A year ago... (Journal #18)

A year ago...we first heard someone tell us what we already suspected. "Your son has Autism." Are you sure? He just likes things a certain way. He lines up his toys instead of playing with them because he is too mature for toys and he is bored (that is what daycare thought too). He just has to have his socks put on first because........or he just flicks his middle finger and thumb together because his great Grandma Cottington used to do that. "Are you sure he isn't Asperger's though?". Hmmmmm....straight up Autism. Okay.

I wish Brent and I could have looked at things so simply. While I had suspected it since Sam was 4 months old off and on, it still slapped us on the face when we heard it from the first psychologist.

When working with the school assessment team for the educational diagnosis, the teacher in me tried to act all cool, like I knew everything. Yah, right. I was freaked. I remember crying to myself in the middle of the night. I remember Brent and I replaying everything Sam did since birth. I would question it saying, no it can't be because he can do..... and then Brent would say, yes he is, he does this and this and this. Brent and I would challenge each other, question each other, try to doubt the diagnosis, but we always came back to "we know better, quit denying it." We both knew in our hearts that he had too many of the symptoms, the lack of speech, routines and rituals that ruled our life, difficulty understanding us, tons of sensory issues, motor issues, loss of skills he had, incredible infatuations with weird objects and things, he drooled, had problems feeding himself, he seemed fearless, pain free, all to name a few. At 18 months he could count to 20. At 4 years old today, he needs help counting to ten and sometimes 12. He forgets colors and things he has known before.

We got the educational diagnosis first. When the school psychologist told us their final results, it was a beautiful spring day. I was teaching in my classroom at school when I got the call (previous contacts had eluded to autism and they had been using the word with us frequently, but it was just getting that final confirmation call....ugh). It was Brent first. He was with Sam. They had just left the last day of his testing. Brent said they confirmed the "autism" word, and that I should call the psychologist myself, to see if that is the same thing I would hear. So, during a break in between classes I called her back. It was true. Brent was hearing things right.

The rest of the day I spent at school, while Brent could not go back to work. He couldn't. He needed to be as close to his little boy as he could. He yearned to start seeing things the way Sam did in his own little world. His eyes tells us everything about him.

After hanging up the phone, I couldn't stay in the classroom in front of my students. I teach alternative education to middle school students. The most challenging students in our building and district. Many are involved in gang (wanna be) activity. While I connected with them, showed compassion and care and love for them, there was still a side of me that could never let them see me cry. Having my co-teacher and EA still in the room, I excused myself then ran to the bathroom to have a good ole cry. As I was coming out, I will never forget that God had me literally run into one of my best friends, confidant and co-worker in the building. R was who I needed to run into. She noticed my face and of course I spilled my guts within seconds. I will never forget our walk around the school building that day. At the end of our walk (when I needed to be getting myself back in that classroom acting normal), R said to me, "Laura, God couldn't have given this to two more perfect people. He knew you could handle it and make great things with it."

"I can handle it?" Yeah right. Like I try to be this great Christian or something. Who am I that would be so blessed to have this happen too? But.....it is there that I stopped any conversation with God about this in a negative light. I really did. I never once blamed God for this neither did Brent. Although I do blame myself still wondering about my pregnancy and care and exposure to the environment that I may have done. My first child was premature and now the second autistic. Maybe I just did not do prenatal care as good as I thought. I know I slipped in a couple extra Diet Cokes with Sam. Oh, who ever knows. What I do know, is that R provided for me that day, something that a mother might do. It felt warm, caring, and she is always sincere, and I will be forever grateful that she was in my pathway as a charged out of the bathroom that day.

While all this was going on with me at school. Brent had resided to take the rest of the day off and go to the park with Sam. I received pictures via our camera phones that Brent sent of Sam playing in the rocks. Brent just wanted to take him all in and love him till the ends of the earth. I have truly been blessed with an incredible man. As the school day seemed to go on forever, I couldn't wait to get home, pick up Zach from daycare and join up with Brent and Sam.

After school was out, I started to panic. Wait, we need a medical opinion, we need a second opinion. How can this be? As I drove to get Zach, I put in a call to Sam's doctor to tell him what we found out and to find out what we do from here. I had to leave a message, but I knew he would call later.

All we wanted to do tonight was to spend time together (Brent and I) to process, to figure it all out. But, as is life with little boys, our night was crazy. Brent was taking both boys with him to Zach's soccer practice while I was going to attend (ironically) Zach's parent meeting for the districts talented and gifted program of which he tested into. On this day, literally, one child was staffed into our districts special education program, while the other was staffed into TAG.

I was waiting in the parking lot when Dr. Kuperman called me back on my cell. I was so upset and still denying, but he was so kind and caring. He said he wasn't real surprised and told us exactly what we should do next. He had referrals ready the next day for speech and OT therapy. He really helped to calm us. He even gave us some suggestions for some thorough medical diagnosis too, and where to seek those.

Finally bedtime. Brent and I could be together alone, to talk, to be sad, to be mad, to wonder, but to smile too. Whenever we talk or think about our two beautiful boys, they just make us smile. Even when it is sad news.

It is a year later. Sam is speaking so much better. We are still in speech and OT therapy, he also receives therapy at school in his early childhood/special education program.

While we have no clue what his future will be like, we do know this...
...that God is bigger than all of this and can take care of us
...that Autism is not a death sentance, it is just another way of life
...that if you keep humor in your life, there is less pain
...that if you keep family close, there is more love
...that if you live for each day, each moment will last forever!

A year ago....we thought our world would end.
Today...we are better, closer, more in love with God, each other, and the world. All because a year ago...we learned to look at the world more differently and unique, through Sam's eyes.

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's the little things... (Journal #16)

It's the little things that can make life so awesome. While we had the typical meltdowns this past week, it has been the little things that have made it one of Sam's best weeks in a long time.

It's the little things...like his finally letting me complete the home therapy part of his speech this week without major distractions and tantrum's. The bad part of his rigid routine's, is that once something has been done a certain way with a certain person, he doesn't let it happen. In the past, it is hard to complete tasks like the home speech work. Sam will scream and push me away any time I start to work with his picture cards or words and will say "NO words, Ratel words." (Ratel for Rachel). Or when I correct him the way Rachel (private SLP, above in pic) does in her sessions (because he understands that way best), he gets very angry and will even hit sometimes saying "oty Ratel" (only Rachel). Or he'll sometimes say "word teater!" (word teacher, Rachel), meaning only she can teach him this. Well this week he FINALLY let me and accepted his rewards for completing his task! Usually, anymore, we can't even reward with typical treats or anything, so I have figured out to actually wait until he has started a task he wants to do and then interrupt by using the "First this, then that" trick. It's the little things...that make life so great!

It's the little things...like him finding a friend to play with at the part (oh my gosh, I meant to type park, but that is how Sam would say it, how funny, how I start typing like he talks!) yesterday! We try to take him to lots of places a week where he will be forced to socialize with others and to force him to handle the loudness and business that can sometimes overwhelm him. He has not been a fan of indoor playgrounds like our towns Maple Maze or New Brighten's Eagle's Nest or any McDonalds Playplace. It usually makes me sad to watch him at these places, as he will either cling to me or stay very close and often times cover his ears. I will literally try to push him up in or encourage him to talk to someone. He will also just hang around the entrance of the gym set and just watch others going in forever.

This weekend was great though, Brent and I took the boys to Edinborough Park in Edina. It was only Sam's second time there. He went off right away and came back first with a friend before his very social, 8 1/2 year old brother. Sam was so excited. He brought his friend to us. Granted, it was a younger child, who would do and go wherever Sam told him, but we were so happy it brought tears to my eyes (if Brent wasn't a guy he would have said the same :). It's the little things...that make life so great!

It's the little things...like the fact that he is finally getting sleep and doing so much better at school. I have been reluctant in the past to post it, but yes, Sam is on meds for sleeping at night. While the "biomed/alternative med only" group will "post me" now, I am not afraid to say how much we trust our medical community. And, while others will "ooooooo, they are doing meds......", I would rather do something tested than "stuff" that has no FDA approval or doctor approval. He is functioning much better than before. While not perfect, and never will anyone be perfect, it has been great. He will focus more for us at home, perhaps the whole reason he will sit better to do the home therapy stuff, and follows us better. We all need our sleep. Now that mom is finally getting more sleep too, we are all much better for it. It's the little things in LIFE that can make it so GREAT!

Autism Podcast (Journal #15)

I have been blessed to find this great resource to those families with Autism. "Autism Podcast" is a great website that features resources, talk shows, quick tips and advice for parents. The website's creator is Michael Boll. He is dedicated to providing information about working with children on the autism spectrum. The website provides interviews and other resources. Audio content is distributed on this website and as a podcast. You don't have to have an Ipod to listen to the podcast. The link to his page is provided on the column to the right under links.

While a year ago, Brent and I thought our world was shaken with the "official" diagnosis, I will retract and say it was "shaken up" to only be sorted and sifted with blessings.

Sifted blessings:

• We have found this great community of support and resources through the Osseo School District and Sam's therapists and teachers there (LeeAnn/SLP, Jenny/Special Ed teacher, Tracy/OT, Carol/para). Incredible!
• We have met people who are in our same shoes whom we can share stories with at North Memorial Hospital Therapy. We have the best Occupational Therapist (OT) in Melody, and the best Speech and Language Therapist (SLP) in Rachel.
• We have the BEST family support ever, Grandma and Grandpa C, Stacy's family, Kelly's family and many more extended family.
• An incredible church family group, Pastor EvaLyn and many, many friends.
• Our pediatrician, Dr. Kuperman and his nurse and the Partners in Pediatrics staff
• And last, "the Autism Web Ring" of which is a blessing to be a part of. That is also how I discovered "AutismPodcast.org".

Thanks to everyone for your constant love and support!