Normal People Scare Me Too!!! (Journal #65)

I looked up the word "normal" on good ole' Webster today. It defined it as follows:

of, relating to, or characterized by average intelligence or development b : free from mental disorder : SANE

So I further investigated by looking up "sane", and found it defined as:

1 : proceeding from a sound mind : RATIONAL
2 : mentally sound; especially : able to anticipate and appraise the effect of one's actions
3 : healthy in body

So I thought I would look up "rational":

1 a : having reason or understanding b : relating to, based on, or agreeable to reason : REASONABLE rational explanation> <rational behavior>

Must I continue? Because as I continued trying to define normal, I thought, who is normal all the time anyway? There are many days that I, myself, am not "free of mental disorder", and I know darn well there are people around me whom I would agree are not normal all the time, or as those of us in the autism community would prefer....typical.

I say this because, on Saturday, my oldest neurotypical son and I, enjoyed a wonderful event. An event in which we were able to view a movie I heard about awhile back. "Normal People Scare Me" is a film about autism, and created and documented by Taylor Cross, a brilliant 18 year old with autism. Taylor invited more than 65 individuals with autism or Asperger's Syndrome to describe their experiences on the film. Keri, his mother, helped him on the project that was produced by Joey Travolta, John Travolta's brother. Ironically, John Travolta has a 14 year old son, whom many believe is autistic, but because of their Scientology practice, are not allowed to call or treat it as such.

I am thankful for the efforts of our local Minneapolis group called Autism InfoGroup and Partner's in Excellence, and in collaboration with the Twin Cities ARC, who sought funding through local sponsors to make this event free. Keri and Taylor have been touring the United States and world this last year, and we were one of the first places to provide this free for families.

The day included break out sessions in the afternoon that allowed moms, dads and siblings to meet seperately and share their experiences with Taylor and his mother, who made the film, as well as Taylor's little brother, who is 11. Zach loved the experience of meeting someone else in the same situation as him. They became friends for the day, and even got to talk a little Nintendo DS chat. Zach thought it was "cool" meeting someone in a movie! Keri Bowers has dedicated her life to bringing awareness and acceptance into the community. She speaks volumes about getting our children ready through social and life skills training and has started camps in California for individuals with Autism to do so. She was very inspiring to me, and reassured me that Brent and I were doing things similar with Sam. She doesn't believe in sitting back with our kiddos with autism and letting the providers take care of the therapies that our kids do daily.

Keri has coined a term called "missions". That you create "missions" for our kids NO MATTER what level of the spectrum. They are going to be capable of doing whatever we believe. If we believe they can't handle certain situations in public or in life, and don't ever begin teaching them these things, then of course they never will conquer it. Even outings to the store need to be taught and practiced, and as Keri said, "do it 1,000's of times till they get it". Our kids need that to survive in society.

So a simple "mission" example is this....if your goal for your child is the best independence they can have in their adult life (which is ours), then you have to start "mission outings" NOW! Keri said that even for 3 year olds it is not too early, you just modify your short term goal. So, for us the last two years, we make daily outings into public with Sam. He has to learn to be able to go to a store as an adult, right? I think back to even a year ago. I dreaded Target with him. The flourescent lights, the sounds, and the smells were sometimes too much. But if you keep introducing them to the environment, they will eventually learn to cope. Yes, last week he still collapsed in middle of an aisle there, curling up in a little fetus position and wouldn't move because it was too much...but that is progress. I enjoy going to the store with him now. I am no longer afraid of what might happen. I love that he is going to point to every light that is burned out. I love that he is going to give them "free service as a stock person" as he lines up products that have fallen, or that are out of order when we walk by. I love all of that, and I can tell you that I would have NEVER said that a year ago. Our next "missions" with Sam at the store will be to make a list of some things that we need that relate to him (like shampoo or something). Give him his list. He has to look for it. Put it in the cart. Give it to the clerk and pay for it (with our money of course). Carry the bag out. Bring the shampoo in the house and put it in the shower. Sounds simple, but our kids need more of this, so that someday...they will do it on their own hopefully.

Below is a 10 minute clip from Taylor and his film. The full length is 90 minutes. This is an excellent resource to share with family and friends, who really don't understand what it is like for an autistic person. All of the interviews are with people on the spectrum, except for Joey Travolta, a therapist and some teachers and parents. This is also an excellent tool to use with your children's school and to offer to present as an inservice. Enjoy!



A Twist of Faith
After seeing the movie, I can see how normal people would scare me too! I scare myself sometimes too! :) God made us all so unique and special, and if he wouldn't have, we could never be the body of Christ He wanted us to be!
1 Corinthians 12:12-14 describe it like this: "The body is a unit, though it is made up of many parts; and though all its parts are many, they form one body. So it is with Christ. For we were all baptized by one Spirit into one body - whether Jews or Greeks, slave or free - and we were all given the one Spirit to drink. Now the body is not made up of one part but of many." This means each Christian is an equal part of the body of Christ!

Rated S.O. (Journal # 61)

As I have stated in earlier posts, we have learned to do a lot of things in our family in pairs. Zach and Brent do an activity while Sam and I do another activity. This, mostly because we want to respect Sam's needs and how he will handle certain situations. We have learned that there are some things that we won't try to do as a family because it would be too much for him and one of us would end up leaving with him.

However...family time is so important for us, that we have forced Sam to like a couple areas that the rest of us love, for the sake of doing it as a family. One thing we do "as family" is make sure we hit every family feature film as soon as it comes out. Sam has learned how to handle the previews. He covers his ears and then has me put my hands over his for extra support. The next time you go to the movies, check it out...the previews really are louder than the movie.

This past weekend we hit the theatres, with me convincing the men in my family that "The Last Mimzy" was a better choice than "TMNT (Teenage Mutant Ninja Turtles)". Uggg, being the mother of boys. Well my charm won all three of my boys over, and I got my way (or did I?).

This is a warning to all parents of autistic little ones. "The Last Mimzy" is not autism friendly. Sam and I had to leave a little before halfway through. For our little ones that deal with a lot of sensory issues, this movie has them. There are lots of flashing lights, blue and white to be specific. Along with the flashing lights of Mimzy's gear comes a high pitched hum whenever the Mimzy stuff communicates (which is a lot). It was just too much for Sam. So, instead of just rating this movie PG, it should also be rated S.O. for sensory overload!

On a side note. I didn't want to leave. I had loved the movie up to that point, and it also received high reviews from Zach and Brent, so on a personal note, I would still recommend this movie (just not for our little ones who already have sensory issues).

A Twist of Faith
Sometimes we learn through trial and error. I don't believe that it is error in having Sam learn to enjoy the things we like as a family at times, as he is part of our family. God created us to be together as a family. Just as we are learning about his world, he too is always learning about ours. What was an error was us not really checking out the reviews for that type of setting.

Let us consider how to provoke one another to love and good deeds, not neglecting to meet together, as is the habit of some, but encouraging one another, and all the more as you see the Day approaching.

-Hebrews 10:24-25 (NRSV)

Plan B...(Journal #50)

Sensory needs and issues are big with our little ones with Autism. Things that would barely bother us can be extremely distracting, soothing, hurtful, or helpful to children with Autism. While we didn't understand Sam's sensory issues early in life, we quickly learned more and understood them after finally getting the Autism diagnosis.

So, to include Sam in everything we do, means we always need to have a "plan B". We are not being mean by taking Sam to most everything with us, even if we know he will not be able to stay or attend the event. We are simply trying to help him experience all of life that he feels comfortable doing.

Until about 6 months ago, Sam hated indoor playgrounds like the McDonald's Playplace, or for us, our hometown Maple Maze as I wrote about in a previous post. If I would not have made him go once a week for the last year, to expose him, and to encourage him a step closer each time, we would never be able to see the smile and excitement that he now has for playing at them. And, for children with Autism, exactly what they need, the opportunity for casual interactions with peers. As my friend at Autism-schmatism has shared, you keep trying.

Our intentions were good. We still wanted to include Sam, as the one thing we are still determined to do, is be family. To do everything we can together, but just in a different way sometimes.
So we tried....
Plan A- We loaded up the car to go downtown before Christmas Eve. It was the last night of the Holidazzle Parade. We had not been to it for almost 4 years, and Sam had never gone. We thought we would make a night of it. We would first go to the Macy's display, where they have an animated holiday display every year on the 8th floor of the downtown Minneapolis Macy's store. As we trekked all the way up to the 8th floor, we soon found out the line was an hour and a half wait. Sam was already twirling and pulling away, wanting to run. Plan B is now implemented. We would go back down to skywalk level, eat supper at dad's favorite, Potbelly's, then go and find a good curb spot for the last night of the parade.

Should have known that things would need to switch to a Plan C while eating, or not eating in Sam's case. Lot's of people busy getting last minute gifts. Potbelly's is all glass, facing into the IDS Tower, the tallest building in Minneapolis and a center for activity, especially before the parade. Brent and Zach sat at a differnt table than us, as Sam was angry and had ran and head butted Zach in the back for no reason. Zach was hurt so bad he was crying. I took Sam to eat at a table where he could not see Zach, as poor Zach was his target, and Sam just wanted to kick and scream at him.

Sam was back to no words, just growling and screaming. He pushed away (onto the floor), each food I tried to give him. He finally ate two pretzals, and drank two sips of pop and done. Plan C started. I told Brent to have him and Zach to finish and then meet us on the plaza level, as I would walk with Sam and let him watch the water and people. We walked and walked.

Brent and Zach joined us. Sam seemed to be smiling and was excited about going out to the street to prepare for the parade. We made our way down a few blocks to finally find a curb spot. It wasn't too cold for a Minnesota evening. We thought we had settled in for our short wait. Sam continued to have a hard time staying still, and the crowds were starting to thicken along the route, making it even harder for the little guy. Plan D- Brent took Sam for a walk until it started.

As the parade got closer, Zach was full of excitement. He had started to remember a little what it was like. It is similar to the "Electro/Lights" parade at the Magic Kindgom. Every person and float is solid lights in the parade. As the parade got closer, Sam got more uncomfortable. After the first float, full of lights and music came by, Sam was done. The sounds, the lights, the thousands of people were too much for our little guy.

Plan E- I take Sam back through the skywalks to the parking garage until it was over. The walk back included two scenes of him just stopping and deciding to lay flat on his back. He is not screaming or tantruming when he does this, he just lays there and looks straight up. He does this every once in awhile when we are out. I have gotten so used to it, that I just kneel beside him and talk to him until he gives me that look like he is ready to go. To others it can look like he is having a tantrum or is hurt. It is always interesting to watch how people react. React, but not respond.

Plan F is for Brent and I. It is our plan, that even though these outings can be exhausting for us, and it doesn't always go as planned, that our final plan is that we will continue to keep Sam a part of our world, while respecting his.

We will continue
~ to do things as a family whenever possible
~to never be dissapointed with Sam, but maybe dissapointed with ourselves if the plan wasn't well thought out
~ helping Sam adjust to his world in little doses
~ to have a "plan B"

A Twist of Faith
Things in our life never go as planned. We have disappointments and celebrations. Often times these things occur when we least expect them. The one thing that is for sure, is that we can trust God to lay out His master plan for us, and that no matter how we journey down that path, He is always there, even during the "plan B's".

It was because the Lord loved you and kept the oath that he swore to your ancestors, that the Lord has brought you out with a mighty hand, and redeemed you from the house of slavery, from the hand of Pharaoh king of Egypt. Know therefore that the Lord your God is God, the faithful God who maintains covenant loyalty with those who love him and keep his commandments, to a thousand generations... ~Deuteronomy 7: 8-9 (NRSV)

Wondering why...(Journal #38)

Wondering why...I haven't been able to put to words what I have been pondering about Sam the last few weeks? Could it be because we have seen dramatic highs and challenges ( I don't want to say lows, okay, I just did didn't I?)? The highs have been awesome. His big brother had a sleep over, consisting of 8 very active 9 year olds on his brother's birthday. I was completely stressed about Sam being overstimulated by having all of the excitement. Brent was on "Sam duty" throughout the event. On the agenda for the evening was bowling at the awesome Brunswick Zone. Our last experience trying to do a family bowling night ended up with Sam screaming, running around and hiding under chairs, of which saw the two of us driving around in the van for the next hour while Zach and Brent enjoyed the rest of their game. Needless to say, to our surprise, Sam was the most manageable boy there! He was awesome, even with all the noise, even with the 48 lanes, lazer tag center, arcade, diner, and sports screens! It truly was a tearful, joyful time for Brent and I to witness. Perhaps, the greatest though, was the way Zach and his friends handled Sam. Even though we heard some of the boys saying things like "I don't understand anything Zach's brother says" or "Why does he make sounds like that?", the culminating moment was at the alley. The boys shared two lanes. Five on one lane and four on the other. Sam was a part of one of those. Every time it was Sam's turn, all the boys in his lane would get his bowling ramp, help line it up for him, help carry his ball, then they would all stand beside him to encourage him. They would cheer him and high five him no matter what he did! Sam was loving life, smiles were huge, the high was unreal!


Wondering why...Sam's back to lining all of his toys up. Felt like we had made progress seeing more interaction and play with them instead of his "arranging and lining up" and then walking away allowing no one to come near or touch. Or had we made progress, or was it just that we are hardly ever inside from June-Sept before we have to be in winter? I started really thinking about his play. Yes, we haven't really been playing inside for a long time. We've been out back in the sandbox, where Sam will play for hours if left to do so. So I got a little sad this week, when he kept creating the same scenario with his barn stuff. If I cleaned it up at night, he would wake up screaming that "you brote, you brote it!" He would then proceed to line it up exactly as it was the entire day before. No one can touch it all day! What I thought was progress wasn't. Or do we really need progress in this area? I agree that he has got to allow us to interact with him when I am tyring to lay on the floor and play, I agree that he has to learn to let people play with the toys the way we want to, not on his terms, but isn't it still okay for him to do his arranging/lining up for whatever security reason he needs? Lining up organizes his world. We have taken all toys out of his bedroom this last year, because he would just line everything along the walls of his room all night if we didn't. Even after they are lined up, he still keeps adjusting them, making the objects face directly the same way or whatever. All that remains in his room are a couple of his favorite snuggly animals, his tub of "sensory" kidney beans ($100 worth), and his weighted blanket. So, this week I caved. I allowed him to bring in a few toys at bedtime to line up along the wall. It seemed to comfort him. I put the timer on telling him how long he had, and you know what he said back to me? "I dus need to line dem mommy, den done." (I just need to line them up mommy, then I am done)! I wonder if it is okay, but I don't need to wonder if it makes him feel better, it does!

Just a couple of things I have been wondering about....of which there was so much even more I am still wondering about, and will share in later posts.

Just always thinking, I am...and wondering why?

Ufta, Saliva... (Journal #17)

Ufta, Saliva...and I am not even Norwegian. But truly, yesterday was an "ufta" day. Sam had one of the most challenging days he has had in a long time. Oh, and saliva was a big part of the day. So, if you have a weak stomach, don't read on.

The day started like any other school day, except he had a hard night sleeping, which might account for the crazy day. His meds have been working so well, I am really hoping it was just a glitch.

Transitions were a little more difficult getting clothes on and ready for school. Eating is always an issue, but I don't recall that he ate any more or less than he usually does. He definitly did not want to get on the bus. And to top it off, he had a substitute bus driver, which could have added to the day.

After he gets off the bus each day, he has his little routine. It is actually very cute to watch. It usually takes us awhile to get into the house, as he spots every new leaf, seed or rock that lands on the driveway. He always insists on picking up each one. We finally get to the front door, he rips off his coat and shoes and runs up the steps to see what I have on the table for lunch. Same routine every day. But........today, I knew we were in trouble when he got in the door, and instead of him taking off his coat, he looks at me and screams "OFF!!!". Saliva is drooling out like crazy. He is slobbering all the way down his coat, which now is as shiny as a tire rim. When his drooling is worse, it usually means something is going on. Sometimes he is sick, sometimes he is tired. We just never know. I calmly say to Sam, "Use your words. What off?" Even though I know it is his coat. "MY TOAT OFF!". I again respond with a calm voice, saying "please?". Knowing that to ask him to try to take it off first as usual, was out of the question today. "PEASE!" he yells.

So, we get done with the coat ordeal. Now he starts throwing his body and legs all over the foyer. It is obvious that he is trying to take his shoes off by standing up and not using his hands. He is screaming and throwing himself all over. I again say in a quiet voice, "Sam, mom help with shoes?" He shakes his little head yes, but he has tears in his eyes and he looks exhausted by now. I know he is a big boy and 4, but I can't help but sweep him up in my arms and carry him upstairs to the table to eat. He lays his little head on my shoulder and snuggles in for the short ride.

I always have his lunch ready, as his bus gets back from school well after 12 noon and he should be hungry (but never is). Eating has become a whole other issue, perhaps worth a blog later. We get to the table and of course he starts screaming. He is not happy with the turkey and green beans he sees. Our typical song and dance at the table has begun. I try to trick him, convince him, encourage him to at least sit down (a rarity). I tell him he has to have four bites of turkey and count them out to a single place where he can see them. He takes the meat and throws it at me and the floor (Chicago, our dog, is in heaven, and hmmmm.......no wonder she was 3 pounds heavier at her appointment this week). Sam continues to stand up on the chair screaming "ALL DONE". I tell him "sit down". "4 bites" yada yada yada.......the dance would continue forever. He finally puts a bite of turkey in his mouth (which he has liked before), but opens his mouth and lets it all fall out, chewed up and all.

Needless to say, the rest of the day was similar. Little use of his words, nor were they appropriate when he did. He would ask for water or other drinks throughout the day, but when you gave it to him, he would take a drink, open his mouth and let it fall down him to the floor, then laugh.

He spent a great part of the day running his fingers over everything and knocking everything on the floor. He has always been very tactile, needing to touch all that he sees. When he stands next to me, he always pushes into me touching my arm and feeling my hands. Wherever he goes he needs to touch and run his fingers over the object or person. Today was just one of those days that put me over the edge.

It seemed he was doing lots of sensory seeking things today. So, I even did some brushing therapy, did the old joint compressions, wrapped him tight in a blanket, and made him sit in his "bean tub" for some time (which usually calms him).

Then it came time to pick up his brother from school. I showed Sam his schedule so he could visually prepare. Gave him lots of warning. Used our cool timer (the Time Tracker by Learning Resources) so he could mentally prepare, and bam! Major melt down when it was time to pick up Zach. I can usually spare a couple minutes, but today was rainy, and I knew that faithful Zach would be in the same, unprotected by the elements spot, he usually is. While Sam is screaming, I resort to picking him up and putting him in the van while he is kicking, clawing and hitting me.

While being a stay at home mom now, after 15 years of teaching , I have finally begun to adjust. The one area I am not adjusting is the parent pick up/drop off scene. I don't really fit in. We only live 3 blocks from school. All the neighborhood parents, especially this time of year, walk together to pick up the kids. Every day I drive by, and they just look at me. I am sure they think I am stuck up or lazy. It is too hard to try to explain to them that walking with Sam is too hard. That it is much easier, no matter what his mood, to put him in the van and buckle him into his booster seat. Instead I feel like the fat, lazy loser who doesn't want to walk. Are you kidding? I love our Burley trailer/stroller, I love walking our dog Chicago with us. It just comes down to the fact that when I have to be somewhere by a certain time, that a lot of the time, no matter how I prepare Sam, it is usually a battle.

Needless to say, Zach was a saint and so patient with his brother. More so than his mother. Sam continued to refuse to use many appropriate words and screamed the rest of the day. He insisted on putting everything in his mouth, licking almost everything and spitting everywhere for no reason (it appeared, we know otherwise, in his little mind, he was trying to tell us something). Supper was chaos, bedtime was nuts, and all I have to say is....."Ufta, saliva!" Too much for me today :) Smile, there is tomorrow!!!!!!!!!!!

It Melly in here, go mom! (Journal # 7)

Since Autism is neurological, many children are impacted with huge sensory issues. Sam has many of those. He is very sensitive to the way things smell, to the texture of the clothing he decides to wear, to pain (not feeling any), to sight (doesn't like sunny places always), the list could actually go on.

One of his sensory "issues" which I find humor with, is his smelling. There are times he won't walk into a room in our house because he says it is "too melly mom". Now, it really could be too smelly, depending on the last time I cleaned that room, or the last time his brother found the dirty clothes for his socks, but, many times he smells little things I hardly notice.

Every time I make him try a new food he has not tried, he has to study it, look at it, and then he puts his nose right on it to smell it. He might be playing with toys (like new plastic ones), and he will smell it for minutes on end and sometimes end up licking it. He is so silly doing it sometimes, that it just makes me chuckle. He seriously looks like and sounds like a sniffing dog. He will be down on all fours, sniffing the toy on the ground.

Last week, we did a Kmart run together. While I always think Kmart has an automotive odor to it, :), Sam was definitely onto the smell scene. We walked by handbags first, as we were looking for a new backpack for his brother for school (go figure, the zipper broke on his old one the first day of school, that's what I get for buying cheap). When passing by some pleather purses, he grabbed my hand to stop me from continuing our Martha Stewart adventure. He didn't say anything, but as I turned around, he was hunched over a purse, sniffing the strap up one side and down the other.

Then we proceed to the automotive department (so I could check my senses and see why I think Kmart always smells like that...no really...had to get washer fluid). As I round a corner with Sam following me, I turn to see him stopped at an end cap display of Turtle Wax, with his nose virtually sniffing all over the plastic case of it. As I get ready to pipe in and tell him "let's go", it was too late. Before my mouth could utter a word, he licks it. Of course my first reaction was to yell at the poor kid. I said "Sam, what did you lick that for?", and he innocently replies "it melled". Needless to say, I won't be waxing my car anytime soon.

Yesterday we enjoyed some errands together and ended up at Target. We were cruising the health care section getting new toothpaste, but you could smell "make up" type odors. He immediately started saying "It melly in here, go mom!" I couldn't realistically go when he wanted as I couldn't find everything I needed. Of course within seconds it turned into screaming...a blood curling scream. While people always look and give that "get you child under control" stare, I have learned, or we have learned I should say, that unfortunately, nothing soothes his melt downs. They just have to run their course. Now, I didn't obviously stick around that department, but I did need to tackle other items in the store as quickly as I could and get out of there.

If there is one thing I am learning about all of this, is that how strong I have become at ignoring others. I used to always worry about what other people were thinking, but you can't anymore, I have a beautiful boy with special needs. And, I can honestly say that I don't care what they think.

As for me and my boy, if he says "it melly in here, go mom!" I am probably going to go a little faster next time!