Life, Plot Twists, and Other Bits

I realized tonight it’s been 4 years since I last wrote anything here.  While in the grand scheme of things that may not seem like much, it feels like a lifetime right now.  Not long after my last post, my dad passed away unexpectedly turning all our lives upside down.  I found myself grieving while struggling to keep my kids going and make ends meet as a single parent.  Yes, there is more to this than I have put on paper. But sometimes, even in this era of oversharing, there are somethings that are meant to be kept private.

Where was I?  Oh, yes, leaving the unwelcome plot twist behind.

I left off with the fight to get my A into an appropriate pre-K setting.  Won that one.  She has attended the same school as her brother for 4 years now and the difference is amazing.  Being in a blended classroom with an ESE pre-K teacher made a world of difference for her.  Granted, we had a number of months with her hiding in a cubby for most of the day or screaming under a table, but we got past that before kindergarten!  Throughout pre-K and kindergarten, A continued to grow by leaps and bounds.   Then we hit 1st grade.

Hear that squealing sound?  That would be the brakes on the wheel of progress.

Despite having been through therapy for anxiety and the continued work at home, 1st grade has been a difficult year.  Children with SPD/anxiety/OCD/pick a set of letters tend to like their routine and REALLY don’t like change.  A definitely fits that category.  Between the expectation that these 6 year olds can sit still and write a multi-paragraph essay and the lack of recess most days, A has not done well.  Oh, don’t get me wrong,  academically she is doing fantastic.  Emotionally however, the kid is a wreck.

I now have the dubious distinction of being the parent of a runner.  Yep, my child was that child who runs out of the classroom.  Although, she does give fair warning before she leaves.  No, really!  She packs her bag, announces, “I can’t take this anymore.  I’m done!” and then walks/runs out of the room.  Now, before you all want to start playing criticize the teacher let me say one thing.

STOP!  A has an amazing teacher who has gone out of her way to work with us to make sure that A is successful, despite not getting support from the district and struggling in the classroom environment.  She gives A breaks when she needs them, allows her to have fidgets, and sends home her work if she shuts down and won’t do it in class.  And, before anyone says, “Well her IEP (or 504) should have all that and legally they have to follow it.”  Please know that this teacher did all this before A’s 504 was amended to include all her accommodations.  This teacher, and several of her teammates, have gone above and beyond and for that I can never thank them enough.  We (and by we I mean myself, her teachers, and a few other staff members at the school) are still struggling to get A through each day.  Some days are hard, others are easy.

Thankfully, we are seeing a light at the end of this particular tunnel.  Of course, that light just means additional letters for A’s new diagnoses.  After much paperwork, various behavioral and developmental inventories and questionnaires, A has some new letters to add to her list.  Letters like, ADHD and ASD .  (cue horror music)  Yep.  She has those letters, ASD.  (Okay, you can turn off the mental soundtrack now.)  What this means for the future, I don’t exactly know yet.  We still have a round of testing to do next month to attempt to figure out approximately where A falls on the spectrum.  All the doctor could tell us for now is that she is definitely high functioning and it will become more challenging as she gets older to keep her from getting bored in school because she is “gifted” as well.  Oh well.  All we can do is take it one step at a time.

On the upside, at least I can never say my life is boring!

I know this post was rather rambling and not at all my best writing, but thanks for sticking it out and staying with me this far.  Future posts will most likely be much easier to follow…

 

 

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An Open Letter to School District Administration Personnel

Dear School District Administration Personnel,

Let me start this by stating that I understand that you have a difficult job.  There are few of you and many students with many different issues.  I understand there are certain rules in place to help things flow smoothly and that, at times, you follow as though they are written in stone.  But even stone must change with time.

I recently went through the IEP process with my daughter who is 3.  She lives with Sensory Integration Dysfunction (or disorder, if you prefer).  Diagnosed at 15 months and in therapy since she was 13 months old, she has come a long way but still has a long way to go.

During the course of evaluations and subsequent reports, the evaluators did their best to put together a “snapshot” of my child and her needs.  Regrettably, it fell short.  When we came to the IEP meeting, all the districts specialists who had been in contact with my daughter were there and were prepared, as I was, to put together an education plan to help my daughter succeed.    Unfortunately, I felt that they chose to ignore or brush aside their most valuable asset when it came to my child’s needs.  Me.

Yes, I know my child better than anyone.  I have spent countless hours working with her at home and in therapy.  I am constantly inventing new ways to work with her and to help her learn to cope with the world around her.  I have held her as she cried for no apparent reason and cheered her many tries and accomplishments as she has grown.  I have guided her through her ups and downs and gave her the words and tools she needed to learn, cope, and grow.

I am her mother, but I am also her best and only advocate.  I will not sit meekly by and accept that someone else, based on a snapshot report, can accurately know my child.  Even her therapists that have been working with her for almost 2 years now ask for and listen to my input.

I will not be brushed aside in favor of one size fits all rules and guidelines.  We are all different, some more so than others.  My daughter may be speech impaired, but it is because of motor planning difficulties which are a result of the sensory dysfunction which impacts her interactions with the rest of the world around her, including her peers.  It is time to look at the whole child, not just the parts.

My daughter has a right to a free and appropriate public education and I will not let you handicap her by ignoring her needs and rights under IDEA.

Yes, I am angry.  Yes, I feel stone-walled, ignored, and brushed aside.  But I will not allow it to continue.  I know I am not the only one out there who feels marginalized by the system.  Maybe no one else has, but I am and I will continue to stand up and make my voice heard.

Sincerely,

An Active, Involved, and Concerned Parent