Parent Advocacy Team

parents helping other parents advocate for their special needs children

Gearing Up For School

There are four boys at my house, so gearing up for school is serious business at our house.  Like many families, we start adjusting our bedtime and wake up times in the week prior to school in the hope that it won’t be such a shock to our systems on Monday morning.  We also start assembling supplies and back packs.

For my special needs kiddo, I get out our most recent IEP and review after the long summer.  A critical  back to school accommodation we have in our IEP is a meeting with my son’s teachers and SpEd team prior to school starting.  I hate being that parent that says “welcome back” with an email at the start of the inservice week, but experience has taught us (all too well) that this is crucial.  My son attends, so he can see his teachers and vice-versa.  This is also my opportunity to swap contact information with everyone.  Teachers are overwhelmed with all that they need to do to prepare for their students, all the while being pulled into endless meetings, training and such.  I am respectful of that and keep the meeting to 30 minutes or less.  The meeting also serves to give a Cliff Notes version of what they may expect in the upcoming year.  My son is fulling mainstreamed, and most teachers have barely reviewed their SpEd students IEP’s before the first day IF they have even been given to the teachers yet.  So it’s a quick prep of his IEP- of what preferential seating might look like for an Aspie versus a dyslexic student for example. Reminding them that kids on the spectrum don’t usually sustain eye contact when you talk to them. Informing them of stimming behaviors or signs of agitation or frustration. I also bring a sample of my son’s handwriting for the teachers to see.  It is also a time for the SpEd team to share strategies that are helpful with the teachers, or to discuss the social/behavior goals my son is working on like engaging in reciprocal conversation and reducing hoarding behavior, thus allowing for a stream-lined and proactive approach to the start of the school year.  When the meeting is over, my son and I walk his schedule and review what his day will look like on the first day of school.

In a perfect world everyone is well trained, receptive and on board. That being said, it is an opportunity to size up the teachers.  The questions they ask, their body language and overall interaction can speak volumes as to how things will go…after enough years and bad experiences, you get pretty good at spotting the ones who are unwilling to drink the Kool-Aid.  I always follow up the meeting with an email thanking everyone  for being part of the team, and to utilize the knowledge that each of us can offer the other.  I know this reminder seems condescending, but the staff who are not well versed with kids on the spectrum, will take a “my way or the highway” mentality and will not reach out to the the experts who can help them in the classroom.  In the secondary setting this is especially true, as teachers often operate independently and don’t ask for help until things are seconds away from critical mass….by then it can be too late, and the person they reach out to is the principal.  I include all the teachers in my email, even if they were not in attendance.  I give them my contact information again as well as the Special Education contacts who can be helpful.  I keep my emails short, sweet, and professional and a recap of things discussed in the meeting…not only for those who couldn’t be there, but as documentation should there be problems down the road.  I can not emphasize this enough….if you have a face to face conversation or a phone call, always, ALWAYS, follow up with a quick email to the person just outlining what you understood from the meeting or phone call.

Documentation will be an upcoming blog topic that is near and dear to my heart.

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Guilt Trippin’ Part 1

Parenting doesn’t come with an instruction manual, we have all heard that.  For most new parents, it is a stressful ride of cherished memories and second guesses.  A true lesson in delayed gratification.  When you have a special needs child, it is amplified, like stress on steroids.  Once you get the diagnosis, you feel like you can not get the information in your head fast enough….you become an information junkie.  It takes a physical, as well as emotional, toll on you and those around you.  And then the guilt sets in….

In the beginning, we knew none of this.  We had a premature rupture of the membrane (or PROM), and I was admitted to hospital for bed rest.  I was induced a month early, after I began to run a fever.  Chris was a big kid on the NICU block at 6lbs 1oz where he was placed as a precaution as a result of my infection.  I am thankful that we made the decision early on in my pregnancy to have my delivery in Houston, rather than the small town where we lived at the time.  I was discharged about two days after delivery, but my son would stay in the NICU for three more days.  It is a strange feeling to come home without your child.  I have no real reason to whine about it, as there are mothers and newborns who have dire medical issues and rise to great strength in the face of unimaginable challenges.  Once home, I began to run a fever again, despite being on antibiotics.  I thought I was going to end up as a asterisk next to a statistic for a fatality related to childbed fever or some such nonsense!  My antibiotics were changed and I began to feel a little better, but I felt true relief when the NICU doctor called to say that my son would be discharged as soon as our pediatrician verified that my son would be monitored for his elevated bilirubin count since it was the weekend.  We rented the “Bili-blanket” equipment from the same place we rented the industrial grade Medela pump that had now become part of the nursery decor.

After the detour of premature delivery, five days in the NICU, and my trip to the ER, we finally rocked serenely to sleep in the perfect nursery with the perfect baby.  It was not the “birth plan” I had “expected” as recommended in the pregnancy book, but it was perfect none the less.  Little did I know, that Murphy would become a permanent fixture in my life…Murphy’s Law that is.  A week after getting home my unexplained fever finally got explained in the form of CHICKEN POX, and at age 20 days, my son also got it.  Murphy showed up again, but with it came the mixed blessing that at least my newborn who looked miserable at that moment didn’t contract chicken pox while in-utero.

Our first year was punctuated by little anomalies that seemed innocuous and easily explainable.  Every time something seems out of place, the doctors and nurses at the clinic would tell me we need to account for his pre-maturity…extra long bout of colic, sleep apnea that was normal if his nail beds didn’t turn blue and he resumed breathing within 25 seconds, recurrent body spasms that looked like seizing in miniature, and so on.  Nothing seemed severe, or long-term and always went away when you factored in extra time for his early birth.  There were no pervasive developmental delays, no “a-ha!” moments, no obvious signs of anything troubling.  Not even a huge convulsive episode at age two and subsequent EEG would yield a smoking gun.  It would be five years before ADHD was brought up, and ten years before autism , Asperger’s Syndrome to be more specific, would enter our vocabulary.  By that time, guilt, regret, and anger would do a number on me, that I am only just now learning to let go.

By age 5, my eldest was extremely active, he was also very hard to discipline.  He was (and still is) a sweet and very intelligent child, but he really didn’t want to have anything to do with impulse control or time outs.  He seemed to always weigh risk versus return on any given activity.  He figured out every child safety device, harness, car seat etc.  He took my husband’s ohm meter apart and re-assembled it again.  By first grade, he made a home made fire extinguisher with baking soda and vinegar in 2 separate containers that mixed together when you shook them.  The problem was also that he was unable to sit still in school, he didn’t seem to want to listen and follow directions, he would be rolling around the floor or under the desk…The folks at the small church school he was attending approached us about testing him for ADHD.  My gut told me there was something more going on, but I couldn’t put my finger on it.  For about a year, from Kindergarten to 1st grade, we tried the Feingold Diet to no avail before finally starting him on ADHD medication at the end of 1st grade.  It was not a decision that I took lightly, and I hated the thought of him being on such drugs; I still do.  My husband and I had a difficult time agreeing on the best methods of dealing with it, with the best parenting strategies for all three of our sons.  We were both in the midst of our own identity crises.  Adding to the pressure within our immediate family, were the unsolicited opinions of school teachers, friends and other family members, some of whom did not have any children of their own.  Our emotional plates were full, my husband and I were talking less and fighting more.  My husband decided to start his own law practice and kept his fears and insecurities from me.  I had gone back to teaching full time and was struggling to live up to that dangerous myth of “supermom”.   Ignoring problems does not make them disappear, no matter how hard we may wish for it.  We were growing apart, and anger and resentment became a part of our daily interactions.  He didn’t like that my friends were my confidants and I felt the same way about his sister being his confidant.  We tried couples therapy, but I had had enough of feeling like I was not an equal parent and partner in the relationship.  It’s a funny thing about communication,  when you find confidants outside the relationship, then you become less likely to be confidants to each other.  I filed for divorce. That action has carried with it waves upon waves of guilt.  Two months after I filed, we actually started to communicate again.  We shut out the damaging influence of outside confidants and began to finally focus on repairing our marriage and helping our sons, but especially Chris.   Then in an instant it was all gone.  A police officer came to my class room door to escort me to the local hospital where I would find out about the automobile accident that took my husband’s life and would leave me a widow at 34 with three boys aged 7, 5, and 2.

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Education Resources

Education Resources

Disability Rights offers so much on their website, but this specific link is for the IDEA manual for parents and students.  A “Must Read” for anyone advocating for a child in the public school system!!

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Blogging Newbie

So as the title implies, I am a blogging newbie…  I could go with the stream of consciousness methodology, but I feel there needs to be a general plan here.  After spending several days debating whether I should ease in to the water or just jump in, I have decided on the canon ball! My oldest was not formally diagnosed as special needs until he was in 5th grade.  I had tried to bring attention to his struggles in 3rd and 4th grades to no avail.  The experiences we had with school personnel were nothing short of cruel and traumatic shrouded in a thick fog of surrealism.  I did not trust my gut, my gift from mother nature- maternal instinct.  Thereby forgoing educating myself in my blind trust of profession peers who did not deserve such faith.  Yet, parents do this everyday with our public schools…we defer to their knowledge and expertise.  Some are worthy of that gift of trust, but many are no better than snake oil charmers!

This blog is about mine and my son’s experiences navigating the often turbulent waters of special education.  Some might disagree with my memories.  I have the emails, and they can get their own blog!  This blog is also a platform for parents to empower other parents who are advocating on behalf of their own special needs child(ren).  I am not a special education legal scholar, nor do I claim to be.  I felt horribly ill-equipped when I began this journey five years ago, and I’m a teacher!  I wonder if I can help others, share with others, and make our own handbook since most school don’t want to share theirs.  Schools have a “Don’t Ask; Don’t Tell” policy of their own.  If they (parents) don’t know, then we (schools) don’t tell!   As the School House Rock theme song goes….Knowledge is Power”!

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For whom I advocate

For whom I advocate

Self Portrait – Chris, age 13

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