Thursday, 30 August 2012

  • Why No One's Mistaking Me For Jenny McCarthy



    So I’m talking to my son's teacher today, explaining that I disagree with the school district’s decision not to give one of my boys OT (Occupational Therapy)- but that I was willing to see how things progressed, when this other mom went “Mother Warrior”  on me.

     

    "You are your son's only advocate!"

    "If you don't fight for him, who will?"

    "You should be ashamed!"

    "I know with my son, I fought tooth and nail--"

    "You need to go back and tell those people that you want--"

     

    I just got the full warrior mom smack down! lol

    In all seriousness, I know where she was coming from. I understand that feeling-- that you always need to be on high alert because time and our children are just so precious. Being an Aut mom is...unimaginably difficult. Some nights when you finally get the little ones in bed, you weep with thankfulness that the day is over, right?

    Maybe that's just me.

    People tell me all the time that I am so "on top of it." For that, I am thankful. In fact, I was once told by one of my son's behaviorists that they admire my warrior spirit. Outwardly, I smiled, but inside I threw up a little.

    I’m... a lover not a fighter. I don't fight. And I think that's the secret to any sanity (should I be deemed sane) as an Aut mom.

    Do I advocate for my two Aut boys? You betta believe it. I am quick to send a note, draft an email, make a call, request a meeting or write a letter if I feel that things are amiss in their worlds. But--

    Here’s the thing.

    I just don't have the need, or the energy, to fight all the time.

    To a warrior mom, I am sitting back doing nothing. That's just not true. Here's my "peaceful demonstration" action plan:

    I choose to trust the professionals tasked with caring for my sons. I trust that they are not achieving any sort of personal satisfaction or private gain from disagreeing with my expectations.

    I choose to trust that because they went into the education profession that they sincerely care about children and want to see them achieve their goals. It’s not the long hours, furlough days or cutbacks keeping them in the field...

    I choose to think that maybe, just maybe, they see something in my boys that fear has kept hidden from me: a greater potential that I have not yet realized. (ouch.)

    I choose to save my best energy and pour it into my husband and 3 children. I use it to produce theater, write, bake cakes, make homemade ice cream, try a new recipe or dance and spin with my family around the room. I choose not to waste it on fighting a bureaucracy unarmed.

    I KNOW, being a former early childhood educator myself, that if the educational plan is not working for the teacher it will be changed Quickly.

    And I don't sweat the small stuff. We work on motor skills and regulation at home and in ABA.

    I chat with my son's teachers and stay updated on his progress.

    I monitor and if I NEED to request a change at a later date I have data and anecdotal notes (and not just my feelings) to back up my request. (I have a behaviorist who is always saying "you can't argue with data." She's right.)

     

    I keep my strength up for the real battles. Mine are:

    Fatigue.

    Vocal stimming and pacing at 3 a.m.

    Spinning.

    Elopement.

    Keeping the boys in their seat belts while I’m driving.

    Protecting my couches from further destruction.

    Potty training.

    Staying positive/grounded/encouraged.

    Not becoming one of the 80% of marriages that dissolve after the birth of a special needs child.

     

    Warrior mom? No.

    At peace mom- definitely.

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Comments (5)

  • RaisingAspergersKids

    One word of advice...you need to stay on top of the professionals. Simply because someone has an education does not mean they know what they are doing. Plus, in my twenty year experience, the person who sees potential in my autistic children happen to be me and definitely not the professionals. If I had listened to the "professionals" my children would be warehoused somewhere instead of applying to graduate school.

    Don't be a warrior-mother is that gives you peace of mind. But the only one who is truly looking out for your children's welfare is you and you alone.
  • SPetre

    Hi Marshelle,
    I came across your blog and I did really enjoy it. It must take a lot to be so honest and open about your experiences!

    I do want to share these blogs with you though, as they both relate to your last line about the 80% divorce rate myth:

    http://bethesdablog.wordpress.com/2012/07/31/families-and-disability/
    http://bethesdablog.wordpress.com/2012/02/28/divorce-rates-among-families-of-children-with-disabilities/

    There's also a research paper from Dr. Sigan Hartley of the Waisman Center at the University of Wisconsin Madison. It speaks specifically to marital quality of families of children with autism. Here's the link if you just want to see it directly:

    http://bethesdainstitute.org/document.doc?id=448

    I hope that you'll find these helpful and that they'll debunk a lot of misinformation that is out there. Maybe you'll even want to share these with your readers in a future blog! Again, great work on your blog- it was a really good read. Please feel free to contact me with any questions or follow-up.

    Thank you so much!

    Seth Petre
    Bethesda Institute
    Technology and Marketing Specialist
    seth.petre@mailblc.org
  • anonymous

    I had to fight in the beginning of my ASD sons elementary education, now that he's been in school from Kindergarten to fifth grade now and a change in school administration things are going smoothly.  I always hated fighting the school, but, if I didn't do it early on the services he needed wouldn't have gotten met.  I went as far as to get a copy of the Special Education law book and brought it to every IEP because the school administration wouldn't follow their own laws, or skirt around them when they could.

    I love the new administration.  Meetings are so easy now, we talk about the strengths and weaknesses of my son and make a plan that works for the teachers, speech therapist, and occupational therapist, and of course my son.  
    I say congratulations for your approach with the school, and having the ability to trust the people working with your child.  
  • anonymous

    I so agree with this idea that fighting all the time isn't a healthy thing.  We DO have to be strong for our kids (ALL the kids in the family), and that means also making sure that you keep your own mind and health strong.  Fighting all the time is very stressful and not at all a good way of keeping your own mental health in check.  If YOU are not in a good place, you will not be able to take care of your child or anyone else in your life.  I am a "warrior" mom when I have to be, but know when to pick my battles.  There were times when I fought for things that, in the end, turned out not to be the best thing for my son.  I was so used to fighting for everything, that I lost sight of what was right and logically fitting for him.  I think there is a misconception among women these days that if we're not "fighting" were not strong - which just isn't true.  The schools aren't always the best place to voice your gripes either.  They actually DO have budget and staffing constraints that may not allow for every wish that we parents express. Sometimes meeting with your state legislators or even local government officials is a more effective and efficient way to get to the heart of the problem.
  • Endrath@xanga

    As an educator, I will just say that showing up to my classroom with a sword on your back is a terrible, terrible plan.  While I love dialogues with parents, I love them when they are dialogues.  When a parent walks into my room with the blanket assumption I am an idiot, incompetent, not special enough, not sympathetic enough, or unqualified in that manner... well, it takes a huge amount of effort to sort through that emotion to actually get to the heart of the problem.  If I am communicating with the parent, I need to know the problem to be solved, and truthfully, I want to solve it.  Running high on emotion before even defining the problem clearly makes a simple resolution effort into a tiresome ordeal... and remember, I have somewhere between 29 and 149 other kids to deal with that day.

    My thanks for giving your educators some credit.  At the end of the day, we all want the same thing... what is best for the child.  Unless you disbelieve that to be true (and I hope this situation never arises), then working together with an educator, as a friendly person with invaluable knowledge of the student, is worth a million times more than trying to rewrite the Crusades through the halls of our elementaries.

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