My two Special Boys - By Teresa

I worry about my twin boy's (Matthew and Andrew)education, they both have developmental delays. And then they do something that makes me realize that everyone on God's earth has his/her place a calling so to speak. My boys have a difficult time learning in school it seems. But, they know God and his righteousness. And they have learned life lessons at an earlier age than most, that they put God first in their lives. That makes them so smart to me. And it’s God's answer to me that they are going to do great things in their life time. And that they are "Normal." I have nothing to worry about. They are going to be fine.

 They know if mom and dad can't help with the playground bully, they can pray to God, and he can help when we can't. They love to go to Church and to learn about God. They draw me pictures of God's Angel's, and just are a testimony that God does miracles in 2012. They are walking, talking miracles, and they know and love God as their savior. If you could only hear them talk. It’s like God hears my prayers for them, and when they come and draw me pictures of Angels and a rainbow and that is God's promise to us. Just things like this.

 I know that God has them in his hands no matter what. Andrew drew the attached picture on 2/6/12. He handed me this as he was getting in the truck to go home. This is what he does a lot. So I know he is going to be fine. God has given them gifts. Matthew loves to play the electric guitar and composes his own songs. They are only just turning 10, but Matthew can rock the house. He loves to play and turns his back to us. But, God has given him a gift too. 

I am their mother so I can write forever about my two very special boys!

Kindergarten with Ty: an adventure!

The creativity and humor of my son make homeschool an adventure.  No map can prepare me!  No curriculum is without adventure!

 

PreK was by the seat of my pants...he was eager and learned a lot.

 

My biggest issues were and still are learning how to teach him and keeping him motivated.

I mean how many times can you read Mary Had A Little Lamb and take a test on it resulting in 40 or less?

Just imagine...a screen (or paper, which ever) is in front of him. He knows the nursery rhyme by heart...knows when the laughs come, knows all about it.

 

He is asked which animal did Mary have? Given the choice of a dog, chicken and a lamb, he is gonna choose a different animal each time and giggle.  ARRRRGH!  Armed with coffee and a patient smile pasted on my face, we reevaluate the situation.  He is grinning up at me. 

 

OK...why cant Mary have a dog? Or wouldnt it be fun if it was a chicken!

 

Okay let that one go because we know missing one out of five is still passing. 

Deep breath...where did the lamb follow Mary? To a barn? To School? To the store?

 

Remember this is a kid who loves the page where all the kids laugh and play!  Certianly he will choose the school, right?

 

When given the choices he goes for the barn FIRST!

NO? He giggles. Next he wants the store...forget it.

 

Does he know the material? Yes he does. He chooses to be wrong. How do I know?  I have come to love ABA. 

 

In the search for motivators I find that he loves play dough. If I hold play dough out as the reward for answering a question correctly, guess who gets the answer right each time? As long as he gets the can of playdough after each question right now we are fine. 

 

Do I have enough playdough to get through this coming year?   I have come to realize in the search for motivators, varity and non-perishable are better.  Holding out for larger blocks of time before awarding said motivator is imperative.  Yup, he has to want it bad...as bad as I was correct answers from a boy who really knows the answer. Will we be able to use ABA and fade out the motivators?  Ha! 

 

Yup, kindergarten will be by the seat of my pants too, LOL!  The only map I have is the lead he gives me and it is quite and adventure!   Think I can keep up?  We are gonna have fun trying!

Watching Over This Boy

There is a lot of time to think at 2:30am as you watch over a boy.

He is the sweetest, most stubborn boy. He seems tough. But he is not. He is fragile. He is like a glass bull in a brick factory. Charging and going full speed.

You begin to think strange things at 2:30am.

His breathing is deep and steady. His body hard at work, knitting back together after another surgery.
How wonderfully we are created. It seems the way our bodies heal when we are injured would make it so that our bodies were made to live on and on. But we don’t. Life is fragile. Life is a gift.

This boy that’s sleeping so deeply next to me, well, he shows us a thing or two about strength and love.
Who ever thought I would find spending my vacation in a children’s museum fun at my age? Or choose to buy toys instead of getting a haircut?

I remember the struggle we had when he was placed in our home.  The shock of his medical condition, the shock of seeking help and not finding it easily.  I remember calling Parent to Parent.  There had to be answers.  The search was just beginning.  I was looking for a solution, answers to questions.  What I found out is there is not an answer or a solution.  There is only learning to live fully and how to make whatever you are dealing with into the best life you can.  He takes the lead in that.  He teaches us.

He has severe congenital scoliosis and kyphosis.  He has a G Tube because he can’t eat enough to sustain his weight due to surgeries; he is diagnosed with autism and Down syndrome and cannot communicate.   The impact of the progressive spinal curve from the scoliosis affects his lungs and we were given a prognosis of “Maybe 10 years or so of life without the aid of some newer technology”.  So many disabilities, so painful.  Yet he keeps smiling.

I watch as he smiles and plays, even in discomfort.  He accepts it almost as if he thinks that this pain must happen to all little boys.  In the middle of play, he lays down on the floor because he just can’t sit up anymore.  But he wants to keep playing.  His endurance is low and it shows as he walks away.  He walks with an uneven gait and pays the price with pain.  Yet he wants to go.  He giggles, pretends to run and jump, his feet never leaving the ground.  At the red light, he shouts “Bop” and when it turns green, a resounding “OOooo” fills the car which fades into giggles. 

Some have asked why we would do this.  When a child arrives in the natural way with disabilities, it is a responsibility and duty the parent did not ask for. 

Why we would say yes to taking on someone with something like this?  When they put this child in my arms, as much as any other mother, the strong urge to protect and care came into play.  This instinct to care for and protect is not limited to natural birth.  In response to that question I have to say “who wouldn’t?  Who among us would turn their back?” 

All I can say is whoever would turn away would be losing the greatest gift.  Learning to make whatever you are dealing with into the best life possible.  And a great deal of love and joy.

And that’s a warm feeling at 2:30am watching over a boy. 

Talky, Talk - By Deana

 My name is Deana, I am the mommy of Jakob, a 9 yr old that just happens to have cerebral palsy. His cerebral palsy is called spastic quadriplegic cerebral palsy, meaning it affects all parts of his body. He is unable to sit, walk or feed himself. 

Despite all this Jakob is a very happy, loving child.  He is an adventure everyday. My husband, Travis, & I are constantly amazed at the things that Jakob does or is learning to do every day.  He is learning to talk, which is amazing.

When he started saying a few words we were ecstatic, but when he started short sentences we were in AWE. He started out with “Daddy” & “Nu-ma” but he has advanced to “I love you”, “I hungy” & “Go bed” . Recently he has added words and uses them in the most appropriate way, though sometimes amusing, he has also starting repeating things too.

The other day, he was sitting with his daddy when he told him that he wanted a cookie, daddy asked him to wait a minute but Jakob told him to “get it now” then added “pease”.  We both about fell out of chairs laughing because he had never spoke that way before. Since then he has learned to say “yes ma'am” “I sick” & “I done”. 

We look forward every day to the new things he will come up with. Like I said everyday is an adventure and that makes life rewarding. Let the talking continue and grow.

Epilepsy and Corey

My son Corey is 12 years old and has Epilepsy. He started having seizures when he was 3. The doctors kept saying he would out grow them. For 8 years he went undiagnosed. Then in March of 2010 he had a tonic/clonic seizure while rehearsing for a play at school. I got a call from the school saying Corey had a bad seizure. My heart dropped. Corey was transported to the hospital where several tests were run. For 2 months we didn't have a dianosis. Then in May of 2010 the neurologist told us that Corey has Epilepsy. My husband and I were heart broken. To find out that our child has something that can't be "fixed" is one of the worst things a parent can hear. It was hard trying to explain it to his 3 brothers and the rest of the family. Because on the outside Corey looks fine. He doesn't look sick. His seizures are sometimes so small that you don't notice unless you are starring at him. It is frustrating because people question whether he really has Epilepsy or not.

 

On January 2, 2011 Corey had a tonic seizure at the Flint Riverquarium. He fell straight back like a board, eyes rolled back in his head, his lips turned blue, his chest and stomach were caved in like he was holding a breath and he stopped breathing for 3 minutes. My other boys were there. They thought he had died. This has really affected them. My youngest, who is 5, says on almost a daily basis, "Corey don't have a seizure and die today." My two older ones don't understand that Corey can't control some of the things he does. So they end up arguing with him a lot. There has been a lot of tension in our house since Corey was diagnosed. But mainly because we all don't know what is going to happen or when the next big seizure is.

 

One of the hardest things is not knowing what the future holds for Corey. Will he drive? Will he be able to live on his own? Every parent wants their child to be "normal" and finding out that my son will never be "normal" tears at my heart every day. I have 3 other boys that are "normal". Corey has a hard time knowing that he has something wrong with him and his brothers don't. He was in the doctors office when the neurologist told me that if we don't get Corey's seizures under control he could become mentally or physically "mentally retarded" (I don't like that word but that is what the doctor used.) There have been many days that he breaks down and crys. He asks, "Why do I have this?" I don't have the answers to give him. I want so badly to be able to take it away from him. I want him to be able to be a regular 12 year old that goes out and rides a bike by himself or plays alone. He has to be watched at all times to make sure he isn't seizing.

 

Parents who don't have a special needs child do not understand what we go through. Every day I worry. Every night I get up numerous times to check on him. I pray every day that Corey doesn't have a seizure or that Corey wakes up. I pray that he doesn't have SUDEP (Sudden unexplained death in Epilepsy). I pray that he will grow up and live a happy healthy life. I worry every time the phone rings. I worry that it might be his school calling to say Corey had a seizure. I worry when he isn't in my sight. I worry when he is in the bathroom. I worry when he is sleeping. 

 

One good thing that has come of this is that I see each day as a blessing. Before Corey's diagnosis I would let days go by without really telling my kids how much I love and adore them. But now I make sure every time they leave for school, come home from school, go to a friends house or just go outside that I tell them I love them. I don't know what the future will be like for Corey.All I can do as his mom is fight to find answers and ways of making him have a better quality of life.