spectrumom

Autism awareness month descends on us, as it has descended on us every April for the last 14 years (I assume we had autism awareness month back when Sam was first diagnosed.  I was too caught up in the anxiety of the time to notice.)  Scores of pictures of cute little kids will cross my Facebook feed.  People will call me and email me asking if I've seen the latest treatment, cure, information. And frankly, I'm most irritated. Nathan has been having a very bad time.  And, while we've had med reactions, and blamed it on colds or stomach bugs, the fact remains that he never seems to return to a pleasant baseline anymore.  He spends his day rotating between near lethargy and aggression.   We had to restrain him yesterday because he was trying to hit and bite us.  He hit Sam on Sunday, his BSC on Monday, and his little brother Tuesday as we were telling him that Nathan was calm and unlikely to hit.  My husband says that on average he is at an exce...

Sam turned 16 this month.  I feel like I should have something profound and deep to say about the progress he's made, my fears for the future, blah, blah blah. What I have is a series of vignettes. 1.  Back when he was about 9, Sam asked when he could drive.  Thinking it was so far in the future I couldn't imagine it, I said "16."  He never forgot.  And brought it up over and over.  As 16 loomed closer and closer, I started telling Sam that it was not likely he would drive.  His attention cannot stay focused outside the thoughts in his head.  He may drive someday.  But someday wasn't coming fast enough. On his birthday I told him "Happy Birthday!"  He smiled, and then it faded.  "My brain has not developed enough for me to drive."  I see his classmates going for their learner's permits.  And it is a small knife in my gut. 2.  Sam had a paper due for history.  I've been at a meeting and very busy with work...

Nathan is in the middle of starting a new med that we hope will break down some of the barriers that keep him from talking.  His receptive (heard) language is rapid, faster even than his two brothers-ask him to do something and he does it.  His expressive (spoken) language varies from 2-3 words to none at all.  So we started memantine in an effort to help. However, irritability can be a side effect. We were also trying to wean his Risperdal.  To off, if possible.  And Risperdal helps with irritability. He has 1-2 days a week it seems that he just wakes up and doesn't go back to sleep. But when he woke up at 3, then 2:30am, then just didn't bother going to sleep All.  Night.  Long.  we gave up and restarted the twice a day 0.5mg risperdal Then when he started cycling up and down with irritability we increased back to where we had been - 0.5 in the morning and 1 mg at night.  He started sleeping again. He's getting a cold. Yesterd...

Covering old ground here.  But, as things do, the topic of cure is rearing its head in the online community again.  And, as I say, I have a somewhat unique perspective. I love all of my boys completely.  And I know that if Isaac and Sam were all I had, I might want ever so much more for them than I already do.  I might want for them to act more 'normal.' Isaac with his stuck thoughts, immersion into Stampy's world of Minecraft, revving from calm to swinging fists if pushed too fast, too hard. Sam with his always stuck thoughts, his constant stimming.  His love of girls, but uber-nerdiness limiting his likelihood of connecting with one. But I do love them and accept their versions of autism.  Isaac who shares our love of science and expands our interests like a bomb pushes out the walls of a building.  Sam, who you think wasn't REALLY listening, but then comes out with amazing facts said in a matter of fact tone that lets you know it is the trut...

Years ago I was out with my younger two boys. My little was was in the transition between baby and toddlerhood.  We did not yet know that he was on spectrum, and in this story it makes little difference.  He was in a stroller with all the wrangling that entails. My middle son in the first 9-10 years of his life, in addition to being autistic, was in constant motion in a way that very few people I have ever seen.  He was able to get around our living room without touching the floor by using not only the furniture, but the windows and fireplace mantle and arms of the elliptical.  Three or four times in a minute.  Extremely impulsive.  My husband would carry him in a sling as a toddler and describe it like trying to control an octopus.  He would grab things you didn't even realize he was observing and while trying to wrestle that away he would grab something else.  However, now he was 5 or 6 and out of the sling. We were going into a mall and s...

There are certain things I only would do for my kids.  Changing diapers on a six year old.  Wiping snot off a 12 year old.  Yelling at a 15 year old to stop eating his boogers.  Going to church. My husband and I have years of church under our belts.  We know all the hymns.  We have collected offering, helped with services, run the sound system (him, not me), cleaned.  We went to church schools, Bible schools, church camps.  We were in our church's version of Scouts.  We met at a college that is run by the church we grew up in. And then we became atheists.  I mean, we stopped going to church before then.  But then we admitted there was an issue we had mentally skirted for years.  We just didn't believe.  He knew it first.  It took me several more years. So we don't go to church.   Except once a year.  On Scout Sunday. As you can imagine, we are trying to fly under the radar here.  Now th...

I was thinking tonight about what kind of parent/grandparent I want to be to my children when they are adults. I thought: -I'll be there to babysit -I'll ask them what they need instead of assuming -I'll learn about what their kids need and like -I'll take them for weekends so my kids can rest. There was a lot more. And I realized that was all reactionary - those are the things I wish our parents would do for us, because of our special needs.  I have no idea of what my kids will need.  I don't want to parent in reaction, because it leads to filling needs that aren't there.  And missing other needs that are there. How will I balance the needs of my kids? First, I will ask.  What do you need most?   Second, I will remember time is the most important thing you can give.  Someday I will be too old and infirm, and eventually too dead, to be useful.  The most important time is now.  Give generously of time, because it means so much when ...