Climbing Castles & Conquering Fears

I got an e-mail from Matthew's teacher this afternoon. Today the class went on a field trip to Shangri La in Orange Texas, and then to Lions Club Park for a picnic. She shared with me that while at the park, Matthew climbed to the top of the castle. With all of his anxieties about new situations, and fear of heights....going up there is a pretty big deal. She said he yelled the whole way, but he wanted to climb it , and he did. He was quite proud of himself. I've noticed this quite a bit with Matthew lately. He battles with the desire to try new things...and the fear that generally stops him. This made me think about our trip to the S.E. Texas State Fair. He walked around all day with Randy and I ...while his brother and sister rode some of the rides. He watched them, and I could see that he wanted to...but each time we asked him he answered... "NO!" That is until he watched them ride the bumper cars. He took some tickets from my bag, grabbed his dads hand, and pointed at the cars. I asked him if he wanted to ride and this time his answer was YES! So there he stood in line with his dad. The longer they waited, the more nervous he became. When their turn came up, he began to scream. Randy looked back at me...he was not sure whether to go forward or to help him away from the cars. But Matthew continued to walk forward. He screamed until they were both sitting in the same bumper car and for a few seconds after the car began to move. Eventually he relaxed and enjoyed himself. When the ride was over...he was beside himself with pride.

On The Mend

Well, Matthew's eardrum did not ruptured after all...thank goodness! He does however have a pretty severe ear infection. Bad timing too, as today he would have made the really fun trip with his class to Plantersville Texas, for the Texas Renaissance Festival. I hate for him to miss anything... this being his last year of School. Our visit at the doctors office yesterday went pretty much as expected. Randy restrained, The Doctor examined, Matthew screamed, and I to no avail tried to calm and comfort him. This is just one of the many hurdles of having a non-verbal child. After the doctor finished the examination, we were all pretty much  frazzled and in need of a sedative. Randy took Matthew back out to the car while I got the prescriptions, and talked with the Doctor. What the screaming boils down to is anxiety....so maybe an anti-anxiety medication is what he needs? But he is only like that when he presented with the unfamiliar. He has the sweetest personality, and a most outstanding sense of humor. Other than the occasional antibiotic...he has never been on medication of any kind. I'm just not sure what to do.

Waiting for Dr. Appointment

I am pretty sure that Matthew's eardrum has ruptured, and I'm feeling pretty lousy about it. I've always been pretty good at just knowing when something is off with him. He has had what I thought was a cold for the last few days, but sadly, I had no idea his ear was bothering him. It certainly hasn't affected his appetite one bit! Taking Matthew to the doctor is not an easy task, and to be honest...my stomach is currently in knots. He is going to begin screaming at the door, he is going to scream in the waiting room, and every eye in the place will be fixed on us. He is now bigger than me and I am no longer able to distract, or restrain so that the doctor can examine him. Thank God for my wonderful Randy...he will be meeting us there to help.

Saturday Morning

Saturday=Sleeping in even just a little! Lay in bed, drink coffee, read or maybe watch a little something on the television. In other words, wake up at our own pace day. Well, sleep in worked out, but the rest was not meant to be! I opened my eyes at around 9 AM, thought WHAT IS THAT SMELL, and bolted out of the bed. The kitchen and living room were filled with smoke! I shouted for Randy...who must have already bolted from the bed too, because he was behind me in a flash. We could barely see the anything, but I made my way to the back door, as he made his way to the kitchen. The microwave was on fire!

It didn't take us long to figure out that Mr. Matthew had decided to make his own breakfast. He took a hot pocket out of the freezer, and popped it in the microwave. I am not sure if he removed the wrapper, not do I have any idea how long it had been cooking. Apparently it must have been a long time, as he obviously got bored and went on back to his room. The microwave got so hot that the breaker flipped, which made the it stop running thank goodness. The fire melted the door. On the inside, the hotpocket looked like a piece of charcoal, and was still glowing. We got the smoke out of the house as fast as we could, but I can still smell it.

We were fortunate in many ways. Things could have definitely turned out another way Saturday Morning. None of our fire alarms went off. They are tested every month...and even tested normal that day. I am not sure why they didn't work, but we have new alarms now. We have a new heavy duty microwave, with a child lock. We have removed the knobs on the stove. Funny, we try so hard to encourage Matthew to do as many things as he is able independently and when he does...it scares the hell out of us.

His World Is Good

It's 3:35 Friday afternoon...Matthew's bus arrives home as usual. The bus assistant puts his Friday treat in his hand, (a couple pieces of candy)makes sure that he has his jacket and Matthew responds with a hug. He turns and heads up the driveway, toward me standing at the front door. He see's me, he is smiling, he is happy...he's always, ALWAYS happy! His head is bobbing from side to side, his hands are flapping close to his face, he is making that shrieking noise...all of which he does when his world is good.

Today is just the same as yesterday...and that is exactly how he likes it. The cars that had been stopped by the flashing lights of the bus slowly begin to move. It has almost become somewhat of a game to watch and see how many of the drivers simply drive on...and how many are going to turn their head and stare at him as he bobs, flaps, and shrieks up the driveway. He is oblivious to all of this...all he can see is me standing at the door, waving and smiling back at him....all that matters is that today is the same as yesterday...and his world is good.

We got new neighbors recently and all this week they have been having their roof re-shingled. Today when Matthew got off the bus...not only did these 5 roofers stare at him...but they stopped what they were doing, and walked over to our driveway to get a closer look. You would think that after 21 years of being his mother, the stares would no longer make me uncomfortable...and to be honest, most of the time it truly doesn't. But occasionally, like today, I can't help it.

Now, it wasn't like they were laughing at him, or making fun...at least I don't think they were...but they were staring at my son like he was some kind of freak show. I felt my skin get hot, I felt that queasy feeling in my stomach and I felt like crying. For the first time in a VERY long time I felt like shouting, "What the hell are you staring at!?!" But...I didn't...he reached the door, handed me his candy and jacket, smiled sweetly and gave me a hug... just as he did yesterday...and my world is good.

Where Are The Parents?

Several years ago, I belonged to a forum for parents of children with special needs. Sue Stuyvesant, also a member, shared this letter with us. Though I have never forgotten her words...I lost and never thought I would ever see this letter again. I think about Sue often...especially when I attend an ARD meeting for my son. I found it today and would like to share it with you.

Beautifully Written By Sue Stuyvesant, Parent

"Hey everyone. For those of you who don't know me (I'm only an occasional poster) I am mom to Michelle, 9 years old, micro cephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm posting.

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive."

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Sue passed away in October 2003. Michelle passed away in September of 2005 just one week before she was to turn 18.

Living In My Skin...A Must Read!

Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give sometimes. Someone I love has needs that mean I am not always able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life...And still others don't understand what it is to be me.. they aren't living in my skin.
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Living In My Skin The Insiders View of Life With a Special Need Child A New Book by Lori Hickman
Lori Hickman Interview
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As most of you know...I have a son with 'special needs'. He is a precious blessing. He has brought so much joy to my life...and yet there are times that I feel so deeply alone with my fear. What will happen to him once I can no longer care for him on my own or am gone? Matthew has given me the opportunity to see things that some may over look in their everyday lives.
I love this book! It is as if Lori Hickman has seen right inside of my heart and dictated it to the world.

A Very Special Voice

Do you know someone who works their tail off for the good of others? I do! Wanda and Rick Felty are members of the Professional Photographers of America, Oklahoma Professional Photographers Association and the Metro Professional Photographers Association (Oklahoma City, OK).In addition to being great family photographers...They also worked to achieve "Special Kids Photography Accreditation" through the Special Kids Photography of America accreditation program. To better understand the service they provide please take a moment to read the News Story:One Families Business NewsOK Story

Check Out Their Awesome Photography! >http://okphotopros.com/needs.html

Wanda works at Children's Hospital as a Family Advocate for families who have children with disabilities. She also serves on many state advisory boards representing families and individuals with disabilities.

Wanda and I go way back...all the way back to the Junior High track team. I remember her best for her quick wit and ability to make people laugh. In fact...her whole family shares that wonderful humor. Wanda and my husband graduated two years ahead of me and sadly we lost touch. My husband finished his service in the Air Force in 1995 and we moved back home. I visited my son one day in the "Life Skills" class and imagine my surprise when I looked up and saw Wanda and learned that we shared a very special bond....Our special children.

Please stop by and support Wanda And Rick Felty & Family in their efforts to put an end to "Hate Speech" through their blog- The "R" Word Campaign blog.

"This site is an effort to help individuals and families of those with disabilities by letting them know its OKAY to speak out when you hear the “R” Word. Together we can make a difference."~Rick & Wanda Felty~

Help them spread the word!

"When You Say "Retard"...Someone Hurts!"

God Chooses Mom for Disabled Child

My son Matthew (our first child) suffered a brain injury due to the oxygen deprivation...When he was 5 the level of the damage and disability was very obvious. I was very depressed and so scared. One day I found an envelope addressed to me in my mailbox. There was no return address. Inside I found a newspaper clipping...it was a very touching article written by Erma Bombeck. To this day I have no idea who sent it to me...but I am certain that it was someone who knew I was hurting and cared a great deal about me. To this day...I continue to share that article...hopefully it will find and touch a mother who has just learned her child will have challenges and let her know that someone knows how she feels and that she is not alone.


God Chooses Mom for Disabled Child
Written by Erma Bombeck Published in the Today Newspaper Sept. 4th, 1993

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rutledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity.
" Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "Momma" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."