Isolation Island

Isolation: noun

1.

an act or instance of isolating.

2.

the state of being isolated.

3.

the complete separation from others of a person suffering from contagious or infectious disease; quarantine.

4.

the separation of a nation from other nations by isolationism.

The word itself sounds harsh. To isolate. It's cold. It sounds lonely. Separated. 

Have you ever felt isolated? Alone? Can you imagine being a teen and feeling that way? My son feels like this everywhere. Autism. Teen. Isolated. 

This is time in his life he should have friendships that will carry him through these crazy teen years. Yet, not one person really, truly, engages him. Family sometimes don't know how to engage him. Friends. They don't know how to either. Then I have to ask, what friends? Isolation.

We homeschool. Homeschool groups are usually a group of friends that have common interest and they ask others to join but you can tell that they are close knit. The children there don't know how to "take in a friend that is a little different". So we end up not belonging. It doesn't matter if I try to set up "one on one" time with a friend. It never happens. So we tend to fade out. We tend to be pushed to the back. We end up not going back. 

Church is no different. Youth Pastor. Friends. Teens. Other children. Isolation is there too. I have found him outside in the dark with no supervision. I have seen him isolated in the room. I have seen leaders cringe. I know that church is not filled with perfect people because then I would be really upset. 

It hurts to much to see him hurt. No one says Hi! At least not his age, older people will sometimes acknowledge him. It hurts when people walk past and don't even realize that they are isolating him. Putting him in a place where he has no friends. A place where he can't purse those relationships because they can't see him. They see the AUTISM. 

It's not contagious. It's not weird. It's not a bad thing. It's different. It's beautiful. It's a crazy ride. It's not to be isolated. It starts to become rude. 

When someone says "hi" to you, you don't normally roll your eyes and turn around. Or just don't acknowledge. Or just walk away. Because that is rude. We teach our children that this is rude. He doesn't understand why people won't say "hi" back. It's sad and frustrating. What do you tell him? I tell him that they are rude for not responding because it is rude. 

What am I to do? I have cried my eyeballs out because if you knew his heart you would see him differently. He is the most loyal friend. - Just trust me on this one. He has a heart that chases after God. He is 13 and is really concerned that there are people that don't know Christ. That they may not have a church to attend. This makes me think that he has a bigger heart than I do. How many people have you invited to church this week? He has NO FEAR when sharing the Gospel with anyone - anywhere! He is super excited about worship and church. He is super talented in the Lego department. He can create ANYTHING! I really mean that too. He doesn't need instructions either. He is amazing at drawing. I love that he has this creative side. I know God has something BIG for him. 

I know that he won't always be isolated. Yet, right now this hurts. Isolation. 

I am the child...

I AM THE CHILD

(Author Unknown)

I am the child who cannot talk.

You often pity me, I see it in your eyes.

You wonder how much I am aware of -- I see that as well.

I am aware of much, whether you are happy or sad or fearful,

patient or impatient, full of love and desire,

or if you are just doing your duty by me.

I marvel at your frustration, knowing mine to be far greater,

for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated.

I do not give you answers to your everyday questions,

responses over my well-being, sharing my needs,

or comments about the world about me.

I do not give you rewards as defined by the world's standards -- great strides in

development that you can credit yourself;

I do not give you understanding as you know it.

What I give you is so much more valuable -- I give you instead opportunities.

Opportunities to discover the depth of your character, not mine;

the depth of your love, your commitment, your patience, your abilities;

the opportunity to explore your spirit more deeply than you imagined possible.

I drive you further than you would ever go on your own, working harder,

seeking answers to your many questions with no answers.

I am the child who cannot talk.

I am the child who cannot walk.

The world seems to pass me by.

You see the longing in my eyes to get out of this chair, to run and play like other children.

There is much you take for granted.

I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.

I am dependent on you in these ways.

My gift to you is to make you more aware of your great fortune,

your healthy back and legs, your ability to do for yourself.

Sometimes people appear not to notice me; I always notice them.

I feel not so much envy as desire, desire to stand upright,

to put one foot in front of the other, to be independent.

I give you awareness.

I am the child who cannot walk.

I am the child who is mentally impaired.

I don't learn easily, if you judge me by the world's measuring stick,

what I do know is infinite joy in simple things.

I am not burdened as you are with the strife's and conflicts of a more complicated life.

My gift to you is to grant you the freedom to enjoy things as a child,

to teach you how much your arms around me mean, to give you love.

I give you the gift of simplicity.

I am the child who is mentally impaired.

I am the disabled child.

I am your teacher. If you allow me,

I will teach you what is really important in life.

I will give you and teach you unconditional love.

I gift you with my innocent trust, my dependency upon you.

I teach you about how precious this life is and about not taking things for granted.

I teach you about forgetting your own needs and desires and dreams.

I teach you giving.

Most of all I teach you hope and faith.

I am the disabled child.

Welcome to Holland....

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

****Copied and pasted here***

An Autism Story, my son's story....

I get asked all the time, "How did you know?". This question always sends me back in time. A wave of emotions come over me and I seem to relive it in the 30 seconds that it takes me to respond. I don't think that I ever want to forget, so I am going to write out his/our story here.

My son (Little Buddy - affectionately named) was born in June. He was perfect! He had ten little toes and ten little fingers. He had a head full of hair (so long that I cut it when got home from the hospital). I thought this was it! I fell in love with him the first time I held him. We brought him home and he began to progress just like any other child. He just didn't sleep very well at night, he did struggle with this a lot. He smiled at me, laughed, rolled over, sat up and even said "Moma". Then out of the blue everything changed.

He began to do little things that most people would think "That is too cool!". I remember he used to lay his blocks out like this: blue, yellow, red, blue yellow and red. If I moved them he would have a fit!!! My Mr. and I were in the living room and I had given our Little Buddy a bowl of cherios. He laid them in a straight line around the table, then proceeded to do this: the first of the set of 3 he ate, the second one went in the bowl, and then he went around again and ate the third one. We just starred at each other in amazement.

He stopped saying: Moma, Dada, hot, bye, hi, bear, and all of the other words he knew. He stopped paying attention to us. He didn't care if I was in the room or not. He started banging his head and screaming! He wouldn't point to what he wanted. He would seek out the sharpest corners in the house and begin to bang his head on them. He would do this if he was happy or angry. He would repeat "sounds" (because he lost all his words) over and over and over again. He refused to eat anything and just wanted a bottle...did not want the cup!

We took him to a GI doctor because at the age of one he only weighed 17lbs. The doctor's were a little worried. They tested him for everything under the sun and still did not have any answers. I was looking on the internet and came across the phrase "head banging". I thought to myself this is funny, mine does this ALL the time. I began to read the doctor's respone and then I immediately got off the computer.

I couldn't believe what I had just read, "Autism". The word kept ringing in my ears. What? Could it really be? No way! Not my little one. Isn't Autism where they sit in a corner, drool, and rock themselves? I was confused and this just couldn't be, no not in a million years. How did this happen? I decided to research this more because I had to prove to myself that he was NOT Autistic.

The more that I read the more I cried. I didn't want to acknowledge or admit it out loud. How was I going to tell my husband? How was I going to tell my family? I knew that everything they were mentioning decribed my Little Buddy.... poor social interation, poor eye contact, didn't make friends, a lack of spontaneous seeking to share emotions, delay (total lack of) speech , inability to initate or sustain a coversation, lack of make believe play, needed routines, flapping his hands, and the list can go on and on some more....

So what do I do now? I contacted the doctor which led me to Babies Can't Wait. They evaluated him and started therapy immediately, he was 15months old. We went to a neurologist who diagnosed him with Autism. I went home and decided at that moment I had to fight. It wasn't a phyical fight but an emotional one. I was going to have to be his voice. I needed to be his voice. I needed him to suceed.

Follow us this month to read more of my son's story...

Am I failing?

I knew when I started home schooling my son that I would have struggles, good days and bad days, not so structured days and ones that go exactly as planned. A lot of people thought I was crazy to homeschool him with the Autism factor. I prayed and and prayed and our decision was yes and God would help us. I had thought about what if he doesn't pass this or fails that and had a plan. Yet, I don't think I ever thought about the days that I would feel like I was failing him. Today was that day.

Math, Art, Social Studies, and Science all seem to come easy for him and he enjoys those subject. Language Arts and Reading Comprehension is difficult for him to pick up and right now we are struggling with adjectives. I sat for 30 minutes each day last week and explained, showed examples, wrote sentences and prayed with him. Since we didn't have school yesterday we picked back up today and did the exact same thing. So I was frustrated when he took his quiz and scored a 42!

A 42!?!?!?!

Really? a 42?

I went into the kitchen and cried.

I really wanted to go hide in the closet but I wasn't going to make it that far.

What did I do wrong? Am I failing him as a teacher? Would someone else teach him better? Was this just a fluke? Tears streaming down my face quietly as I search for answers and prayed for strength because I was going to need it along with patience and understanding today.

So we sat there and tried again. This time he made a 72. Better but still not what I expected.

Side not: I am not one of these parents that expects all A's. I know that there will be things that he masters and somethings that are difficult. I do expect his best work though. If he had made a 72 the first time then I would have been fine.

So what now? Well, I am not allowing him to take the test, at least not yet. He will have a ton of worksheets this week until I am satisfied that he KNOWS how to identify adjectives. He will be drilled and drilled all day and asked to put adjectives into his everyday sentences. I have to conquer this one so when the next bump happens then I can stand up against it with confidence.

I've decided never again will I feel like this. It is by the grace of God that we have gotten this far with His grace we will finish. Just because we hit a bump doesn't mean that I am failing him. It just means I may have to find a different approach. There is always more than one way to learn something.

Do you homeschool? Any experiences you want to share?

Is ignorance bliss?

I have written about this before but my son was diagnosed with Autism at 15 months. I love him with all my heart and it breaks my heart when I hear how people react to the word "Autism". I was recently around a person that kept making comments and hurtful things and as a mother I couldn't stand it any longer. How dare you say anything negative about child that is not yours? It really shows how ignorant you truly are when you continue to make comments after you know. To me it's no different than making fun a child with cancer. That is how cruel your actions seem to another person.
Many people will NEVER know what I go through during a week. You never see the meltdowns that he has behind closed doors. You never see how he cries because he thinks that he has no friends. You never see the dance he does before he has to go to the bathroom. You never see how he struggles to make a simple sentence with his spelling words. You never see the looks or hear the whispers that I get when we are in public. By the way these were just a handful of things off the top of my head.

Yet, on the other hand...You may or may not see how truly smart he is in just about everything. He is an amazing artist. He can build anything out out Lego's or paper. His most recent paper building is Bugs Bunny's Home...I will have to take pictures and show you later. He has a smile that will liven up your day. He is really sweet and tells me all the time that he loves me. He is an awesome helper and great with his sister. He is extremely passive so he isn't the first one to throw a hit. I have had to tell him to hit back - only circumstantial and not all the time. But if he doesn't then sometimes the other kids won't stop hitting on him. I have also taught him that there is no shame in walking away.

So unless it's your child that your exposing all their social faults to the public around you, then keep your mouth shut. Because when you are supposed to be the "grown up" it is definitely not cool for you to talk about kids that aren't yours in such a negative fashion. You don't know what that parent goes through and how hard they fight for their child. I am an open book and will answer any question. But you need to educate yourself before you speak. Your ignorance isn't bliss it is just plain ignorance.

Sorry, I had to vent...but mama bear came out and I couldn't breathe.