Saturday, June 29, 2013

What lies within

A wise man named Ralph Waldo Emerson once said “What lies behind us and what lies before us are tiny matters compared to what lies within us.” 

Walking this “new normal” road of special needs is hard on every account. I know that once Mighty Z finally made her way home from hospital after spending her first six months of life in the NICU, what lay behind me was in many ways a safe haven.  Although I longed to have her home with our family, at the time I had no idea what the reality of having her home would be like…and the overwhelming responsibility to care for, and to keep  alive, a baby that was as medically fragile as Mighty Z  was at six months old. I truly felt that I could not do this job,  and although I never told a soul of the insecurities that surrounded me, I found  true courage, not in a loud roar, but it was in a tiny voice inside my heart saying I will do this again tomorrow as I laid my head against my pillow  and I cried myself to sleep every night for months and sometimes I still do . That whisper kept saying, “I will do this again.”

 You see I had no idea what lay within me -- I only saw the imperfection, inadequacies, and the fear that dwelt so close to the surface.  Only after several years of walking down this road did I start to see in myself what truly was the strong foundation within me…the doctors and nurses begin to ask not just what I thought, but began to ask for my advice. It wasn't that I was so educated and so knowledgeable, it was that fact that I had pushed through for my daughter. Even though fear and anxiety washed over me like a tidal wave (and still does), I pushed through that…I let that wave of fear and anxiety hit me and then I pushed through it. I do so silently, most times, simply because when the waves start to wash over me I have to react to what is going on with Mighty Z immediately, and there can be no hesitation.

When you embark on this “new normal” road of special needs, you might feel  the same way and you might look around you and think there is no way I can do this…I just can’t do this. You might see the others that walk this road and think that they are handling it better. You may feel that what lies within you is nothing but imperfection, inadequacies, and fear, but that is not really the case. You are made of sterner stuff then you think, you do have the courage. Just listen to that little voice that says, “I will do this again,” even if you cry yourself to sleep. 
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Sunday, June 23, 2013

adventures in education

Finding the appropriate school for Mighty Z has been an adventure to say the least.

When it was time for Mighty Z to go to school at age 3, she went through a public school program called Head Start in Las Vegas. It was amazing!  Mighty Z wasn’t talking, but the teacher taught her sign language and encouraged Mighty Z to make some sort of noise.  Mighty Z grew leaps and bounds with this teacher and with the program, so when my husband decided that he should change careers and move to Maryland right outside DC, I thought that Mighty Z was well on her way to amazing opportunities.

Apparently, living right outside D.C. doesn’t mean that your child will get a great education. Even though Maryland is ranked one of the top schools in the nation, they forgot to weigh in the special needs part of the public school. Mighty Z was not taught anything and was allowed to behave however she wanted to, and as a 4 year old that was right up her alley.  The IEP meetings were a joke.  The lead teacher and speech therapist didn’t know sign language and therefore didn’t help Mighty Z at all.  At one time both teachers tried to give Mighty Z a keyboard that would speak for her, thus making sure Mighty Z would never need to learn to talk. They claimed it would be easier for all! 

 I quickly pointed out that it would not make Mighty Z’s future better.  I was mad as you can imagine, and I took matters into my own hands.  I began teaching Mighty Z at home and I took her to private speech.  In a month Mighty Z was talking in full sentences. I blame myself for not pushing Mighty Z to talk sooner but hey, I was focusing on trying to keep her alive, and like so many other things, the talking fell to the way side until I had time and motivation to get it done.

After my brief introduction to the public school system in Maryland, I placed Mighty Z in Catholic School.  There at St. Martin of Tours Mighty Z blossomed. I have never been so proud of a school as I was of that little Catholic school in Maryland.  Not only did they teach Mighty Z, but they taught me as well about what Catholics are really about (I grew up nondenominational). I still feel a sense of pride to say that I was part of something as wonderful as St. Martin of Tours, so of course I wanted to continue the Catholic education for both Lala and Mighty Z when we moved to Dallas.

I will admit that I clustered all Catholic Schools into a big pile and thought they were all alike.  At St. Monica’s in Dallas I was told many horrible things about Mighty Z-- none of which were true and some of which still haunt me to this day. Having the Principal and the counselor tell me that they didn’t care for Mighty Z’s disease was the least of the things they said. They left voice mails on Mighty Z’s tutor’s phone about how that I was in denial, difficult, and delusional, and that Mighty Z was retarded. How could a counselor say those things about a little girl in the second grade?  After many years I found out why they said that; it was because Mighty Z had colored in all the bubbles during her standardized test (ummmm, she was in second grade for crying out loud.)

 St. Monica’s accused the Nun at St. Martin of Tours of being a liar, and as I didn’t grow up Catholic I wasn’t positive it is a no-no to call a nun a liar, but I think it is.  So we had to find another school that would see the treasure I felt that Mighty Z was.

Once again I found a gem of a little school, a school that did view Mighty Z as a treasure and thought that Mighty Z was a smart little cookie. And up until this year, I had visions of staying at Our Redeemer Lutheran School until sixth grade, which is when the school ends.  This year was different. The teacher was great, the school was great, and they all still felt the same about Mighty Z.  What changed was that Mighty Z was being bullied!  A little boy was punching her in chest which is where her life support machines are.   Even though Mighty Z’s friends stood up for her and protected her, they were punished for doing so. I know what you’re thinking!  Where was the teachers?  Right?  Well, I will say that kids are smart and many times things happen when the teacher is not looking. 

Was this child who was hitting Mighty Z punished?  I honestly have no idea, but even though we told the teacher, the bullying continues.  Mighty Z has never backed down from a bully but this time it hurt her heart and she was scared. Sometimes all you can do is leave a place to protect your child. I am leaving this year with a heavy heart.  Even though this new normal world of special needs has rearranged my dreams and hopes, it still hurts to have this dream of Mighty Z’s school come to an end in such a heartbreaking way. Mighty Z has started counseling to talk about this bully and also the fact that she has to go through so much to be alive.

Even though I have a heavy heart about Mighty Z’ s School, her daddy and I have looked into new opportunities for Mighty Z, for a place that can help Mighty Z succeed even more. And we think we found one. 

I feel good about sending Mighty Z to Dallas Academy; it is a school for children with ADD and ADHD, and even though Mighty Z does not have either ADD or ADHD, Mighty Z still has to work extra hard to stay up with her peers at Our Redeemer. I am hopeful that Dallas Academy can push Mighty Z even further and give her the tools not just to keep up, but to soar.  All things happen for a reason, and even with the sadness I feel, I know that we are making the right choice.

edited by Emily Joy Minich
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