when it is time to listen (sit quietly) and when it is time to move around.  And this ties into visual cues ("you have to stay on the green part of the rug") and schedules/ lists ("after the lights come back on there will be lots of clapping, and then you can get up from your seat") for us.

4)correcting with validation.  That is REALLY hard when you are scared, but trying to understand what the kid was thinking, and show where the "disconnect" was in the decision making.  We lost him last winter, and had to really work to explain why we would be worried, so could he please be more thoughtful - and ASK before he goes out?  Once he heard dad say he was going to the grocery store.  He came out of the bathroom and couldn't find daddy, so he left to go to the grocery store.  We saw him outside, he came back in - and determined he didn't think to check the basement...  I understand that autism means he thinks differently, but unless we all communicate our thoughts processes, respect each other's intelligence, then we all just wallow in fear.

5) observation.  I have found that if I give him more room, he is more willing to push himself, so I spend lots of time actually just sitting back and watching him.  I also trust the dog to be watching.  Our dog has always alerted when the kids wander too far or a strange adult approaches them.  I always felt bad, like I was wasting time, but it so pays off to just really watch them, and how they interact with their environment.  I think all parents do that, I just think we get in the habit if doing it without consciousness - like a long car drive.

6) prayer.  He still gets away from us - especially now that he is old enough to go to boy bathrooms.  Ultimately - like every other autism parent - I am often just praying that his honed interest didn't distract him so much he is being unsafe...

But God's purposes, actions, do not always match ours.  Loss is horrific.  While I personally believe that everything happens for a reason, I also KNOW how hard it is to accept that, to not be angry with God.  Especially when that loss is compounded by ridiculous close-minded misleading accusations.

Monday, May 13, 2013

Mother's Day

Every year, my father sends me a flowering plant.  He has a relationship with the florist in my town, and he calls and asks them to send me a "hardy" plant with flowers.  He knows that I am a long time terror to plants everywhere.  Puppies and babies, I'm good, but plants are a whole other story.  The carcasses of potted plants litter my porch and kitchen table:  the hibiscus I killed this winter, the hanging plant I forgot to water, the succulent made it a good 6 months, but winter took away the air moisture.

My father wants to help me fill my life with beauty.  His wish for me is to have lasting beauty and joy, to remind me how much he loves me and honors my work as a mother all year long.  He gets these plants for my mother, my godmothers, and for grandmothers when they were alive.  He seeks to SHOW us that he loves us, thinks of us, and we are a part of God's beauty, celebrating the power to begin new life.

The card he sends with my flowers has never been signed from him.  He signs it, "From the in-laws and the out-laws."  He has always credited this annual gift from my entire family, both sides. I know that the ones he sends to my godmothers he signs from my brother & I and the lady's biological children.

Now that there are granddaughters, my father also sends a single flower to each of them on mother's day as well.  It is admittedly a token, but none-the-less honors the woman they will each become.  I think he assumes they will eventually be mothers only because is his world, life is simply not complete without the full circle of generations.  His children have been his greatest treasure, and his greatest hope is that his children and grandchildren will know an equivalent joy. [We have a great story about the first one my daughter ever got. she shook it with joy so much, she lost all the petals within 3 minutes of receiving it.  She proudly carried the stem all day!]

It is a small (and somewhat futile) token to send flowers/ plants - but I am so incredibly thankful EVERY time because I understand what he wishes to share.

This year, I did not have my children with me for mother's day.  My work schedule is full, long and hectic (overnight camps/ trainings, staffing emergencies, sudden call-ins), so my children have gone to spend the spring with my folks.  My mother gets my children for mother's day.  This year they slept, because they went to a festival the day before, and my mother did not get to go out or have breakfast in bed served to her [quite frankly she would flip out if my kids made that kind of mess in her kitchen.  We tried when we were little and she has never forgiven us for giving her Garlic Eggs].  I am confident that later this week, when my father feels she is rested enough, they will all go out for dinner.  She told me she enjoyed working in the garden with the kids, teaching them, building memories with them, loving them.

I missed my kids. I was pretty sad all weekend about it - but I was also working.  I put in 7 - 9 hours each day.  I could not have spent it with them anyhow.  And actually - we went out as a family a few weeks ago because we knew we couldn't go this year.  Our little tradition is to go to  a local winery and picnic.  We have tried to go to a different winery every year so that my children can keep making their world bigger. [um - that's kinda my idea]  Being apart from them made me realize just how much I love them, just how really cool they are, and what good memories we have.  I am lucky that my folks are willing and able to keep my kids for a few weeks - but even luckier to have kids in the first place.

My mother-in-law is gravely ill.  Mother's Day was also filled with worried texts and calls - keeping track of her very slow progress after 2 more strokes this month.  My husband is preparing his heart, his mind, for the inevitable.  His sisters live much closer than we do and are bearing the brunt of the distress, but being Aspie himself, he doesn't deal with change well and is having a hard time thinking of anything he can do to help the situation.  While praying for my mother-in-law and my sisters-in-law, it drove home how fragile this balance between building memories and letting go is...  Watching other moms on Mother's Day reminded me how much I already miss their infancy and toddler-hood.  I can only imagine what my mother and mother-in-law feel, and I can only imagine what my sisters-in-law feel knowing such an important resource is going from them...

Seeing my husband deal with the changing relationship there has really made me think about how and why I love him, and how and why I love my son.  I have realized that every time I look at my son, I see the curious toddler, the smiling infant.  His mother must see the same of him [she has started calling our son by my husband's name because the strokes have taken away some memory].  I cannot see my husband that way.  I have decided that a mother overlooks a son's adult behaviors because she always sees the boy within, and a wife overlooks the childish behaviors because she sees the man within. 

My husband worked VERY hard to honor me despite my work schedule.  We went for ice cream and a short walk in the woods.  We remembered when we first met, and when the kids were born, and spoke about their personalities and futures.  We just enjoyed each other and our memories, and looking forward to more memories.

And I was reminded that - being a mom is NEVER alone.  Not just the "you will never pee by yourself alone again" kind of never alone - but also the "you can't do this by yourself" kind of never alone.  When the kids were infants, super littles, there was such a sense of isolation, of overwhelming separation from the universe.  I had a VERY VERY hard time.  The Truth is that you kinda need it - no one can really help you figure out nursing, and you have to build that set of  expectations about "normal" for your specific family, and you need create that dynamic of "safety" [what do you feel safe about them doing, what do you feel safe doing with them] from your solitary perspective.  I am sure that society adds to that sense of isolation [with BS about public breast feeding and social guilt of parenting from information instead of the gut], but even Maria Montessori identified the way Nature builds a "bubble" around new moms to let them bond with babes.  

The process of diagnosis for Autism has been a huge part of my Self Parable.  It has been a cataclysmic event to Teach me what I needed to hear.  The lesson I have ALWAYS shared (MY insight) is that I can not do this alone.  I had to learn that I not only need others to help me be a mom, but both my children and I deserve that kind of help.  It does take a village.  I am pretty sure that it will take more than one village for us...

And THAT is what this Mother's Day brought me:  It is NOT about "Mom".  It is about the Mother in each of us.  There are many women I work with, godmothers to my children, who have made the choice to not have families [and there are MANY people who will tell you that teaching is the BEST birth control.  It is very hard to be fair to your own kids when so much of your emotional energy goes to caring for other people's.  Part of the reason my kids go away during this time of year is to protect them from my emotional exhaustion.] - yet they all help love my children.   They get gifts for them when they hurt, and they babysit and go to the park, and they ask me about the kids every day, and they help me to talk out my parenting decisions, provide insight into my fears, and protect me from parenting in a vacuum.  I CAN NOT DO THIS ALONE.  I absolutely need my girl friends, and my husband, and my parents, and my in-laws, and our scout communities to help me equip, inform and love my children.

THIS Mother's Day - I want to honor the Mom in EVERYONE, male or female, young or old, biological parent or emotional parent, overt or covert, willing or reluctant, inspired or fearful... there is a piece inside EVERY one that nurtures, provides, cares, cleans, sees the connection between the child and the adult.  I celebrate that we have it, and THANK all who express it!

I thought very hard about my daughter this weekend too.  I also want to honor the Mom in her.  Not just because she is very mothering [taking care of her brother, to the point of bossy and enabling], but because she deserves to know before her time of isolation [if she has one] that she isn't really alone, ever.  I see the shining beauty she brings the world, and I know that time will bring that love and joy depth and texture.  I SO look forward to knowing the woman she will become.  The quote that made me think of her this weekend [I saw on FB] was to the effect of, "Celebrate your uniqueness; don't get yourself tripped up playing dress up in another woman's heels"

A little belated, but very heart felt "Happy Mother's Day" to all!