an autism journey

Archive for February, 2012

Yes, He Can!

My son read a book this week… all by himself. He is five, almost 6 years old. Nothing unusual, right? Most kids learn to read simple books about this age…. Yes, but most kids don’t have autism. Most kids weren’t relying on a Picture Exchange Communication System at age 3 or a speech device at age 4.

 Most parents aren’t told by speech therapists that your son may never learn to talk. Most aren’t told by doctors that there is just no way to know what  your child will be able to do. Hope for the best, prepare for the worst. Don’t expect anything “normal.” Most parents haven’t spent years telling doctors and therapists and educators, “Yes, he can.”

This week, he read a book. He spoke the words. He recognized them in print. He turned the pages and led his finger along the words. To those who thought he couldn’t…… to those who thought he was bound by a diagnosis, to those who thought his tests scores were much too low, to those who said “just worry about basic life skills, not things like reading and writing”……. You can take your words of “wisdom” and shove it. I would love to go back to each and every one of you and scream it once again…..”YES, HE CAN!” He still has a long way to go, but he is strong, his father and I are strong, and this is only the beginning ……“Yes, he can!”

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Standing For What Is Right…

Wondering what is going on with the Animals for Autism/Pepsi Refresh mess? The answer is nothing. Animals for Autism has pulled their facebook page (their website was already pulled down). Other than a mass email sent to some of the families weeks ago with no answers to anything, asking us to REQUEST our dogs if we still want them, no further contact has been made.  According to the last we heard from Global Giving and from Ms. Kaydus, dogs will be ready  for “delivery” starting this spring. I am not sure what the term “delivery” is supposed to mean. I have an image in my head of somebody driving by the homes of the children and pushing a dog out as the driver continues on. I am also unclear as to what kinds of dogs will indeed be available since they have not discussed training details with any of the families. Unless there is some mind reading powers I am unaware of, it seems impossible to train for a child’s specific needs without ever talking to the families about what those needs are.

It is now the middle of February. Flower bulbs are coming up in my garden as even the earth makes preparations  for the coming of spring, but preparations for service dogs remains unknown. Pepsi and Global Giving are sitting back hoping everyone just forgets about it. Other than my son (through the generosity of 4 Paws for Ability), it looks as though the children are going to be without the service dogs their families tried so hard to provide them with. Pepsi’s funding of the facility continues despite the fact that the families have been forgotten.

It seems as though the bad guys may indeed have won this particular battle. The ugly fact is we live in a fallen world, and sometimes bad things just happen to good people. It is not fair, but it is life. Despite that, I serve a God who remains in control and He has not forgotten these children. Perhaps things have not turned out the way we all would have liked, but the sheer fact that all of the families involved have been made aware before actually taking an untrained dog into their homes is indeed a sign of God’s protection.

 A child with autism is already at a heightened risk for things like dog bites  (Siberian Huskies rank #4 as the breed most likely to bite) because of their unpredictable sounds and movements that could easily spook a dog that was not properly bred and trained to work with such a child. Our children could have actually been placed in danger from taking one of these dogs. One of the things most of the families were counting on in a service dog was for the child to be able to be tethered to the dog when out in public, so as to help prevent the child from wandering off, but still give them a bit more independence by allowing them to walk with the dog and adult team rather than ride in a special needs stroller. Can you just imagine an untrained dog out in public tethered to a child and seeing something as simple as a cat that it would like to chase? The results could have been disasterous. What about a child having a meltdown, screaming, kicking, hitting their head on the floor because the world has become too stressful and a dog sits there beside them…  an untrained dog that has not been properly breed or even socialized…… As terrible as all this has been, it could have been much worse.

So what now? Some of the families have been burned so badly in this that they have decided they will no longer pursue a service dog at all, others are making preparations now to find another organization and sit on a waiting list for years. Some are making plans to raise needed funds, a difficult task for families that had already asked their communities to support them when they were raising funds for a service dog from Animals for Autism or for families who were publicly portrayed as receiving a free service dog already.  Almost a  full year has been wasted for some of these families. A year that could have been spent obtaining a real service dog.

Why we are we all so upset with Pepsi and Global Giving? Because they changed what the funding was to be used for and when we brought our concerns to them, they assured us everything was fine. They told some of us we  simply had a personal problem. I myself was actually told by a Pepsi representative that they were, and I quote, “honored to work with her.” They told us to just sit and wait…. And be quiet. When the truth came to light, they covered things up rather than admitting a mistake. They are large organizations. They are hard to fight. They have millions of dollars at their disposal. We are just a handful of special needs families. The odds are on their side, but sometimes standing up for what is right is not about winning or losing…. It is about what is right.

My family is boycotting Pepsi. I ask for the rest of you to join us in this boycott . Until Pepsi pulls their funding from this “project” and stands for what is right, Pepsi will not enter my home. I have seen in the news other projects where they retrieved their funds, so they can do it in this case as well.

 I am just one, but this one can affect another one who affects another one, and together we CAN all demand better for the families in this mess. I was just one when I voted for Lea Kaydus to get a $50,000 grant from the Pepsi Refresh Program. She needed my help then, and I made a difference (an action I regret in that case). Hopefully this time I can make a difference for something good. Perhaps it will not matter to Pepsi at all, but at the very least, I will take a stand for what is right. I will be saying to my son and the other children involved…. You matter to me. After all, the children are what this was all supposed to be about.

Autism Stinks

Well, just like I knew it would, autism came back to slap us in the face today as if to taunt us by saying,  “I am still here! I am not going anywhere!”  When dealing with autism, there are good days and bad. Perhaps that is just life. Sadly, for every day that is really good, there is an equal amount (if not more) of days where autism just plain stinks. Today is one of those days.

We went  to church this morning, just like we do every Sunday morning, trying our best to add normalcy to our lives. However, the people, the sounds, the sights, the expectations, it was all too much today. Samuel spent most of the morning in the preschool room sitting in my lap clinging to me with his hands over his ears and his head buried in my chest while the other children played, and talked, and laughed. He tried, he really did. He even attempted to play with a couple of the other little boys in the room, not an easy task for him, but WHAM… there it was to smack him back into reality… AUTISM. He just wasn’t sure how to connect. The other boys, bless their hearts, they tried too, but it is very hard for kids aged 3-5 to understand why when they talk to the boy beside them, he won’t answer, why he makes odd noises, why he flicks his hands, and taps the toys..  and so they move on. They leave behind a very lonely child so wanting a friend, a playmate… a child wanting to fit in and find his place in the world.

Then came music time….ugh… an especially difficult thing right now. Samuel has always loved music, until recently. He still loves to sing and for someone to sing to him, just don’t add any sort of instrument or cd to it. I don’t know if it is the frequency or the added chaos that it brings, but it is too much. On top of that, it is hard to keep preschoolers down and so the others get a bit excited during music as they sing and jump  and dance around…. Another ‘no no’ right now. Samuel prefers everyone sit in their own quiet space… not too awful close to his space. Big sister had to come to the rescue to take him away from the group for a few quiet moments and a few tight hugs. Thank goodness for a big sister who understands what her brother needs.

And so the day went on… no matter what he tried to do, it was a challenge today… everything just seemed too tough until he finally just gave into the tears that he had been fighting back all day and he cried… and cried… and cried. The horrible crying that just comes from a child knowing how hard the world really is… the kind you just can’t console, the kind that truly breaks your heart, because you just can’t make it better.  And so his dad and I just held him and told him we loved him and we would always be here for him. You can’t tell a child with autism that everything is going to be ok, because it is probably not going to ever all be ok. You can’t tell them to just cheer up. You can’t bribe away the sadness with candy or cookies (although the offer never hurts). Children with autism know real hurt, real sadness, real loneliness, real pain. Something a 5 year old just shouldn’t know. Worst of all a child with limited communication skills can’t even talk about it. It leaves the child insecure and frustrated and mom and dad helpless.

So… today was just about surviving. It was not a thriving day…. Just a surviving day. But, maybe, that in itself is a victory. Today, my son survived autism. That will have to be good enough. Tomorrow, we will try again to thrive.

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