Friday, April 21, 2006

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!!!!!!!!!!!

Monday, April 10, 2006

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!

Tuesday, April 04, 2006

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!