I've told our story to, what feels like, 4 million people...doctors, nurses, therapists, nutrionists, family, nurses, co-workers, bosses, friends, babysitters, insurance companies, human resource representatives, insurance agents, and one time to some random women in the grocery store line that may have involved tears and another teary moment in an elevator to another parent (thank you random person for telling me that I am validated in my freaking out moment.
Oliver has and always will be, just O., or the Monster, or my baby, or Oliver. I've spent the last 2 1/2 years explaining away his behavior. "He's just quirky", I'd say. "He's just smarter than other kiddos", "That just his personality", "He has a big imagination".... but then came our breaking point... and a wake-up call from my husband....
O isn't "just quirky"...
Following a moment of complete breakdown in the cracker aisle at a grocery store on our monthly, family grocery trip D looked at me, hand on my elbow, as both O and I are sobbing and said "We need to see a doctor. This is not normal and not healthy". I agreed.
"He's not just quirky".
We made an appointment with our pediatrician and our life has never been the same since. We hadn't been in the office for 5 minutes before our Doc suggested Aspergers and sent us to a Neurologist immediately. I appreciate the support from our Docs but within 2 weeks we went from a normal child to 3 therapists, a ped, a neuro, and a marriage that consists of discussing how to handle our child. I've been married to D for 7 months and been with him for 3 1/2 years and in the past 12 months we have done nothing besides handle our child. I watch O sometimes and want to scream at Doc when I can finally talk to a live person and not a v/m or an appt. 3-4 months away. I want to scream, what can I do NOW. Right now.". I've ordered book on Sensory Perceptive Disorder and Aspergers. I've been calm. I've tried discipline. I've tried physically restraining him (holding him in my arms). I've tried singing (I'll Stand By You). I've tried talking to him about blue (his favorite color), I've tried organizing his toys with him, and being a "hero".
This Mom is tired, and frustrated, and feeling guilty for not being the perfect Mommy. I lose my temper, I lash out at my husband when I can't hear myself think, my job and co-workers have more than been exposed to tears and and distraction. I've asked about a million doctors/nurses/ therapists for help and the reply I got yesterday was "you've made him a Momma's boy with weak emotions and you should be harder on him".
I've wanted a sibling for O. for a long time but I am beginning to see that there is a reason that hasn't happened and never will. My role is to fight against the world for O. It is hard to explain to someone how much time is spent making his voice known and heard and his rights uphold.
WITHOUT DUMPING HIM FULL OF MEDS!
Other Moms have said that the first year is the hardest but all I can think is that I am not the Mommy to do this. I am failing. I am lost. I love my Monster but I have absolutely no clue what I am doing. I am juggling and I am scared that all the balls will fall from my grasp at any second.
4 comments:
I started to leave a comment...and now I think I'm going to have to write too much...my heart is heavy for you Kate! Hang in there girl!
Sounds like things are rough right now. Reading your post, I can't help but feel there is a light at the end of the tunnel. You are on the way to figuring things out, and I am sure it will be an intense period. I work with a woman who has a son that is older than O, and has SPD. Would you mind if I asked her for some tips to pass on to you? She might have helpful advice for NOW.
Please stay strong, Kate.
There's a quote from Mother Teresa that I love. I tell it to myself all the time.
"I know that God will not give me anything I can't handle. I just wish he didn't trust me so much."
Being a mother is difficult (and rewarding) as it is. I am confident that you're not failing.
Just have faith. Pray every day. Ask for direction. Just know that we're all praying for you as well. Things WILL get better.
I wish that I could give you a big hug right now and tell you that everything will be okay. I'm both a mom and child psychologist. From a professional standpoint, I can tell you that the first year is absolutely the hardest because you will go through all of the stages of grief. It will be an emotional rollercoaster so hold on tightly. The good news if there is good news in this is that you are getting help for your son early. Early intervention is SO key. It really is. I'm not just saying that. Your son is young enough that you can help do some re-wiring. Feel free to shoot me an email if I can answer any of your questions.
As a mom, it is heartbreaking to watch your child struggle and feel so powerless. My son does not have Aspergers but he had some serious medical problems for the second year of his life. Lots of scary time spent at Childrens Hospital. I'll spare you our story, but know that you are not alone. It just feels like it. This is the longest comment I have ever written!
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