What you need to know…

Autism Sparkles-3

As my boy spent this last week zipping up his graduation gown and figuring out which side the tassel begins the night on, my heart has been upended in an emotional swirl-wind, reliving these last eighteen-ish years from diagnosis to crying-mess to fearful mom to bitch to grizzly-momma to functional advocate.   It’s been quite the journey.  And what I’m left with as I watched my son walk across that stage are the few things I wish I’d known in those early years.

1.  Fight:

  • If I’d made a list of what I thought I’d need back when he was first diagnosed at 18 months old, fighting is not something I would have included.  It was not even something I’d have thought necessary. Why would anyone need to fight to help a child succeed? I was not a fighter.  I was sweet and kind.  I was a helper.  I never raised my voice.  I baked cookies for everyone. I was a pleaser.  I actually cried heavily in most of those early IEP meetings. And then there is this moment, if your IEP team is not a forward thinking group of people focused solely on the child’s needs (which some most certainly are), when you realize that your child’s well being is not always going to be the school’s priority.  If it’s easy for them, they’ll most likely readily help you but if supporting your child goes against the norm or ease of their structure and funding, they will look  for the easy way out.  If supporting your child threatens their budgets, they will make excuses.  The social skills classes that get talked about but never happen.  The accommodations that make it into the official IEP but never really take place in the classroom.  The testing accommodations in the IEP that don’t get followed. The list could go on and on.  Sometimes, the only way to get your child the support that was talked about, promised, or simply needed is for you to stand up and fight for it.  Fight like your life depends on it because your child’s life and future will.

2. Be the bitch.

  • I am not a bitch. I am not.  I am sweet.  I am kind.  I will apologize not only for what I have done but I will apologize for what is not my fault as well…just to make everyone feel better.  I am not a bitch.  My son was in the fifth grade when I sat in that IEP meeting and used an “F” word for the first time.  When I told everyone in that contentious meeting that I would not allow them to “Fxxx” with my son.  It was not one of my more eloquent moments but, when a person is thrown against the proverbial wall and your child is not being supported, you’d be surprised what can come trickling loudly out of your mouth.  Sadly, this is what many schools count on.  The fact that you will NOT fight them.  They count on your kindness.  They count on you backing down.  They count on the fact that you will trust the “experts”.  That you will play nice and be kind and allow the IEP team to do what is comfortable for them and not what is always best for your child.  BE THE BITCH.  As much as it may be uncomfortable for you to step into those shoes and step up loudly, do it anyway.  Question them.  Ask uncomfortable questions like exactly WHY the services will not be offered when they are so obviously needed.  Make them explain to you why they will not serve or support your child.  Do not be condescended to.  Be firm and expect them to be upset with you and you need to BE OKAY WITH THAT.  Do not just take their word for it.  Ask for specifics, watch them get uncomfortable and keep asking anyway.  It’s okay.

3. Trust yourself.

  • Don’t let anyone, no matter how many degrees they hold or how many letters they have behind their name, convince you that you are not the expert.  YOU are the expert when it comes to your child.  Not one person knows your child or what your child needs better than you.  No teacher, no principal, no doctor…knows your child as well as you do.

4. Embrace the ugly.

  • No matter how smart you are, no matter how much you may have been a rockstar in your job, no matter how much you have it “together”, this journey will have some ugly moments…and that’s okay.  Things get ugly sometimes.  As Marilyn Monroe is reported to have said, “Sometimes good things fall apart so better things can fall together.”  I can remember some superbly ugly moments from our journey and they were awful and uncomfortable and tearful but they always came about in the middle of a transformation and the ugly moments were critical in the process.  The ugly moments were almost always the privotal moments that created the transformation.  Despite the fact that those moments are terribly uncomfortable and often painful, embrace them.  They are necessary for us to move our children into better moments.  I can remember crying uncontrollably when I received a letter from the Director of Special Services threatening to deny my son services.  I remember feeling helpless and alone and like it was me against the world.  And when the crying dried up, I got mad and I started calling everyone.  I didn’t even know where to begin so I started with a call to the Department of Education in Washington D. C.  I didn’t even know who to ask for but they were helpful and kind (and could probably hear the panicky mom-quiver in my voice).  They directed me to a before unknown to me office in California called the Office of  Procedural Safeguards and that changed everything.  I filed a complaint with them against my district.  To make a long story short, that phone call was pivotal.  After I filed my complaint, they investigated the district and the district was found out of compliance.  After that, everything changed.  The ugliness was wildly ugly but the school  district never treated us with complacency or that condescending tone ever again.  And keep in mind, I’d even gone so far as to hold meetings with the principals, teachers, Director of Special Services and our superintendent prior to filing a complaint because I wanted to figure out the problem and fix it.  Sadly, no one cared about helping my son until that state complaint was filed.

5. You won’t always be popular.

  • I remember vividly that moment when a fellow school mom called me to report that another mom (who happened to be the head of the mom’s club on our campus) wanted to know why I was suing our beloved elementary school.  A moment that, despite being untrue (I had filed the complaint with the Office of Procedural Safeguards and the school was being investigated but I was not suing anyone) still made me the most unpopular mom on campus.  And as much as I did not enjoy that feeling of alienation and isolation, I stood my ground and realized that in order to stand up for what was right and stare down a bully of a district at the time, I would have to stand alone…and that was okay.  It wasn’t a comfortable place by any means and as a single mom it absolutely enhanced my isolation, but if I was truly committed to my son and to all the kids who would come after him that deserved to be treated equally and fairly, I would have to be okay with what came next. In my case, that meant standing alone and being very unpopular with the school and with the other parents and yet coming to terms with the fact that being unpopular and being alone would be my new reality if I wanted to truly move my child forward and ensure the support he deserved.  In the end, it is what it is.  I’d like to say it’s easy but it isn’t.  I’d like to tell you everyone will love you but they won’t.  We do what we do for our children even when that means we have to embrace the ugly, come to terms with the very capable bitch within us and the fight we did not intend to have.  No matter the consequences, we stand up tall for our children because if we don’t, who will?.  Who you are and what you do for your child matters like nothing in your life ever has before so do not let anyone make you feel guilty for standing up and demanding what your child deserves.

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