Tuesday, March 27, 2012

when is enough, enough?

This is one of those posts that I have thought about A LOT...so much in fact that I have debated numerous times, it's true value, or if it's worth putting it out there, but sometimes you gotta jump then look, so here it goes.  When Nolan was born I was over the top, researched day and night EVERYTHING I could get my hands on to make him "typical", more normal, have a leg up and honestly, I was obsessed with it, I knew stats that most doctor's didn't know, google is a scary thing, but also it's awesome when you need it.  Well, I felt I did, it's my way of coping, with really any problem I am confronted with, research it, find a solution, put said solution into action...simple right?  I spent two hours on the phone with the president and creator of Nutrivene-D a targeted nutritional supplement, basically a vitamin geared specifically for areas that are deficient in people with down syndrome.  It was a great phone call, very educational and personal, we spoke about his story and his touching love for his daughter.  It was good.

I also met with an Early Intervention Specialist at our home to discuss treatment options for Nolan, he was six weeks old.  It seemed odd, I mean, he was SIX WEEKS OLD.   This takes early to a whole new level.  It's hard though, because in your heart as a mother you have an intuition that leads you in a certain direction, pulls you to a center of gravity that you feel fits.  Well, this didn't, fit, so to speak, don't get me wrong,  the woman was AMAZING.  I love her, still love her, she is personable, kind, listened so gently and offered great support, I told her shocking, alarming truths, asked her ridiculously annoying questions and still she smiled and graciously held my hand through this journey.  I loved having her there, she was kind of like my confessional a soft place to fall and spill it all.  But, the whole concept of early intervention, well that was a different story.  I couldn't wrap my head around how this was helping my 2 month old, 3 month old, 6 month old, I couldn't figure out, what if anything was going to help him truly develop, would he?  Were my expectations too high? I mean come on, I am known for my type A, over achiever antics, and surely they were on overdrive for therapies involving my son.  I couldn't wait for signing time DVD's, oral stimulation techniques for speech, I had tubes placed in Nolan's ears at 12 weeks, UNHEARD of, but I am not one to lay down, I was fighting for my boy and his success depended on it.

I remember looking at People magazine sitting on my end table.  I got it weekly, loved it, my hour to peruse the pages and live in a fantasy land, I cherished it, and yet, there were stacks of them that hadn't even been touched, but to be dusted around.  I remember my obsession with Etsy and buying adorable handmade dresses for my girl and finding her the cutest hair accessories, planning parties and entertaining, finding new recipes to try out just for fun on a Tuesday night.  I missed my old life.  I sat in that moment briefly and thought, "will I ever be like that again?".  I couldn't right now, I couldn't "waste" time, worrying about my past life I needed to focus my energy on now and what I could do for Nolan.  I couldn't live with the "possible" guilt I may feel years from now if "only I had done one more thing...".  It's an insurmountable pressure, derived from the most genuine, loving place in the world, a mama's heart.  We've all had it, in one way or another, I had felt it before, potty training my first born, thinking surely he would pee himself at prom if I didn't figure this out before he was THREE....but that's the difference, those were trite things that I could now laugh about, they weren't big things, like, what if he never speaks in sentences because we didn't work on speech enough and only a handful of people understand him?  What if he learns to walk later and later and loses so many cognitive abilities because of his lack of gross motor development? What if because of what I have or haven't done he isn't able to take basic care of himself, wipe his bottom, tie his shoes, use the microwave?

You see, there are so many things that as a parent of a child with special needs, you spend your day and night thinking about, analyzing, "am I doing enough?"  Are we ever doing enough?  Is our house clean enough? Are we sweet enough? Volunteer enough? It's the big question of every mother I know.  Not just in regards to her children but in all areas.  It's the MG, mother guilt, that creeps up when you look over at your People....so, fast forward to Nolan not progressing at all, and really taking a long, slow painful path to development, and I kept reading, all of these moms.  They would talk about how slow it was from milestone to milestone, I kept beating myself up, thinking it was me, that if I would just slow down and accept his life and my life it would be fine.  Well, thank God I didn't, thank God I am just crazy enough to finally follow my heart and find out he was having seizures, I am truly grateful for that.

In doing that I have found that this whole Early Intervention, Nutritional Supplement, constant evaluation of progression, it's just not my thing.  I mean think about how you would feel if someone came to your house and stared at your 2 year old and said now, "can she count?"  OK, well can she count to 10, to 20 to 30?  If the answer was yes, then they shoot for more and more, it's seems never to be enough, always more to do and evaluate.  See that's the thing, it's this evaluation of performance that I just couldn't wrap my brain around.  I found myself trying to love my child for Nolan, not his current milestone accomplishment, but for him.  And then, twice weekly, I sat observing and pushing him to do more, show us more, BE more, it just left me icky for lack of better word.  It seemed to go against all that I wanted for him and I and our relationship, I remember when he brought his hands to center and a toy from one hand to another, something I NEVER noticed or cared to notice with my other children, well I was so happy, so excited that he had done it, it felt awesome....fast forward months later, when we would discuss normal milestones to be expected, that most chidden at 18 months with DS are pulling to stand and he won't even really attempt to do that, it feels awful, lousy, like a set back.  It's not good for me, and is it for him?  Still, if I think anything will help Nolan have the best future possible I will do it, try it, drive to it, pay for it, you name it.  I just don't know that this is it.  I am still following through with minimal intervention, once weekly.  It's fun, we enjoy it, Nolan and I that is, and he's doing so well, every week progressing more and showing new skills, he's mastered the "more" sign, closing his little hands and bumping them together, it's so adorable.

I remember hearing once about an analogy of early intervention, that if you put a one year old on a bike every day until they are three and then when they turn three they ride it, everyone says, "OMG you did that by teaching them everyday!" Or really, was that child just three years old and ready to ride it?  That's the question, that's the problem that I can't seem to find an answer to.  Many people will think this is ridiculous, that EI has changed our children's lives, brought them further than surely anything else over the last 30 years and maybe that's true, but more important that that, I believe it's love.  It's inclusion, it's being a part of a family, not stuck in an institution without any chance to learn or grow.  When Nolan's therapist was leaving today, Nolan was playing with Audrey and she remarked, how interactive they were.  That Audrey was reading him a little book and he was tentatively listening to every word and smiling appropriately.  I told her, "that's what I mean, his learning is all around him", all day long, priceless and in abundance, love and support that's what really helps all of us flourish, above all else.  Now I need to go read my People and find a good Gnocchi recipe tonight....I think that IS enough for now.


  1. So glad you posted this, I often think I am the only one who feels this way. I quit EI a few months ago when my son turned two. It just started feeling silly and pointless. He's going to learn no matter what and I don't need some one coming to my house once a week to see how many blocks he can stack!
    Excellent post!

    1. Thank you!!!! I just clicked through your blog and feel soooooo much like you!!! Its awesome to find an honest and similar perspective, gotta love the Internet! Thanks again!


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