Update for the Mighty

Posted on March 23, 2017 by Michelle Maple

It was the most difficult year of my life. My family was still struggling with issues of moving but our Special K began to take a turn. We were finally able to get her heart surgery done and breathe a sigh of relief…or so we thought. Little did we know that while one chapter was closing another difficult one was about to begin…

In the fall Special K’s teacher began to speculate there was something more wrong with our girl than we originally thought. Seriously? What more can we add to this list is what I thought…we have Congenital Rubella Syndrome which is nearly unheard of (what I wouldn’t give to meet another Mama with a little like mine), she is deaf, blind in one eye, has SPD and overall global and developmental delays and challenges…oh, and her heart. But in my heart I had waited for someone else to validate what I already knew. She just wasn’t progressing in the way she should, in fact she began regressing in some areas, then tantrums started getting worse and more frequent, eating slowly but surely stopped and then someone said it…autism. While this is a bad word for some and not for others I can only write my own feelings on it…sort of…I’m not sure I even know yet.

Wait, yes I do, it sucks! Well not always though. It’s who she is, maybe… it depends on who you ask. The pediatrician says no…the psychiatrist says yes but then again maybe not… no…her speech therapist says no but the other speech therapist is leaning towards yes, her teacher thinks possibly, her heart doctor says not typical, her eye doctor (who I LOVE, LOVE, LOVE) says yeah probably but we’re all autistic…love him….so now I’m spinning. My child is spinning literally…we have a swing in her room…but non-literally in a downward spiral and I’m watching her shut down. Easter seals hasn’t called in two years so thankfully I’m not holding my breath… I hear she had a terrible day at school more days than not…She is explosive and angry and then giggly and loving…she wants to be held and carried and squeezed tight, I mean really tight…she wants to be left alone and throw a fit…she hates her clothes on, her hair up, her shoes on…she hates food…she likes drinks…she says I love you (in ASL)..she knows it is special I can see it in her eyes when she looks at me, but she doesn’t like to look at everybody…is she shy, does she know she will be held accountable for what she learns when she looks or is there something more? Her signs are progressing…she knows some of her colors…she understands routine…she hates directions…she doesn’t share…she is special. But what makes her so special? I’d say she is special because she is my fiercely and wonderfully made daughter. But she has special needs…but what are they? I was told its something…but no one quite knows exactly what it may be. I’m judged because she can’t do what other children do. I’m judged because more often than not I want peace with her than a battle…is it so insane that I just want to hug and coddle my baby. Little digs and snide remarks are made daily…I’m used to it. Yes she is 4, no she is not potty trained. Yep she still has a pacifier. She goes to bed at 7:30…happily and easily! She usually sleeps through the night…but if she wakes up no problem she laughs herself back to sleep…literally and loudly…she can’t hear how loud she is…but the rest of us can…she is happy to play alone and entertain herself…except she really wants us to sit next to her on the floor while she plays. She loves arts and crafts and books…she hates rules and directions…Lord does she HATE being told what to do. She can tell you all the names of her classmates but only when she wants to! Though she really isn’t interested in playing with them just yet. She hates school…she cries all day and comes home exhausted! She lights up with smiles and hugs when she sees her Papa…but hardly pauses to recognize when Dad arrives home from work. She will hug you and kiss you to manipulate you into her plan.

Most days my head spins…my heart aches…I get 6 hours of sleep but my body needs 8…I’m happy and thrilled she is mine…I’m frustrated and angry at why it is so difficult…I’m depressed because its lonely…I’m blessed beyond words because few people will ever experience this type of love…I spend countless hours reading and researching…I’m grieving the loss…I’m celebrating the blessing…I’m proud to be her Mama…I’m trusting in God’s plan…I’m weak and doubtful that I’m smart enough to do this…I hate pity…I appreciate empathy. I don’t need her to be anything other than who she is…but at this point even she is unhappy with who she is.

I have been a broken record for months…I have asked every doctor she has what they think. I’ve talked to all her therapists and teachers. I’ve met with friends, other teachers, and therapists for opinions. I cried my eyes out most nights. I put on a smile every morning. I WILL NOT be a bitter and pissed off parent of a child with special needs. I WON’T! I will honor what God chose and rely on him for strength when I have none left. I will glorify the story He is writing…and count it a blessing to be chosen. But some days it will be hard and I don’t want to. When she pukes her medicine that is desperately needed…I want to scream..ok sometimes I do! When she throws her food because it isn’t what she wants I try to imagine what it would be like…she knows what she wants she is 4 …she has an opinion but all be darn if she can communicate it! I want to throw my plate too!

The journey with a child who has special and complex needs is exhausting and difficult but it can also be rewarding and wonderful. May you find the support you need to get through today…tomorrow will be a new day with new trials but also new celebrations. You may have to look for them but they are there…