Recalling things...(Journal#80)

I can easily recall the first feelings I had that Sam was possibly autistic. I can easily recall the first diagnosis, the second, and third...all to confirm that Sam had autism. Watching Oprah yesterday, who did her first show on autism only a few months ago, and followed up already again with Tuesday's episode, made me recall some of those feelings.

Seeing Jenny McCarthy on Oprah yesterday was nice, because it helps get more awareness out there on autism, and helps people understand our kiddos. What was harder for me, was her constant word use of "getting my son back", or that he is in "recovery". I guess for me personally, I have never felt the need to get Sam back, or to cure and recover him. I feel that Brent and I have always accepted Sam for who he is and have worked with him to help him function at times when it may be hard for him. Yes we have had him in intense therapy and programs and speech and OT and tri-monthly medical assessments to monitor his medications. I consider these methods to be tools to help him function in life better, but not change who he is. If you have poor eyesight, you help your eyes by getting glasses. We are just helping Sam along the way.

I guess what I am trying to say, is that we only know Sam as he is. How God blessed him to us. We know nothing different, nor do we want anything different.

Sam has a real hard time with word recall. Some of his worst metldowns occur because he can't recall or remember the simplest words. The other day, we had a 45 minute meltdown because he tried so hard to remember the word cup, and couldn't. And the problem arises when I give him his word choices, and I don't choose the right word he has fixed in his head when he hears it. Here is how it went:

As Sam stood by the refrigerator, he swayed back and forth saying over and over "I need....I need... I need"

I tried to give him some good wait time to recall on his own first, but it is kind of like a balancing act, because if you wait too long before giving him a couple of choices, the meltdown starts, and if you give him some word choices too early, you will have a meltdown because he wanted to think of the word on his own first.

I chose to wait this one out.

"MOM...I need...I need...I need.....oooooohhhhhhhhh" as he then falls to the kitchen floor on his tummy and pounds his fists onto the floor.

I then drop to the floor at his level and look at his face and say "Sam...use your words, not your scream. Mom will help. Do you need food or drink?"

He quickly screams. "drint".

"So Sam, say ...I need drink".

He then rolled over to his back kicking and screaming saying, "no drint".

I am quickly giving some drink choices to see if those are the words he was trying to recall. Of course, to no avail, were any of them right.

Long story short. All along he was trying to say, "I need cup". He was going to get his own water. He just needed a cup.

It just really makes me sad sometimes, when he can't recall simple words like that, and when I see the frustration in his eyes in trying to recall the correct words or phrases. Yes all of those things can make me sad for him, but it never makes me want to change who he is with his autism. I guess you could say I would never "recall" my boy and send him back! :)

A Twist of Faith
Sam and I have been working on some of his vocabulary cards the last few weeks with many of them containing animals. We started this silly game, where Sam says, "What if I was a snate (snake) mom?" and I always follow up with "I would still love you the same Sam."

Well the other day he laughed and he followed with, "Mom, what if I was mouse?" as he knows I HATE them. I gave him the response that I thought he wanted.

I faked a scream, "ooooooo Sam, I would run around the house screaming." Sam very quickly put me back in my place. "MOM!" he said, "You ted you dove me anyway!" (you said you'd love me anyway).

Now tell me he can't recall things! Thank goodness he remembered I will always love him no matter what, and my heart knows that he also knows that God does the same for him.

But Zion said, "The Lord has forsaken me, my Lord has forgotten me." Can a woman forget her nursing child, and show no compassion for the child of her womb? Even these may forget you, yet I will not forget you. See, I have inscribed you on the palms of my hands…. (Isaiah 49:14-16)

Reduce, Reuse, Recycle...(Journal#78)

We pulled in the driveway from our trip to the store. As I get ready to push the garage door opener, a screaming shrill of excitement rips through the van. Sam sees it by the front door, left there by our UPS delivery driver.
"Bots, my bots mom" Sam screams.
"Bots, my bots, my bots" he continued as Zach and I unbuckled and went into the house.
"Det my bots, det it!.
"Sam, let mom bring in the groceries and then I will get the box," I said trying to calm him and to get us in the house first.

Most kids are excited about boxes, yes, I agree. Especially when they are babies. They always love playing with the boxes their presents came in rather than the present itself. Sam has stuck to this action since he was a baby.

Reduce...I wish we could reduce the clutter sometimes that Sam accumulates. He would have his room full of boxes and other "garbage items" if he always had his way. He tapes the boxes together for his creations with our blue painters tape. An important staple in our house.

Reuse...Once Sam has recovered a box from the garbage or recycling, he reuses it over and over again. Creating one masterpiece right after another. It is amazing watching what his little mind comes up with. The challenge is that no one can touch it or come near it for days. And if you even bump it, look out!

Recycle...We can't throw ANYTHING away. He actually goes to the garbage in the kitchen a couple times a day to see if anything of value has been discarded. When he finds other objects of interest, he then takes them to his box sculpture and tapes them on with the blue tape. This is a daily event at our house. This child can recycle and make use of anything.

While boxes can become irritating in our house because of the way Sam can take over our house with his box sculptures, they are an incredible blessing. They are a reminder to us to reduce the attitudes that clutter our minds, to reuse the things in life that make us happy, and to recycle and share those moments with loved ones.

A Twist of Faith
I love the saying that "God doesn't make junk". He makes use of everyone and everything on this earth. He is the great recycler. If we just reduce the focus on ourselves and recycle the love He gives us everyday, this world would be an amazing place. Recycle meaning to witness and share with everyone!
"Put out into deep water, and let down the nets for a catch" Luke 5:4

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

Ch-Ch-Ch-Ch-Changes.....Part 2 (Journal #60)

“When you’re finished changing, you’re finished.”—Benjamin Franklin

....as David Bowie sang, "Ch-Ch-Ch-Ch-Changes...." I hope are coming our way. We have made some changes with Sam this week.... (This was the beginning of my post on February 28)

Just wanting to do an update since we have started Risperdal. Have received lots of e-mails from those of you who have had experience with it, and we want to thank you all for them.

At this point, we are still in the honeymoon stage. Sam started it a month ago next week. We have our follow-up appointment with our pediatrician to see how things are going next Friday.

Dosing:
Sam is on .5 mg a day in tablet form. We have the option of increasing to 2 tablets a day for 1.0 mg. We started out with low dosing, increasing every 3-5 days to where we are. We have been at this level for a full 2 weeks. If things change, we will then increase to 1.0 mg a day.

The honeymoon:
We have been "amazed" at the difference seen in Sam. We are pinching ourselves and almost trying to be a little apprehensive, so that we aren't too disappointed if the honeymoon ends. The two behaviors we wanted it to address have worked at this point (knock on wood).

Behavior 1~ When he is having melt downs (was averaging 2 major ones a day that would and could last at least an hour each time), he has become very violent, and quickly hurts anyone and anything in his way.
Ch-Ch-Ch-Changes~ We have had only 2 items thrown in a month and nobody else hurt in that time (big brother, usually the target, is very grateful).

Behavior 2~ During his melt downs, he has become self injurous (not uncommon among autistic children), but to the point that they were increasing in degree. They would range from head ramming, hitting self, to throwing himself down the stairs.
Ch-Ch-Ch-Changes~ He has not hurt himself once in a month.

It was incredible in church on Sunday to hear people telling me that they were noticing something different about Sam. He seemed happier they said. They also commented that it appeared as though he were interacting more too. I speculate that he isn't feeling the anxiety and frustration that would lead to the melt downs. Hence, we have a little boy feeling more comfortable expressing himself with others, even if they don't understand him at first and even if he isn't sure how to.

It is not that this is "the miracle drug", and I know medications are not the route for everyone...but for us right now, we are thankful for the Ch-Ch-Ch-Changes. We continue with our other therapies as well, but this has been a change we have waited for.

A Twist of Faith
Just as autism is treated in many forms, behaviorally to medically, there is not just one tride and true method that provides therapy and treatment for this disease. Each child with autism has a variety of symptoms and degrees of each. The point is that there are many ways to work with the whole child.

Faith is the same. There is not just one way that we seek God and worship him. There are many. What is important is that we intentionally seek him out in all areas, including daily prayer, worship and service. We have to be many things to him, not just one mode.

Medications aren't our only source of work with Sam, and prayer, worship, or service can't be the only source of work for God. It must be many combinations in all those areas, and in many ways, that is in constant service. For one to say "I pray", that is good enough, is never good enough (that is just my personal belief). We should always have Christ as our focus in all that we do.

We know that all things work together for good for those who love God, who are called according to his purpose.

-Romans 8:28 (NRSV)

If You're Happy and You Know it...(Journal #58)

...thump the person behind you. Forgive me, but that is what I felt like doing today but knew better not to. Why? I will fill you in on that later.

Because the best part of today was the dream date I had with someone I love dearly. Sam. We had two tickets to the tour of "Go Diego Go Live". We have had them for awhile and have been counting down. The performance was in the Hennepin Theatre District in downtown Minneapolis, at the beautiful State Theatre, shown below. We were only a few rows from the stage. It was awesome. Sam was super happy. He has two extreme's of happiness that one must know about him. One is the "super silly, spinning around, smiling, laughing, can't stop moving" happiness. The other is the "this is serious, don't talk to me, don't touch me, don't sing to me, just let me be to enjoy this" happiness. Both of them are as equally happy times for him, of that only a mother can know.

So, the usher gets us to our seats, I just sit down, and there is a tap from a father behind me, "Mam, could you please change seats with your son so my daughter can see?" I quickly nod my head and exchange seats with Sam. I place my hands under his arms to lift him so that it will be smooth and quick, but Sam doesn't want to move from his seat. I turn back to the gentleman and tell him that it may take awhile to get him to move, that I would try again in a little bit. Under his breath I heard him say, "and who is the parent here?" I chose to wait before trying again, because I do have a little experience with my son, and while yes, I am the parent, I don't think the man behind me would like to hear the shrilling "noooooooooooooo" that would emerge, as well as some jostling of the body parts from a meltdown, that could result in elbows reaching the row behind us where he sits. (Editors note: however, even though we are a week into Risperdal, and things have been great, I didn't want to test the waters.)

I let Sam sit, for a few more minutes. I thought if I asked him if we could take his coat off, that it might losen him up a bit. He firmly told me no "toat on". Now, if you didn't know Sam, and you looked at him compared to every other kid in that theatre, you would have thought there was something different about him, but in my eyes, it was just his different way of thinking. I knew exactly what he was thinking. He had looked forward to this day for a long time. He was so excited. He was enjoying it and taking it all in. The lights that pulsated around him. The familiar music pounding from the speakers on stage. The fuzzy seat that rocked up and down. He was "seriously" enjoying it, even though his face seemed intense. Okay, so back to the changing of the seats saga. I found my moment to slide him over to my seat with ease, at which point he finally agreed to take his coat off very slowly. I refused to look at the row behind us to acknowledge our compliance.

As the show continued, parents and kids were up singing and dancing together. Parents singing the Diego theme songs, smiling with their youngster. Sam didn't want me to smile today. He made that very clear every time I tried to look at him. So I didn't push it. I just watched him when he didn't think I was looking. He remained in his seat, just watching all the motion around him, but you could tell that he was just taking it all in the way he wanted to. While those that know me, know that I don't just like to sit, and that I too would have rather been up singing, acting silly and having fun. This little ol'e elementary teacher knows how to act silly with the best of them. But I needed to be what Sam wanted on his special day. I was just fine, until...

...intermission...and the wonderful gent sitting behind me just couldn't stop being "father of the year".
"Wow, you two sure know how to have a good time and live it up! He doesn't seem real happy to be here. " he said.
I replied, "On the contrary, he is delighted to be here. He is just taking every ounce of it in. That is how he enjoys himself. "
I turned back around and asked Sam if he wanted to go for a walk. Quick exit needed before I started talking snitty.

What has Sam taught me? I have mentioned before that he has taught me to better understand the diverse ways we think and communicate and to respect everyone's differences in regard to that. I have learned that Sam can be happy but look serious. I respect how he wanted to share the joy he had of seeing Diego today. So therefore, I must respect that "father of the year" just has not had the opportunity to experience many people in his life that are different than himself. And for that, it is not his fault that he doesn't understand my son nor me in our short encounter. I am not learning anything from Sam and his Autism, if I can't apply it in life. Dear "father of the year", I do commend you for being a dad, who took time to take his daughter to a great show, I commend you for wanting to live and enjoy life to its fullest, may you never lose that. And I, I will respect you for who you are and what you said, not what I would have preferred you to be or to have said.

A Twist of Faith
If you're happy and you know it...shake hands and make peace!!
Maintain good conduct among the Gentiles, so that in case they speak against you as wrongdoers, they may see your good deeds and glorify God on the day of visitation. 1 Peter 2.12

Ch-Ch-Ch-Ch-Changes.....(Journal #57)

“When you’re finished changing, you’re finished.”—Benjamin Franklin

....as David Bowie sang, "Ch-Ch-Ch-Ch-Changes...." I hope are coming our way. We have made some changes with Sam this week....

As I have shared some in the past, Sam has some pretty aggressive and violent melt downs. The above picture was the look I received before a huge meltdown on vacation this summer. Shortly after this pic, he threw his items and went running away through a crowd. It happended because I wasn't walking the way he wanted me to walk along the crack in the sidewalk he was following. I couldn't understand how he wanted me to walk, and BOOM! We have aggressive/violent meltdowns a couple times a day, and they can often times last as long as an hour. This past year they have increased in length, aggression and frequency. While having meltdowns is nothing new in the autism world, these meltdowns have been changing in complexity for us. Sam will go from one extreme emotion to another in seconds, and usually with no warning. Most of his incidents are related to communication or frustration on his behalf. While Sam is verbal and uses language, he doesn't always know how to communicate. He can't tell me when he is sick, or his specific needs at times. Sometimes it is a simple word he can't remember to say. Like the other day, I had given him a cup of yogurt for a snack but forgot to give him a spoon. He came up to me and kept saying over and over,

"I need, I need, I need..."

and of course I would respond with "what?"

He would then respond "don't know, you know" "det it for food!" (get it for food)

"I need, I need, I need..."

"Sam, what do you need?"

"don't know what talled! Det it! Det it! I need, need, need!!!"

At that point I had just figured it out, "spoon?"

Too late. "Yettttthhhhhhhhhh" (yes) Sam screamed with agony. "I fordot, NO MORE!" He forGot how to say spoon, now he was mad, so forget it, he wasn't even going to eat.

So, next came the chair, then the plant, then all the picture frames and head ramming. That is his typical order of destruction when in the kitchen area. He quickly goes after the wooden kitchen chairs and throws them backwards onto the wood floor, he rounds the corner and grabs my plant, pulling it by the branch across the floor until the dirt spills, then he proceeds to every picture frame in site and slams them face down, following with his usual head ramming or banging. All of this in a matter of explosive seconds out of nowhere.

So, then you may say this to me, "you know what happens, move things, prevent it, stop him, then consequence him."

That is so much easier to do with a neurotypical child. If it were our oldest that did that, we would, because he would learn the first time he had to clean up the dirt, pick up the chairs, etc...that the behavior was not acceptable. Zach would understand the first time.

With Sam it is different. (Which yes, creates another whole post someday on the challenges of having different rules and expectations for children and siblings of those with special needs. Unfortunately, it could be a book of explainations.)

I won't put away the picture frames. They are pictures of family near and far, and it is an important staple of our family and how we share memories. They will continue to get slammed and broken by Sam, and I will continue to buy cheap wooden ones that are replaceable. The kitchen chairs....well, that would be a pain in the butt to not have those out. So, that leaves the plant, the easiest thing to move. Now that may just be me being lazy!!!! :)

This example of a melt down is actually quite mild for what his are like. He has attempted to hurt himself many times, which self-injurious behavior is also common with our little autistic kiddos, because they get so frustrated and don't know what to do. Sam will actually bang his head into things or sometimes attempt to actually throw himself even down our stairs. He will bite, kick and hit when being restrained (who wouldn't) from hurting himself or others. We have created a safe place for him during these situations in his bedroom. But...our concern has been great over the last several months.

Hence, this past Monday, Sam had a check up. And...we finally started the "autism drug" of Risperdal. I could hug and kiss our pediatrician. We have had 3 days without ANY meltdowns. Two of those days have seen zero beginnings of any tantrums. The first day, we had several start, but I was able to redirect them, which I haven't been able to do for over a year!!!!! I know I shouldn't get too excited yet, but this is HUGE!!!!! I can't wait to see what kind of effect this will have for Sam. He seems a little different too, more receptive, more at ease. I know that there are many people in the autism community, who would not seek the use of medications to change behavior in our kiddos, and I respect that. But, if this helps take some of the frustration that Sam has to encounter everyday away, it will be very worth it. Oh yes, "ch-ch-ch-ch-changes" are in the forcast. Changes that we look forward to.

A Twist of Faith
Sometimes we are afraid to give our lives fully to God. We are afraid, because that would require a change. But, when we do, I can only say that the change is truly for the better.

Jesus said, "If anyone is thirsty, let him come to me and drink. Whoever believes in me, as the Scripture has said, streams of living water will flow from within him" (John 7:37-38)

Answers not needed for Shalom (Journal #56)

It was just the boys and I this Valentine's as we missed dad, who was out of town on business. So, I had pledged that it was "all boys, all night". No interruptions from the outside world, no doing housework on their time, no "have to" stuff, just me and my boys.

It all started out fine, as Zach had some time to enroll his latest Webkinz that Brent and I gave him for Valentines. He was so excited that he now has 4 of them. He also was trying so hard to show Sam how to set his Webkinz up on the computer, but Sam paid no attention. He just sat on the floor by his brother lining up his legos and blocks. Zach was trying so hard to pull him in, and Sam didn't even flinch, or notice his brothers desperate attempts. I say the evening started out fine, it was peaceful. A shalom sense that we hadn't had for awhile.

So, it was my fault, I broke the silence. After a couple of phone calls (that I already had said I wasn't going to take, but in these cases they were both important family members) I got on the floor and tried to draw both boys in together for play. They started a little, Zach being so patient, and Sam dictating who would touch what and when. I decided to slide back a little and watch it pan out, in hopes of it turning out a little more different than it did yesterday when Zach tried to build forts with him. But no, same ole' thing. Sam insists on everything his way, and Zach desperately wanting time with his brother, concedes, just to have time with him. I am always so impressed with Zach.

As the night wore on, I was debating how to transition Sam to bed. He has been on Clonidine for a year now, of which his larger dose is saved for bedtime to help him sleep. Sam's sleeping history prior to this was his being awake from midnight or 2AM until morning. Ever since Christmas, he has fallen back in this pattern of waking up, except this time it is with very agressive melt downs. Sometimes I think they stem from dreams, other times I don't know.

So, my transition for Sam's bedtime is forming in my head, but Zach also wants my time to listen to him read his Series of Unfortunate Events book.

I don't have time to make a plan, as Sam had already started. Started... what I sometimes call his "full body stim" time (while you won't find this definition under classic stereotypic behaviors of stimming). Sam's stimming usually consists of smelling and sometimes licking objects, and tacticle stims, with the need to rub his hands on other peoples skin. The more vestibular stims are his "full body" ones. Sometimes this is just pacing back and forth while talking, talking, talking (could seriously last hours while he completely retells his most recent movie in story form but with exact word detail), or sometimes he does what we call "head ramming", because it isn't just head banging, as he gets running starts and rams his head into whatever object or person repetedly. The latter is what occured tonight for almost an hour and a half. I could not stop him tonight until he crashed from exhaustion. Deep pressure didn't work, his weighted blanket didn't work, his "soft area" of his room didn't work, the big pillow/bean bag method didn't work. It went on and on and on. He was running all over the house ramming his head.

The fact that he hardly ever feels pain didn't help tonight, as several times I had to stop him from ramming his head into the hard doors, walls and bed frames. He just doesn't seem to care what happens to his little body when he engages in this.

After a full hour and a half of trying to keep him safe, and keeping his brother in a seperate part of the house self entertaining, we were both exhausted. His little body finally collapsed on my legs on the couch. As he instantly fell asleep, I just sat there looking at every little bone in his body, because you really can see them. He gets that from his dad. I was utterly amazed that something wasn't broken from all the thrashing his body took during this episode.

All I can think of when we have these episodes is how can we protect him? How can we keep him safe, and his brother safe when these incidents occur. Tonight, in my attempts to restrain him a couple times to keep him from banging his head on the corner door frame, he bit me. I really don't think he knows he is doing it until well after the fact. But while it is going on, there is some need trying to be fufilled, I just wish I knew what?

My Shalom for the night was gone. Or was it? Maybe Sam needed to have this "head ramming" episode so that he could have peace for himself tonight. Maybe he needed to get this out of his system so he could calm himself to sleep? That I do not know. What I do know is that I still respect his needs, and will never hate what he does, even though it is exhausting. It is this video below, from an autistic person whom I have learned much from over the last year from her blog, that helps me understand. While Amanda is non-verbal, she can definitely communicate. You must watch this video she made last month in response to "Ashley X" . Watch it in its entirety to get the full understanding. Amanda translates towards the end of the video. It has helped me to understand in a much deeper way what stimming does for Sam, why it is so important for him to react to every little part of his environment. Perhaps the most important reason, as Ashley writes, is that we don't need answers for why he does some of his things, we just need to understand. That will give him and us the Shalom we need without an answer.




A Twist of Faith
Shalom doesn't just happen, it requires us to seek it through understanding others and the world.
Seek peace and pursue it! ~ Psalm 34: 14

What's so wrong with that? (Journal#54)

Saturday Sam had his "friend party" for his 5th birthday, even though it is not until Friday. Sam had clear direction on what he wanted for his party.
"C tan tum"
" D tan tum"
"E tan tum" (as he listed who would come)
"Dat's all"
"Nobotty ting happy birty" (and absolutely NO One will sing happy birthday, he hates that, he always says it hurts his ears).
"We hab piwut sip on da beat too. Hab to hab a beat." He thinks we have to have the party on a beach where there is a shipwrecked pirate ship. Hmmmm...that one we will need to modify.

Simple enough, we can do everything else! Two of the three have autism also, and are in his class at school. One is a little 3 year old neurotypical friend from church. I will call her Grace. Because, that is what she provided all day...Grace. Only one of his autistic friends was able to come. It was a perfect size. Three counting Sam. There is that little rule of thumb you know, that you should only invite one child per year. So at this stage of the game, 5 friends might be appropriate. We did not know all of the needs of Sam's autistic friends, so we decided to keep it low key and at our house and stick to what was best for Sam and everyone.

The theme was a pirate theme, one of Sam's interests of late. We went on a treasure hunt all over the house to find parts of our costume, the hat, the earing, the eye patch, the parascope, and the last thing was the treasure itself. We stuck with Sam's wishes to not sing happy birthday. We had a ratio of 3 adults to 3 kids. Sam had 3 or 4 melt downs that included screaming and throwing things. Brent gently took him to another room each time, and I continued on the treasure hunt with the other kids. It made me kind of sad that he was missing his own party at times. He would always come back and join us when ready, and the other two didn't even know he was gone.

After the party, his school friend went home, but "Grace" the 3 year old friend from church stayed to visit with her mom and us. Sam had quickly set up his fort. He takes his toys and lines them up and builds them to enclose him, along with a door. He has obsessed about doors since 2. After he creates this little fort of toys. He sits in the middle of it and won't let anyone come near him. He does this all day with his brother usually, and at church as well.

Here we go again. Poor Grace just wanted to come in and play with Sam, but no. She was so gracious. She kept coming over to his door smiling. "Sam can I come in?" "Sam can you play with me?" He would growl "NO!" She would smile, say okay and go play with something else for awhile. She would entertain herself by getting toys from the toyroom and bringing them out to where Sam was. She would parallel play beside him until her next attempt. However, when she wasn't looking, Sam would snatch her toys she brought in and add it to his walls, as if to build them up higher. If she found out before I could get to Sam to give them back, again she would graciously smile and say "It's okay Sam, you can have it." Wow! Gracious for a 3 year old. She just wanted to be with Sam so bad, she did not care. Times like this, I wish he were more neurotypical, to experience the joy of playing with a friend and sharing that love. What's so wrong with that?

I also get a little weepy, when I think back to all of the friend parties we have had for his big brother. We could plan them most anywhere with anything, animal parties at the Nature center, Chuck E Cheese, bowling...Sam very much so wants those things too. He expresses it, but it is too overwhelming for him at times. When he had his melt downs on Saturday, I kept flashing back to Zach's 5 year old space party and his friends. Zach laughing and being the center of attention and loving it. Zach wanting to play with EVERYONE. I wanted Sam to feel that too. What's so wrong with that?

Yes, Brent and I make accomodations for Sam to help him and do what's best for him. We will always do that. But as much as we love him and do that for him, we too are human, and I believe it is okay if we wish and wonder what it would be like if he didn't have Autism. We are not dehumanizing him in anyway by doing so, it is just us thinking. If people don't ever question the opposite of who they are, they don't ever appreciate or have a deeper understanding of who they really are. What's so wrong with that?

A Twist of Faith
God made us all human. And for that I am forever grateful!
"All have sinned and fall short of the glory of God" (Romans 3:23)

In a Matter of Seconds (Journal #41)

It happened so quickly, and always does. In a matter of seconds, Sam can change the layout of any room. I don't say it out of frustration (although at times it is), I say it out of amazement. Tonight we returned from delivering Zach's wreaths to people who ordered them through his Cub Scouts, to find a message from grandma on the machine.



Sam had started playing with some of Zach's flash cards, just one pack of some math problems at the time. He was having fun looking at the numbers and was sitting at my feet when I called Brent's mom back. Sam was calm, not making noises, playing at my feet.



One of Sam's stim's (as our family calls them) or stimming activities (check out my blog friend Kristina's "friendly" wording and writing about it) is constant motion/movement/lining up of objects. Sam has to keep moving and organizing at all times. The only time he really sits still is when he is really hungry, or watching his latest TV fav which is Mickey Mouse Clubhouse right now. It is a matter of seconds how quickly he can take over a room with his organizing or lining up.



Hence, the few seconds at my feet with a deck of cards, turned our living room into a quilted array of flashcards. I no longer had walked into the kitchen while on the phone, to only get some water, to find this when I returned. Cards lined and organized all over the floor. He was arranging everything meticulously. Chicago, our dog, made the mistake of journeying through the maze and accidently shuffled some cards. Sam had several shrieks and yells to share with her over that little episode. While everything looked just thrown about. He was very carefully placing each card in a specific place, and knew when one was turned slightly wrong in his eyes.



In a matter of seconds things can change. Can change for the better. The past couple/three years would have found us dealing with anguish and screams at the thought of cleaning them up. He would not let us touch his arrangements for days on end, nor would he. They were his "shrines in a glass box" as we called them. But we could never think of cleaning them up. But tonight was different. After allowing Sam to walk around the outside of them several times, to lay on the floor to get a floor view of them, and after he sat beside them for 20 minutes just looking at them. I gently told him that we would clean them up together before bed. He didn't scream yell, or anything. I went into the office, came back out seconds (really a couple minutes) later, and he had sorted all 5 decks accordingly into 5 piles and wanted help to put them back in the boxes!!!! All in a matter of seconds. That's my boy:)



A Twist of Faith...

In a matter of seconds life can change. In a matter of seconds this past week, we had a high school classmate, and a friends brother-in-law die in seperate car accidents. Both young, both had children, one had a baby on the way. Life is a gift from God. What we do with it and how we live it can be taken in seconds. It frustrates me greatly how it always takes times like this to remind people about not waisting the time God gave us. How important our time is here on earth. Why can't people just be focussed all the time on what God wants us to do, and not wait for these dreaded moments to be reminded. We get caught up in our own wants, needs, sadness, desires, dissapointments so much that we forget that this life is not about us. It is about what we do for others, how we help others, how we reach out to others before it's too late, that makes all the difference in this life. Reaching out to help and do for others can change a persons life...in a matter of seconds.



It is God himself who has made us what we are and given us new lives from Christ Jesus; and long ages ago he planned that we should spend these lives in helping others. ~ Ephesians 2:10

I don't care what the world thinks...because I have a proposal I'll never forget! (Journal #39)

I don't care what the world thinks...especially on an outing like today. I had a lot of errands to do when Sam got off the bus today. So, I thought we would try going out to lunch together first to set the pace. We went to Culver's (he loves their hot dogs). He was awesome! After ordering he asked me, "I pit?" (pick the table we would sit at). I told him yes, and his eyes were all excited. He walked a little dance around the dining area (which was getting very full as we were there at noon). He put his little finger his cheek, as if to say "hmmmmmm" like his brother does, and then he found a table. I then asked him if he wanted his own ketchup, because he likes to dip his fries in the little cups they provide. He politely said, "no tants". So, I went about my business putting napkins and such on the table, then awhile later, out of the blue he said, "I tare withhhhh (we're working on "th" in speech therapy) mom" (he wanted to share my ketchup). I was more than happy to share.

Next stop, the Scout Shop, to get badges for our Cub Scout den I lead (yes, I am a den mom, never would have thunk it, but is a way of supporting Sam's big brother). Something happened on the freeway on our way there. I do not know what, but watching Sam's face in the mirror while I was driving, was telling me something, I just didn't know what. Every time I would look at him in the mirror, he would scream, "ahhhhhhhhh". His eyebrows were very tight. I asked him to use his words to tell me what was wrong, or what he needs. Another "ahhhhhh"! I was afraid to take him into the district scout office, as it is always a very rigid, "this is the way you do it type of place". I HAD to get the badges though, because our pack meeting was tonight. It is a big night for each den, as they get their adavancements and badges once a month in front of almost 80 scouts and parents. It is a big deal. .....................I gently unbuckled Sam when we got there, like not wanting to tip a basket of eggs. There was a little "grrrrrrr" under his breath. He just sat in his seat, not getting out. I told him to come with mom. Finally it looked like I might get some words! "Too bite. Turn it off" (he was talking about the sun). I showed him how to cover his eyes like we always do to walk in. His face straightened back to a firm look and in we went. He did not say one word the whole time there. It took awhile, as I had to fill out papers on the boys getting the badges, and then get them, and so on. The whole time he just laid flat on the floor by me at the counter. People kept staring at me, like to get him up. But...he wasn't in anybody's way, he was making no sounds, just staring at the ceiling. But...two more people behind the counter had to say, "wow, he must be having a day, wish I could just lay down whenever I wanted" (and then rolled their eyes). Yah, well you know what scout master behind the counter...he happens to love lying on the floor, he does it a lot, he likes the firmness and pressure of the floor, it makes him feel stable, oh yah, and did I tell you he has autism, and that you should just be thankful he isn't running all over this store touching everything, knocking it on the floor and screaming at your customers. (Okay...I didn't say that, but I wanted to.) Outa there! I DON'T CARE WHAT THE WORLD THINKS of our beautiful boy.

And yes, oh my goodness, I had to get one more stop in before we went to speech therapy. Brent is leaving out of town again, and needed his new pants he got a week ago that were getting altered, picked up from Macy's at our mall. Every time we walk into that store (which used to be Marshall Fields, which used to be Dayton's all just in the last 5 year), it is sensory overload for Sam. I was trying to prepare him and myself for it all the way there. But NO..................as soon as we walk in the doors, it hits..........what?..............I don't really know, other than I think it is a combination of the lighting and the mens fragerance counter to name a couple of things. Sam had an instant "drop to the floor, screaming" explosion. I had to get Brent's pants and go. Eyes were glaring at me all the way down each isle, like they were asking me what I was doing keeping him here. But...I had to get Brents pants before he leaves....and this mall is not a quick drive from our house, to try and return, before he goes. I DON'T CARE WHAT THE WORLD THINKS of our beautiful boy.

We get in the car, he starts to calm himself, as he wouldn't let me near him. We try to talk to grandma, and then it is off to speech. While he participated well during his session today, he was straight out the door when we were done, yelling in the reception area as I talked to our therapist, "doooooo, dooooooooo" (go, go).

As the afternoon progressed, and Sam had found other spots around the home to lay on the hard floor in a ball (a way he comforts himself), he started to come back out of his shell. I let him "chill" on the rug he chose by the garage door, and went up to the office to work on the computer. It was there in that chair, that I received the best proposal of my life. Sam had found some flowers in a vase. He brought them up to where I was working, and with the biggest smile, while he stood in front of me holding a few flowers, he said, "marry?". Ohhhhhhhh, THE BEST PROPOSAL IN THE WORLD!!!!! I DO, SAM!!!! I promise to be your loving mom the rest of your life!!!!!!

A Breath of Fresh Air (Journal#34)

After a month and a half of waiting, we finally were able to get in and see a behavioral therapist today. One that our insurance covers with a copay (finally)!!! She has her office at the Autism Society of Minnesota headquarters. By the way, check out this adorable picture of Sam on the advocacy page of our state's website, click here! Okay, enough bragging, although I am sad, because he is already well over a year older since that picture was taken. They grow up way too fast!!

Brent actually flew in early this m0rning (he was out of state for work, we do live together:) to make the meeting. I was so glad he could be there. Given his crazy travel and work schedule, he has not missed a meeting. We asked a lot of questions about our concerns with his need for whole body stim, safety issues, communication issues, his agressive behavior when having a melt down that is leading to more dangerous situations for him and others, just lots of things.

She gave us sooooooooooo many things to work on, and Brent and I are excited to begin. It is going to involve a lot of work, redoing some of our picture schedules, creating more "therapy spots" in the home, lots of time, but mostly lots of love, which we have.

One of the things she shared with us, which I will share with my autism friends is a concept that was new to us when using Social Stories. Instead of verbalizing the written story(and doing pictures), she suggested video taping Sam doing the things we are needing to work on. For example, taping him walking safely across the street, or taping him coming to talk to us before "escaping", I mean him wanting to go out to play :). She told us she has been involved with recent studies looking more at the thing that frustrates us most about Sam. And that is he can tell us exactly what he needs to do in situations after only being told once, but he can't apply it for himself. This has been most frustrating for us, but she explained some of the research showing the brain connections with autistic children,and that they can understand and even apply to other people these procedures, but the part of the brain that allows them to see themselves doing the task doesn't always connect, even with a picture of themselves. For them to physically see themselves moving through the actions on video is finding some success with other familes who have tried it. So, we are excited about taking our social stories to a new level of "animation"!!!

She also suggested we follow through with applying for county assistance for developmental disabilities, as she thought we could use more help in the home, and could get him more services. I have put off filling out the the 200 page application (it just seems that long) because we couldn't afford the TEFRA copay, and because the "waiver" waiting list has been closed for two years with no opening date in sight. So, I am now motivated to do that again, and at least get a case worker assigned to Sam as she suggested. I am sharpening pencils as we speak (oh wait, it says use blue ink only).

The last thing she encouraged, was for us to finally look at RDI. I have been poo pooing it this past year. Trying to just read up on it, but again, thought it looked expensive, considering our stupid insurance. But, I know some of you out there have had success with it, and others also by just going to conferences and self educating, instead of paying providers and consultants. I would love feedback on how RDI has helped any of you, and suggestions on going full boar, or just taking peices that work, or whatever suggestions you have. THANKS!!!

It is nice to talk with someone, and the new behavioral therapist gave us that little motivation to get back at it, and she also gave us a breath of fresh air.

The Boys of Summer (Journal #29)

My boys got a great chance to enjoy "the real boys of summer", the Minnesota Twins. We had a great time today. We were invited by some good friends of ours who have tickets to go for an evening with both families together. As we left for the game, dad/Brent became ill, so saddly we took him back home. I was to meet our friends in our seats at the metrodome. While sad that Brent couldn't join us, we still ventured on.

I was a little nervous, knowing that we were going to save money and park in Brent's work parking ramp downtown Minneapolis. It is only a few blocks from the metrodome. I had already decided that I was going to use Sam's harness, knowing that I would have both boys and need to carry food in the shoulder to shoulder crowd once inside.

I think I have shared previously how Sam darts away quite quickly, which is a huge safety concern and constant fear of mine. Last year I found this adorable harness that is more discreet and has a cute backpack attached that you can store the monkey tail/harness in when not using.

As we parked in the ramp and got out, I went to the back of the van where we keep it.

I was putting it on Sam, when Zach said, "Mom, Sam is too big for that, it is for babies, he is four."

I replied to Zach, "No, it really is a help for Sam it keeps..."

"I know, I know", Zach quickly interrupted, "it keeps him safe, I forgot, he doesn't get that car thing, like that they can run OVER YOU. Mom, he doesn't get it does he?"

While that wasn't my most imminent fear, it was really being in a packed metrodome, knowing he could run quick and get lost, it was just easier to leave it at Zach's comment, as that too is our usual concern.

My "boys of summer" were great on the few block trek to the dome. We got there with no problems. Zach was so sweet the whole way there looking out for Sam with sincere concern.

When we got to our gate, we still had to trek around the outside of the dome on a ramp to get to our door. It was really hot, and Sam just would stop and lay flat on the ground wherever he wanted, with hundreds of people directly walking behind us. Zach started to get annoyed with Sam's constant dropping, and was getting hot himself. The little stops to rest were hard to predict and were pretty dramatic. If I tried to pick Sam up to carry him in, he would scream and do the "dead man's weight" routine. We ended up merging our way to the outside of the crowd to let Sam lay on the edge of the walkway. He does this a lot, no matter where we are. If he decides he is too tired for whatever trek we are on, he just lays flat on the ground. He doesn't care if it is dirt, grass, cement, or rocks. He just plops.

Zach was completely patient during this whole ordeal, and after 10 minutes, we were able to convince Sam that he had enough strength to make it into the dome. Once inside, we got our food (while Sam continued to just sit on the floor as we waited in the food line) and proceeded to climb to our seats. We made it in one piece!

Throughout the whole game the boys were INCREDIBLE, and I really mean it. Our friends were delighted at the behavior as well. We drove two cars thinking that my friend and Sam and I would need to make an early exit, but he did great. Zach was thrilled and rooted on Tory Hunter, a fav of his. Sam just took it all in sitting next to his R. R is our only trusted sitter, of whom whose parents we enoyed this outing with. R and Sam are great together. She really understands Sam and everything about him. I don't know what we are going to do next year when she decides to leave us for Boston University, ughhhh!!!!!!!! She has been an amazing source of support when Brent and I just need a couple hours away. I guess we may just need to move! Anyway, the moral of this story so far, is that they were awesome.

Awesome until the "potty break" that is. Brents sister K had called to tell us they were up from Iowa just for one day. K is a high school softball coach, and they were up for a coaches retreat and some workshops, and were enjoying a game at the Twins before heading back to Iowa. Since we were both there with other parties, we just decided to meet on the concourse outside briefly to say hi.

Here is where my "overstimulation/deep pressure" issue comes in....

Sam was super excited when I told him we were going to be seeing Aunt K. I had told him well in advance as well as minutes before. But...Zach was super excited too, and he was thinking Uncle J would come up with Aunt K, because he wanted to show him he was wearing the Twins Jersey they gave him a couple years back. So, when he didn't see Uncle J with her, Zach was all excited wanting to get the message to K, and meanwhile Sam started in with "overstimulation", trying again to burry his head into his brother, taking his legs to kick and push into his brother. Of course Zach responds back with the same actions, only he is over twice his size and more obvious, sooooooooooo, while Sam is rubbing his body all into Zach while I am trying to touch base with K, Zach's reactions are of course what I notice most and call him on it as well. DANG!!!!! I hate when I know I am doing the same blame game on Zach, when Sam initiates it. I saw it, it is less obvious, and easier to stop the largest commotion at the time, which is always poor Zach.

This leads me to our next step in therapy with Sam, of which I will take advice on (since we are still pending insurance approval for this new Autism Behavioral Therapist).

We know Sam seeks deep pressure.

We know he loves to seek it from his brother, who loves to wrestle back and give him what he needs in return.

We know Sam gets overstimulated easy, and when his brother is around, he seeks pushing his body into him for that relief that he usually can get at home.

We have tried weighted blankets, but Sam doesn't like them as we can tell he likes movement with them.

I try to grab him, when I see him shoving himself into his brother and wanting his brother (74 lbs.) to lay on him (37 lbs.). But, I can't always be everywhere in our home at all times. When I get Sam, I then wrap him in a blanket, apply what pressure he wants and rock him. This is what he prefers, if he can't wrestle with his brother.

The deep pressure seeking is one of the issues we still struggle with but need to get help other than our private OT, and pending our behavioral therapist.

Anywho, they appeared super "wild and goofy" the whole time I am trying to talk to K. After we got done talking, I took Sam aside, gave him a huge bear hug for awhile (which he does like for pressure as well). This seemed to finally calm him. We hung out for a few minutes longer while I then rubbed Sam's back to also calm him down before heading back up to our seats. The rest of the game was just as it was before...fun, enjoyable, and exciting, watching my little boys sit and watch...the real "boys of summer".

Any ideas on how to discourage Sam using his brother for deep pressure, so we can focus their relationship on other things, like communicating and friendship and companionship? Let me know.

Otherwise, until we get in to our new Autism expert, we will just keep on enjoying our "boys of summer"!!!

It's been a "Dandy" ole time! (Journal #21)

"Dandy"lion time that is! Sam's eyes are always looking. He is constantly going, constantly seeking the details in his world. We enjoy watching and waiting to see what is next.

When I speak in terms of next, I mean, what will his next fixation be? What will be the thing that sticks in his mind obsessively the next couple of months? I remember all too well all of the diagnostic tools and assessment questions when Sam was being evaluated. I remember the questions about odd play or lining up toys, or overly obsessing over an object. I knew what those questions were looking for in terms of answers, but I didn't want to give it to them in a way. For Brent and I knew that what we would say, would further lead to the diagnosis which I, personally, had always feared. I curtailed my answers somewhat, and I actually remember not telling the full truth on his educational assessment because I did not want him to have Autism. I wonder how many criteria he would have met if I had been totally honest.

But here, this is why I did not want to tell the whole truth...I felt like some of those questions made him seem like he was completely thoughtless. That lining up toys in bizarre fashion had no meaning. That doing the same thing over and over again was absurd. But it was the opposite for me in my understanding of Sam. I always felt, and continue to feel, that he always has a purpose or an outcome that he wants when he fixates on something.

If it is lining up objects, there always appeared to be a reason. You could just look at his little face thinking so hard and know he had a purpose. His little eyes squinting. Crawling on his hands and knees to get floor level for a better look at what he had done. Laying on his tummy, holding his head up with his hands, staring endlessly at what he had just created. He was proud! Not thoughtless. He was thinking about what more he could add on to it. Not thoughtless. Above picture shows how he took all of his books and my potted plants and lined them all around the perimeter of the patio one day last May. The picture below is him ,over a year ago, creating inside.

For Brent and I, the most amazing thing is his memory of what he has created. We call them "shrines". Sometimes we have to leave them for days. He screams with great pain if anyone even touches his creations. Poor Zach can't come within feet without a shriek from Sam. Zach is seriously, the most patient and loving brother in the world.

Perhaps what is most intriguing about these creations, is that they contain many objects, toys, and "latest fixations". Many times there are too many objects to count. If he is out of the room, and you move an object an inch, and one that isn't even real visual, he will notice immediately. He memorizes every position and angle that he has arranged everything. He has a purpose. Sometimes Brent and I think he is creating some type of map or layout. We think he will be a famous architect some day.

In his "shrines" or lines, or whatever they are...they always look like they have a purpose in his mind. The challenge is the "fixation" of the day, month, week, or year. What is the object or idea that he will incorporate into everything he does? Well...for the last 2 weeks and still holding strong...it is the dandelion. Walking anywhere near those lovely weeds is virtually impossible, as Sam believes he needs to snatch every single one up and bring it home.

This has been his latest ritual:

1- pick dandelions all day when outside or at brother's soccer practices

2-place them in a ziploc baggie as soon as I can

3-carry baggy with me everywhere...school...church...bedtime...mealtime

4-put them on the floor in toyroom and create a "shrine" of lines for them

5-when they look dead... cry, scream, yell and throw them out of the baggie (along with all the grass I have collected) on the floor, scattered as much as possible

6-repeat steps 1-5

We just love his little mind so much. While sometimes it is frustrating when we don't understand, we always know he has a purpose for everything he does. This weeks issue of Time helps us to reaffirm what's in his beautiful brain...

...of why he has his little stims

...of why his routines and rituals are important for him to feel safe

...of why he says or doesn't say things

...of why the way an autistics brain works is so amazing

...of why we are going down the path of acceptance that we have chosen

...it is all to honor this "dandy" little boy!

"I'm not naughty, I'm Autistic" (Journal #11)

While we will never make excuses for our parenting of Sam, it is true that a lot of his behavior looks naughty when he is having a hard day....when he is having what Brent and I call "An Autistic Day".

I am frequently reminded of what it looks like on many outings to the store, when I get those "glares":
- because he is tantruming because I won't let him walk, because he is a runner (runner awayer that is)
-because he is screaming and clawing my face because I won't stop the shopping cart so he can sit in the middle of an aisle and play with the carts wheels like he likes to do sometimes (forever, and I don't always have forever, although I could live at Target).
-because he is talking extremely loud saying the same sentence over and over again until he gets the response he wants from me.

Glares, yep, get them a lot. People are just rude. I get tired of them looking at me, like I can't control my child, or I have spoiled him and he always needs his own way.

We actually have a business card we have ready to give out at all times from the Autism Society of America. It reads simply this:

My child has a neurological disorder called Autism. He is not being naughty and we are not being bad parents for not reprimanding him. Children with Autism can often behave in an unpredictable manner because they find it hard to cope with many everyday situations. He is quite simply doing his best. Please be patient.
For more information about Autism please visit: www.autism-society.org

We are thankful we don't get those "glares" from family. They have been wonderful, supportive and so understanding. After coming off of family time at Thanksgiving, we really only had one big "melt down" as we call them. He appeared very "naughty" at the end. When Sam does things that appear to be intentional, like destroying his brother and cousins puzzles, it is that... intentional. However, what makes it different, is that it is intentional for reasons we don't know or always understand. For example, we do know that with Sam's SID (Sensory Integration Dysfunction, typical with Autism), that he likes to scream, he likes to be tackled by his brother, he likes the deep pressure. Therefore, many times he does mean things to his brother so he can scream...so his brother will tackle him out of anger. But, when it is interrupted by Brent or I picking up Sam (the only way to get him out of that behavior is to remove him from or redirect him from the situation), it takes his "plan, ritual, routine" that he wants to have happen and ruin it in his eyes. He will scream, hit, kick or whatever until he is tired. It does no good to talk to him when he is this angry, or to put him in time out. They don't understand time out.

What does work, is letting him have his melt down. Then, at a later date and time, creating a "social story" around what happened. Below is a web site that explains and gives good examples of what they are.
http://www.autism.org/stories.html
The only thing at this age is that social stories should be presented a little different. It is important to have the child be a part of you creating it and making pictures for the story, not just the words you read. (Thanks Lee Ann and Jenny for this advice and input).

Stacy, thank you so much for the compassion and love you showed when Sam had his "little outburst" at Thanksgiving. You asked exactly the right questions, which is what Brent and I are very open to, and want you all to do. Not only did you display true love and care, but you clearly asked what would be best in that situation if it happens again, and if everyone should leave the room. For that situation, it was just a matter of Brent removing him and restraining him until he was calm (sorry Kelly for Alexis getting knocked down by Brent coming through, but she would have gotten hurt worse by Sam throwing something again if he didn't take him right away), and a social story followed the next day at a time when he was very calm, and was also repeated. And Stacy, you were also very correct in that it is best if just one of us deal with him and give the directions, as the more people yelling, telling him what not to do or do, the more confusing it is for him. Also, if we yell or raise our voice, he does the same thing but it escalates even more.

Some things that we don't want family to always worry about or feel like you need to intervene (unless we are getting hurt), is that when he can't use his words correctly to make his request or point and he gets angry. For example, during Thanksgiving, there was a point that Sam was not getting understood and chose to hit me several times (just my legs). I was choosing to ignore him..... a) because it didn't hurt b) he is a little different than other kids in that if I were to have responded with "we don't hit", he will not care because he just has in his mind what he wants. If I respond to him hitting me, he is getting the attention from me that he wants so I will figure out what he is saying. He then uses me to communicate instead of himself. So, sometimes it is "wait time" and holding out that we are doing to see if he can figure it out. That is what we have always done, which we have been told, has probably helped in the great language he already has. So, when Brent and I are right there, witnessing the behavior, if we are not addressing it, there is a reason from experience that we aren't. The incident where he was hitting me, involved someone else telling him to stop, which in turn, solicited a response from Sam that was him screaming "no". He wanted me to talk to him (in his head). I wasn't responding, the other adult was, so he wasn't going to stop. He then started hitting more because he was mad. That same situation happens to me on a daily basis. When I tell him to stop, or to use friendly hands, 99% of the time it escalates. When I ignore it, it stops much more quickly and then he is calm and I can encourage him to use his words.

Below is an excerpt from another parent of an Autistic child who wrote a publication called "Living with Autism":

Over the years I have come to realize that most people do not know what autism is, yet they know what Down Syndrome is. Maybe this is because autistic children 'look' like everyone else. The thing is they aren't like everyone else. This is one of the things that makes bringing up an autistic child so hard: the lack of understanding, by others, of their condition.

'Research has found that parents and families of a child with Autism are under greater stress than those with Down Syndrome or who are physically or mentally handicapped.'

-Autism News, Sept 2002.

Quite often an autistic child, in the eyes of an uninformed person, would be seen as naughty and out of control. The fact is these children don't know how to be 'naughty.' They cannot use their brain to manipulate a plan to misbehave. What they are seeing is a child who has a complete fear of the world. They don't understand the world as we would. They don't understand that if they cross the road without looking they could be run over.

Autistic children have to be taught EVERYTHING. Nothing comes naturally to an autistic child. 'It is important that everyone - parents, extended family, teachers and friends - understand that children and adults with autism are not like average people. The do not think in the same way and they should not be 'treated' like everyone else.' -Dr. Richard Eisenmajer (psychologist)

So.........even though Sam will look naughty sometimes or many times, how we will handle it may be a little different than when Zach or others are naughty. If Sam does something mean to one of his cousins, please remember that if we don't consequence him in front of you or in a way that you felt was properly compensated, please don't think that we didn't care or didn't think it deserved a consequence. Just know that we feel just as bad about what he did, but what we do with Sam may reflect it a little differently.

While I would never put one of these pins on Sam, people actually make these for parents because of the way their child looks and behaves in public:

I think Brent and I will stick with the cards. We love you all and thank you so much for being understanding, for not being afraid to ask us questions, for not acting like he isn't Autistic, he is, and he will have to be treated differently, and you have exemplified that.....................and for not being judgmental. We love you all.

The door....and Autism 101 (Journal #9)

Sam forever enjoys kicking his bedroom door when it is closed sometimes. We are just waiting for it to break down. When he kicks, he lays on the floor vertical to it and just kicks forever. We have since, started to learn more about that and many other things he does.

Our school district encourages all parents of Autistic children to attend classes every Monday night for half a school year. They call the classes "Autism 101". They are really great classes. It is giving Brent and I a chance to connect with a few other families. The district has 22,000 students in it, and there are over 100 students with Autism.

So far the experience has been wonderful. Of course, Brent is the star student, always asking those questions no one knows how to ask, and of course offering up some theories that make the speakers agree. He is such a suck up. :) I love that so much. He just cracks me up. The neat thing about all of this, is that we are both acting as students in this whole process. Wanting to learn and be educated as much as possible.

The last sessions have been on behavior and discipline. Sometimes we have a hard time knowing how to discipline and what to do if we need to punish Sam. He is so happy and bubbly sometimes, that he puts on that smile after doing something naughty. Or he often laughs when and while he is doing something. What is crucial for us to remember (even if it is making us mad that he is laughing, etc..) is that he can not process or filter even the right emotion too. He may be very angry while he is hitting, kicking or running away, but it may be presented as laughter. In the past we would discipline him by putting in time out (which he never sits or stays). It is so different than Zachary. Even though Zachary too, is very strong willed. We have since learned from the psychologists and specialist that work with us, that time out is not appropriate for Sam (will explain later).

Here are the things we have learned so far at "Autism 101". We have learned that discipline is very different for Autistic children. They don't understand consequences. That really helps us understand a lot of our frustrations with Sam up to this point. They may be able to look like they understand, they may be able to repeat what you tell them, but with Sam the behaviors continue to return. Consequences are a huge no with him, we are told.

So what do you do? With the hope of not boring, but helping to understand Sam, here are the things to do when disciplining...

Determine what behaviors are a problem, and only address those behaviors with Autistic children. Behaviors must fall into one of the categories below:
1. Is it dangerous to self or others?
2. Is it causing property damage?
3. Does it interfere with learning (self or others)?
4. Is it annoying or disruptive?
If it is not effecting any of those categories, then don't address it.

T-E-A-S-E: An acronym to remember why these behaviors occur with Autistic children.
T- is for Tangibles. To get food, obtain activities, get toys, or protect personal space.
E- is for Escape/Avoidance. Difficult tasks (bath time, hair cuts, picking up toys), Change in routine, Interruption in a desired activity, avoid hugs, affection, or attention.
A- is for Attention. Obtain hugs, Parent Attention, Interactions from others.
S- is for Sensory (Self reinforcement or stimulation). Obtain sensory input, rocking, head banging, hand flapping, spinning somersaults, finger flicking, leg banging.
E- End of reasons. Meaning, once you find out the reason or function of the behavior, it can bring an end to it, or an end to your concern for it.

10 Strategies to Respond to Challenging Behavior with Autistic children.
1. Communicative Replacement - A strategy that teaches a communicative response in place of a problem behavior. An attempt must be made to make the problem less effective in achieving the desired outcome (toy, activity, etc.). The first component is achieved with communication training and the second is achieved by not allowing the misbehavior to have an effect on the environment or demand. These two components must be applied simultaneously to be successful. (In lay terms: simply by showing what the child should do in that situation, role play, act out.)
2. Structuring the environment - Set up and organize the home. Boundaries help establish expectations for the environment. Assign seats in the car, at the dinner table, in front of the TV.
3. Visual Schedule - Use of objects, pictures, written words to inform a child of activities that will occur. Examples- trip to dentist, bath time, starting a new school or routine.
4. Collaboration - The reponsibilities of a task are divided between parent and child. When using collaboration, the parent shares responsibility for task completion with the child. The purpose of collaboration is to increase the probability of task completions and permit earlier completion while delivering (positive) attentions during engagement.
5. Tolerance for Delay - A strategy that helps children maintain participation in an undesirable activity for increasing lengths of time or waiting for a desirable activity for increasing lengths of time. Example- Eat two more bites, then you can go outside. Keep cleaning, put two more toys away then you can watch TV.
6. Prespecified Reinforcer (nice word for bribery, it's OKAY to do with Autistic kids!!!) -A strategy in which the child is told or shown what reinforcer will be received when task is completed. The exact work requirement is specified as well as the exact reinforcer to follow. Use statements like: "If_______, then______." or "First______, then_____."
7. Preferred Item as a Distracter -A strategy presenting a highly desired item (toy, food, activity) to a child during a difficult or disliked activity before challenging behavior occurs. The preferred item is intended to distract the child from conditions that provoke challenging behaviors.
8. Warning before a Transition (3 step warning) -Before a child is expected to end and activity and transition to another, the child is given several visual and/or verbal warnings.
9. Choice Making -A child is given a choice of 2 options. A child can make choices between desired alternatives as well as less desired alternatives (pick up blue blocks or red blocks). Choice making offers control that they need for security.
10. Desensitization -A strategy used to lessen or diminish sensitivity to situations or sensory input that are difficult for a child. It is making sure a child has gradual exposure to a situation. Desensitization can be used when a child's behavior is to escape or avoid a particular activity or when a child obsesses on an activity or item.

Simple Guidelines to Follow.
1. Try to determine the function of the behavior.
2. Look at what is reinforcing the behavior.
3. Pick a strategy that addresses the purpose of the behavior.
4. Teach a Communicative Replacement. Almost always the best idea!
5. Sensory behaviors are the hardest behaviors to address.

Avoid Yelling or Confrontation
Why? Children with Autism have a hard time understanding nonverbal-communication such as: eye gaze, facial expressions, voice tone, gestures.

Stop Talking when things get bad
Why? Because children with Autism do not understand spoken language very well. Adults tend to increase their talking when behaviors escalate.
Being silent gives the student a better chance to focus, calm down, and decrease the probability of someone getting hurt.

Distract and Redirect
Children with Autism do not understand cause and effect. Distracting a child from engaging in a negative behavior and then redirecting to a more appropriate behavior (with physical and verbal cures) is more constructive. Once the child is engaged in a positive behavior, praise them. Threatening or giving negative consequences have little meaning or purpose to them.

Back to the door..............while it is annoying and can cause property damage (on the behavior check list), we have been able to determine that it is a sensory need for Sam. He loves the sound, he feels good from the pressure and rhythm.

(These are all notes from Brent and I taken from our districts Autism Team.)

From our resources at Fraser, a wonderful place that our doctors and others call the goldmine of Autism in the midwest, we have also been educated on time out with Sam.

They told us that Sam will not understand Time Out like most children. That for us to use time outs, should be to help Zach. We will have to discipline the two of them differently. However, Dr. Pederson told us, that we should occasionally (when Zach is around) use Time Out to show Zach we are giving him consequences for his behavior, even though Sam will not understand it the same. That is going to be one of our biggest challenges, parenting them, disciplining them, which will have differences. What won't be different is how much we love them both!