I’ve always had a deep respect for parents of special needs children. The appointments, the specialists, the paperwork, the advocacy, PPTs/IEPs/504s and the rest of the acronyms that could be their own language…and that doesn’t even begin to touch parenting the child and whatever individual needs that may be at play. I’ve never been an official member of the “club”, though I’ve seen all of this from the other side from having worked in the field of special education.
But then one day, not too long ago, it hit me. An ‘aha moment’ of sorts but a bit less ‘eureka’ and a bit more head-swirling and nausea. No need to admire special needs moms from a distance any longer…I think I may be one of you.
My son is struggling academically this year. He has never been a high academic achiever, but he is engaged, curious, and has grown on his own curve. But as I looked through his homework and schoolwork that had come home in his backpack one Thursday afternoon, it struck me that “his own curve” was just not cutting it any more. The struggles used to be limited to reading (which he receives intervention for – both school and private) but now it seems to be pervasive across subjects. Every school year we hoped it would be the one where everything would just click. But looking at those papers, seeing my son struggle through hour 2 of an exercise designed to take 30 minutes, with a pit in my stomach, I just knew. It’s not going to click. There is something more here.
The next couple weeks were a blur. Long conversations with my spouse, texts to friends who have been down this path before, or who are in the ‘biz’, calls to the pediatrician, and eventually, the formal referral to the school.
“I can’t concentrate on anything and feel on the verge of tears. Are we overreacting? Is this real??”
“Ugh. I just feel really stressed about getting this all figured out this year before we switch schools for middle school – and guilty that I’ve kicked the can down the road and not pursued it sooner.”
“I reached out to the school to request testing to determine if there is an underlying issue with the reading and while the teacher agreed this would be appropriate she also, nearly immediately, expressed concern over his “disorganization”. I know what that is code for…”
“This isn’t the first time a teacher has suggested he may have ADHD, but to be perfectly honest, I’ve prickled at the idea. I know the statistics around the ADHD diagnosis and young boys. I don’t want him to fall victim to a biased and overused diagnosis. He’s a social, high-energy kid and I’ve never seen anything wrong with that.”
“I really don’t know what to do 🙁 ”
“It breaks my heart to see him struggle, and the resulting effect on his self esteem, and I feel like the “real world” is right around the corner waiting to chew him up and spit him out.”
“It’s so different being on this side. It is just so different when it is your kid.”
“PPT scheduled for next week. School agrees there are serious deficits and SPED likely needed. If they see it too, why the hell am I the one raising this issue instead of them??”
“I talked to him. He said he feels stupid all the time. I just hugged him and changed the subject. I didn’t want him to see me cry.”
“I’m finding myself caught between my big social principals (“too many diagnosed/medicated kids!” “too much testing!” “too much sitting!” “education system doesn’t fit the needs of our children!”) and my overwhelming desire to do whatever I can to help MY kid be happy in this world (however disgruntled I may be with it).”
“Thanks for getting it.”
“He did great on his homework, then we went for a really nice walk and talked. I think we’re going to be okay.”
I’m just at the cusp of what will surely be a rollercoaster, but above all the myriad of feelings I’ve experienced over the past few weeks, I’ve felt grateful to have people who get it at the other end of all of these messages. Special needs moms are a fierce, compassionate, and welcoming group. No one wants to be in this club, but if you are, you aren’t alone.