Out our own front door...(Journal#75)

...is the neighboring suburb of Blaine, where yesterday afternoon, yet another autistic child was found dead. Five year old Kaylie Dickerson wandered out of her home without her family knowing it and wandered across the street into a pond. As the autism community in this area just mourns the loss of another autistic child who wandered away last week and died, in which area people here even volunteered in those search efforts in neighboring Wisconsin, yet the tragedy happens again. While we did not know them personally, goose bumps and heartache for the family is what I feel.

According to news reports yesterday and today, even Kaylie's family had all the necessary things in place to make sure she would not wander away, according to police.
~I am guessing that they too, like us, have a security system that also alerts you when someone is coming or going when the system is off.
~I am guessing that they too have a visual PEC system card near the door, that visually tells the child to stop before going outside and ask an adult.
~I am guessing that they too have a fenced in yard.
~I am guessing that they too have some type of indoor sound/video system to monitor their child in the house when they are not in the same room.
~I am NOT guessing, because I KNOW that we are all a part of the same local autism community, I know that our children are both 5, I know that our hearts ache for them.

Out our own front door is a lake. That has always been a concern. But geesh, in the land of 10,000 lakes, that is a little hard to avoid. Out our own front door, is a reminder that we should not let our guards down as we have a little this year. Up until this summer, anytime I am outside with Sam, I would hold him by his wrist (tightly) because he would not hold my hand. We had to always do this because he did not understand safety and would dart in to traffic and always away from us like a toddler would do. I know people thought it was ridiculous that we always had such a grip on him, but he was unlike our oldest, who understood by 2 years old what danger was. When I say we have let our guard down this summer, it is because Sam seems to understand a little better his boundaries and rules at home lately. He still goes out of the house without asking, but this summer we have been less worried about always having our security system chimes on that even alert us to which door. As of today, they are back on.

Safety is such an issue with all of our autistic children. For some it is that they are completely non-verbal and are unable to express help when they need it, for others, like Sam, is that they don't understand safety, or perhaps the way we teach it to them. We can not play "that game" parents play when they need to leave a location. You know the game...when the child refuses to go with you, and you say, "okay, we're leaving, see ya later". Sam is just fine with that, and innocently starts walking away to do whatever he wants to do next and pays us no attention. It is not in the naughty sense either, it is purely that he doesn't understand that he can not be left alone.

Out our own front door...in our neighboring suburb, we mourn for Kaylie's family.

Out our own front door...and across the street, we have the reminder that you can never take our kiddos safety for granted.

Out our own front door...is a world we pray will keep all of our children safe.

A TWIST OF FAITH
Out our own front door, we are reminded of just how unsafe it can be for all of our children. Sometimes, no matter how prepared we are, the unthinkable happens. Once again, we feel unsafe. But there is one place we can seek safety and peace, for we all know that God provides that for us. Kaylie is now safe and back in his arms again.

We depend on the Lord above to save us. Only he can help us, protect us like a shield.
~Psalm 33:20

More than impressed...(Journal #48)

One of our greatest fears for Sam finally occured. As with many children with autism, the "fear factor" is minimal. Sam has always been fearless. That means street safety, heights safety, running safety, and the many other safety scenarios that don't exist in Sam's world. We have taught these things to him until we are blue in the face, we have used social stories, pictures, etc...

Our greatest fear has been that he would break a bone in the very near future (of which we have been surprised it didn't happen sooner), and our little guy did just that :(. Sam and his brother were so excited to see our visitors, that they were both literally running all over our wood floors. Let's just say that sleepers with feet + wood floors + running boys = disaster. Sam took the wipe out of his life.

One thing that I have learned in the Autism Bloggers ring, is that there are a lot of medical communities that are very unaware of how to work with children with autism...and to those friends, I truly do care and wish there were better doctor visits and opportunities.

However, Brent and I are more than impressed with our experiences in Minneapolis and the Twin Cities over the last two years with Sam. I have shared many times our love and trust for our pediatrician. And now, after Sam broke his "humorous/funny bone" (but it really wasn't funny) after hours, I have an even greater respect for our expanded medical community.

After Sam hurt himself, we weren't sure if we should go or not. As with many children with Autism, pain is part of their many sensory issues. For Sam, he doesn't respond to pain, rarely. So when he is crying continually, you know something is up. This he did. We loaded his little body into the van and decided to take him to Children's Hospital in Minneapolis. I have expressed in previous posts, that even while Sam is more verbal, he still can't always express his needs or hurts in detail. Often times, when he is hurt, he actually gets mad at that body part and will hit at it and hurt it more. So, when we arrived at the emergency room, I told triage right away that he was autistic. They were AWESOME! The wait was minimal, but they wanted to transition him as smoothly as possible. The doctor we had was great, compassionate and understanding of Sam's needs as well as hurts. The nurses and X-ray were incredible in the way they allowed Sam to transition from each event and to work with him. We are very grateful.

So, since they felt Sam's fracture was going to continue swelling, they did a partial cast, and the doctor referred us on to Gillette Children's in St. Paul, where we would see a pediatric ortho doc in the next couple days who would re-examine and recast his arm. We had that exprience today. I told the nurse ahead of time that Sam had autism. We found out later, that the doctor knew before our arrival as well, and changed the "usual" check in routine to make it easier for Sam. When arrived, the nurse couldn't figure out why they had cancelled him going to the height and weight check in (which takes place in a different hall and room), and why they had cancelled a visit with the doctor (which would take place in a different room), and why Sam was to be sent straight to the casting room where the doctor would see him there?

The nurse was very confused and said things had never been done this way before. However, she still took us to the casting room. When the doctor and his staff arrived, he was so gracious to explain that he wanted as few of transitions for Sam as possible to make the visit go easy for him, which is why he changed the "usual" check in procedure. Wow, I was impressed immediately. They put in a Nemo DVD right away, and his staff started interacting and entertaining Sam, so the doctor could explain everything again from the x-rays and the new cast that was being put on. I was more than impressed.

A Twist of Faith

Sam is doing great. He even went to see Santa for the first time in his life today before getting his new, bright green cast put on. Brent and I were more than impressed with Sam and his response to this whole situation. We are so proud. He did great!!!! So, I spoiled him today. He got a couple things he wanted, even with Christmas in sight. Oh well!!!! He has been freaked out by Santa the past 4 years, so we have never pushed it. We don't make a huge deal in our house about the Santa thing anyway, as it is a part of the Christmas Celebration for us, but it isn't THE Christmas celebration for us. But still, Sam surprised us in wanting to sit on this stranger's (from who knows where) lap. Sam continues to impress and amaze us each day. However, this is nothing compared to the impression God has had on our lives through this journey with autism.

Joshua told the people, "Consecrate yourselves, for tomorrow the LORD will do amazing things among you." ~Joshua 3:5

Careless? (Journal #33)

I am curious that if I wonder less, that means I care less?

What I really mean is this...I am learning to not "wonder or worry about" what others think.

I used to wonder...

...what the neighbors thought, when they can hear screaming from our house and yard a lot. Sam screams a lot still, even though he is more verbal. His tantrums are getting more frequent and louder the older he is getting it seems. Although really, we have decided it is just that he can do more with his body because he is bigger. When he is mad, he is so quick to slam doors, throw whatever is in sight and scream. We don't leave windows open a lot.

I used to wonder...

...what people thought when they see us chasing this little boy (who now looks like he should know better). He runs away like a 2 year old constantly. The other night, we were outside working in the yard until well after dark and Sam escaped us. It was scary to chase him in the dark and the thought of going through neighbors yards, not knowing what you may encounter. I felt like doing one of his dinosaur screams myself.

I used to wonder...

...if people thought I was a bad parent for having this "out of control" child in public (as it appears to others). Monday was the mother of all mother days. We had so many back to school errands to do. Unfortuntately the last event was to have brother try on 5 pairs of pants at the alterations store. Patience was not on Sam's agenda (nor should have been for anyone who encountered our long day, bad planning on Mom's part). I was trying to help Zach try on pants, then have him stand on the podium for the lady to mark, while chasing Sam who was cowering under every chair he could find, or running into the dressing rooms and slamming the doors. The nice lady just smiled and kept saying, "very busy boy, wow...very busy boy, wow." I tried to explain to her he had Autism, but she just smiled and said "that's nice". She speaks minimal English, but has been a great seamstress for us this past year. At least she was still smiling when we left. I hope that means we can still come back to pick up Zach's pants next week. I don't think she kicked us out.

I used to "wonder and worry" a lot about what others thought. I grew up in a family that expected us to be perfect little puppets in public. We were always cautioned to worry about what others thought of us. It was my parents best way of teaching us to be respectful. It can also cause severe paranoia! I have realized that I have expected way too much from Sam's older brother Zach for way too long. He is just going to be 9, but we have been making him be accountable for his behavior and interactions with his brother in ways most children wouldn't understand for the last 4 years almost.

I don't wonder anymore. We will continue to hold our son's hand in almost every place we go for his safety and our peace of mind, we will continue to just hold him and love him and not discipline him while he is having a melt down, we will continue to allow Zach to just be a kid and not expect so much, we will continue to ignore behavior from Sam that could escalate if we didn't and not worry about what others think. We will continue to shop for our needs and do errands, regardless of what people think about Sam's constant jabbering, loud voice or tantrums.

It has been hard learning to care less about what others think. But I have to for my sanity and the sake of my boys who just want to be my beautiful children. I just pray that by my caring less about what others think, doesn't ever allow me to be careless.