May 31, 2009
The Ants Go Marching One By One (Hurrah? Really?)
You’ve seen the picture of the fawn in my yard, and if you haven’t, well, look here. Now the downside to living in the country…Possibly the world’s largest ant hill, or at least the largest in Maryland, has been found in my driveway.
What size ant does it take to make this?!?
I got disgusted and grabbed the leaf blower, blowing this thing to kingdom come. And then Steve reminded me that the ants lived BELOW ground, and that I just made their excavation job that much easier…{sigh}.
Does anyone have a recommendation for a really great ant – um… – removal product? Thanks!
May 30, 2009
The School Play
Yesterday was the Mother Goose Kindergarten play. Jon was a mouse in Hickory Dickory Dock. Kept the ears on and everything! Unfortunately, I couldn’t get a decent picture. If a friend sends one, I’ll post it later.
The play was an astounding 45 minutes long. The entire grade must have about seventy kids, and most had a speaking part. They all had some role in a Mother Goose rhyme, most of them incorporated into song. Jon and three other boys circled a fourth boy dressed as a clock. He participated! He didn’t scream! And he sat or stood appropriately on the bleachers for the rest of the play. OK, he was mainly swaying back and forth to music, sucking his thumb, or biting his hand, but there was never a meltdown. How far we’ve come. I’m so proud of him.
The mother seated next to me also has a child with autism, and he did just as well. The boys were placed in the upper corner of the bleachers, presumably for an easy exit if one of them had a meltdown. Their special educator was able to be in the wings next to them, also, to keep them on track.
For these two, to sit, attend, and participate for this long is a dream come true. And, I believe, a real tribute to their inclusion class. Each of the boys has 1:1 support for the whole day. I can’t speak to specifics about the other boy, but Jonathan has far exceeded what some would have imagined. He sits in the morning and independently does his table work, which includes writing. Jon has very poor fine motor skills at this time and can’t write, so he takes out his alphabet stamps and stamps it out, and does any related activity on the paper. On Wednesdays, he participates in 1-1/2 hours of math groups. That is amazing, as Jon HATES math.
Jon’s desires to be with his peers and to learn, have taught him that he must remain calm to stay with his class. That is not to say that he is calm the entire time. Last week when he was approaching his limit, he requested a drink, went to the fountain, and then rejoined the class. The key is that he recognized and communicated that he was approaching his limit. (A great example of recognizing and communicating limits can be found in this blog entry by Cale, a college student who has Asperger syndrome).
I’m going to keep pushing Jon’s limits and insisting others do the same. This kid constantly surprises us. He’s amazing.
May 28, 2009
Siblings, Part 2
Kate had a graduation ceremony for all of her imaginary friends Sunday night. When Kate plans a party, it’s always quite the affair. She had play food, a song, “graduating” (we threw imaginary mortar boards in the air), and finally a speech. Oh, and hand-written invitations. It was held in the guest room. Jon did not want to come. Kate was bummed for a minute, then she rebounded. She’s used to it. Steve and I attended and enjoyed her lovely event.
Kate is amazing at including Jon and getting him to run and play. He’ll follow her like no one else. And what we love most, is that she really wants to play with him. We don’t have to ask her to do it. And when he doesn’t participate, she takes it in stride, like she did at the “graduation”. So far, she’s shown very little resentment toward him, even though she did recently say she wished he wasn’t part of the family (See my siblings post). But that’s normal sibling stuff.
Every sibling of a special needs child has a tough situation, sometimes harder than what parents face. As a parent, you have the innate knowledge that your children will most likely outlive you. A sibling you have forever. And that comes with awesome responsibility.
Jon and Kate are only twenty-two months apart; Kate was conceived before we realized that Jon had developmental delays. When she was two weeks old, I had to take her along to Jon’s speech therapy. By the time she was one year old, Jon had been diagnosed with autism, and we started an intense, thirty hour-per-week ABA program at home. For liability reasons, an adult had to be in the house, so Kate and I rarely got out, and she never had any exposure to typically-developing kids. Thinking she should have more exposure, I enrolled her in a 2’s program, but that turned out to be a bad fit for her. Then I enrolled her in preschool, but she wasn’t fully toilet trained, and they gave her a hard time – unbelievable that a preschool would do that, but true. Add to that her shyness, and that particular preschool was not a positive experience. When we moved from San Francisco to Maryland, something snapped and she came out of her shy stage. And we enrolled her in a lovely preschool where she has flourished.
Putting Kate into the outside world was a huge mixed bag of emotions for me. She needed the socialization, that’s for sure. But some part of me was very sad that she would realize that not all kids were like her brother. I worried that she would treat him differently, maybe tease him or something.
I didn’t need to worry. Kate is the most accepting kid I’ve ever met. In her own words, she’ll explain to others that her brother can’t talk because he has autism, but that he’s trying! Any word that comes out of Jon’s mouth is reported back to me with such enthusiasm it would melt your heart. She’s his biggest cheerleader.
Will she always be this way? I really think she will. And it’s all her. We never taught her this. She’s just an amazing, wonderful, sensitive, accepting kid. She certainly feels responsible for her older brother. Which worries me – how will she feel when kids make fun of Jon in school? Will she be able to balance her own life with the responsiblity of a brother who has autism? And the future? We’re saving as much as we can for both of their futures, but who knows how much help Jon will need?
These are the questions that keep me up at night. If anyone has some insights, please, please share. Come on over to www.jonsroom.com to share your ideas about dealing with sibling situations.
May 27, 2009
An Amazing Sight
Tonight we saw the most amazing sight. We live in a very rural area and often have as many as five deer in the yard. This evening we were watching a doe come pretty close to the back of the house, and Kate and I went to another window to follow her. That’s when we saw the little critter on the other side of the fence from the doe. It was a fawn, shaky on its legs, not more than a day or two old. And it was separated from its mother. The fence ends in the woods, and it must have gone around.
Steve took this pic from our family room window. I've never seen a fawn this close up.
I got so sad. I assume the doe didn’t want to jump the fence because she didn’t know how to get her baby back to the other side. There is a gate right where they were, but to go out and open the gate would just make the doe run and frighten the fawn. I finally couldn’t watch anymore, it was really just making me so upset, so I went to another room.
Then I heard Steve go out the front door. He opened the gate, and the doe ran into the woods at the back of the yard. The fawn froze where it was, in a corner formed by our house, the fence, and our air conditioning unit. Ten minutes later, Kate came running up to me, yelling, “Come quick! There are three of them now!” I got back to the window just in time to see two adult doe and the fawn, on its shaky legs, running through the yard.
It was a really nice break, right between washing the dishes and helping Jon with his homework. It was an amazing sight, one I’m not likely to see again.
Another pic of the fawn!
May 26, 2009
Seizures, and What they Feel Like
Our local autism society invited a wonderful new author, Judith Scott, to speak last night. Her book, Out Came The Sun, is about her family’s journey through the diagnosis, and subsequent hardships and successes of her daughter who was born with Partial Trisomy 13, a very rare genetic disorder.
I’ve just started the book, and I’m sure I’ll have more posts inspired by it, but let’s start with seizures. Mrs. Scott told us that her daughter had a seizure disorder, not uncommon for persons with Partial Trisomy 13. When the talk was opened to discussion, I asked when the seizure disorder presented itself.
Her answer (the gist, anyway): “Around age 8. It would normally present between the ages of 6 and 8, and we thought we had escaped. But then we got the call from school that she had a grand mal seizure. Luckily, we found the right medication.”
I explained that I think about this often, because there is some rate of co-morbidity between autism and epilepsy. And I think about how hard it would be to put Jonathan on a medication if he were unable to tell me how it made him feel. And I know how hard this is, because I have Epilepsy, diagnosed at age 38.
Her question to me: “Do you know when you are about to have a seizure? Can you tell, do you feel dizzy, for example?”
Now, I’ve only had two grand mal seizures in my entire life, nine years apart. They didn’t diagnose me until after the second. But before the second, I kept having flash-backs to how I felt before my first seizure, and I kept spacing out, which I learned later were petite mal, or absence, seizures.
I’m giving you all this background because it occurs to me that I know more than a few children on the spectrum who have seizures. It’s easy to imagine what a grand mal might feel like, not as easy to realize how awful the absence seizures are.
For me, with each grand mal, I lost a few hours of my life that I will never get back. I will never have memories of starting to convulse, of falling, of incontinence (this is where memory loss becomes a blessing in disguise). My first memories after a seizure are of being startled and fighting, hitting out at anything nearby. Then IV fluids, calling the neurologist, and making EEG appointments. And then being exhausted and scared.
The absence seizures, nobody talks about, perhaps because they are hard to comprehend. You remain conscious, yet you lose time. You can be walking, and realize you don’t remember getting from point A to point B. When I try to explain this, I inevitably get, “Oh, that happens to me all the time. I’m constantly looking for my glasses and forgetting that they’re on the top of my head, or finding my keys in the refridgerator. You’re not having seizures.”
But it’s more than that. I remember finding myself outside my apartment building with a bag of garbage in each hand, looking at the dumpster, yet having no idea how I got there, or what I was supposed to be doing. Finding myself in the break room in front of the candy machine with quarters in my hand, and not able to comprehend why I was there or what to do at the moment. Of bumbling my way through conversations with my boss, and honestly, that job didn’t last too long. My personal favorite? I was watching television, and it was too loud. I was holding the remote and it wasn’t working, and I couldn’t figure out what to do. I was totally helpless. My brain could not process either option of walking to the television to adjust the sound, or getting new batteries for the remote. I simply had no idea what to do, how to perform the simplest of tasks that I had done nearly my entire life.
So that’s really it, absence seizures are more than spacing out, they leave me feeling helpless. It’s awful and scary.
Why am I preaching, droning on about this? Because most parents are loathe to medicate, especially if their children cannot easily take medication. The thought that a child might be medicated for life is scary. And as I mentioned before, that not knowing how a med makes your non-verbal child feel is scary. So it’s easy to blow off these little seizures that don’t leave your child convulsing on the floor. And if you haven’t experienced them, you don’t realize how scary they really are to the child or adult who is having them.
Please, if you suspect that your child might be having absence seizures, or you see your child spacing out, see your doctor. Don’t blow it off. It can be controlled, and it’s worth it.
May 22, 2009
School Follow-up
We’ve made a decision for Jon’s 1st grade school. For those of you who have read my first post (What I Really Learned on Tuesday), this might be a surprise. We decided to go with the school district’s recommendation and place Jon in the more challenging situation. He will go to a school that does not have a separate classroom for special needs students. He will be included in the general classroom for the entire day, except for therapies. When he does need 1:1 attention, he will work at his desk with a special educator. The classrooms for each grade are in pods, that is, open to each other. And he will still have close adult supervision.
Are we crazy? Jon would still have had an aide and been included in a general education classroom to the extent that he could handle it, and then be removed to a separate classroom for the special needs students, a “home base” if you will. There are individual classrooms which are much less distracting.
After much soul-searching, I have come to the conclusion that we can’t try to hold Jon back. He rose to the challenge of inclusion this year in Kindergarten. It wasn’t easy, and he still has little meltdowns, but after a break he can generally come back and either rejoin the class activity or work alone at his desk.
And with this year’s challenge, Jon has started learning some things in the classroom setting without 1:1 support, even some math. I saw him in gym class one day, paying attention and participating. His social skills have blossomed. Perhaps not age appropriate, but the other kids invite him to join in, and he wants to. That’s huge.
The new school will be an even bigger challenge. We’ll go to “moving up” day in June, where he’ll meet some of next year’s classmates and the teachers, and get to see the school. I’ll arrange some visits before school starts to get him acclimated to the building. But he’ll do the hard work when school starts. It may take awhile, but he’ll get there. He’s amazing.
May 10, 2009
Happy Mother’s Day!
Kate is very excited about Mother’s Day – she can barely keep her secrets. She and Steve planned a secret breakfast, and Kate slipped up last night at dinner and said something, then backtracked her comment into some incomprehensible story about her imaginary friends. She brought a present home from preschool on Friday that I refused to open until today. So did Jon, but I can never tell if he understands the significance. In retrospect, I should have opened his on Friday, while it was on his mind.
I constantly have to remind myself to give Jon more credit, though. At Christmas, the entire Kindergarten class went shopping for their families. Parents were encouraged to donate small items, and a price was attached to each – 2, 5, or 8 cents. Each student brought in 30 pennies, and the presents were arranged on tables by family member and price. It was a madhouse, about 60-5 and 6 year-olds rummaging through everything.
The students first walked through the two rooms very quietly in line, and then they were set free. Jon’s teacher was with him to keep him on track (including a quick hug for me), and she told me that after she led him to the appropriate tables, he chose the presents on his own. They were amazingly thoughtful – a booklight for Dad, an avid reader, stickers for Kate, our budding mixed-media artist, and for me, farm animal cheese spreaders that fit into a ceramic barn. I love them.
So even though Jonathan appears lost in his world, intent on watching PBS Kids, DVDs of the original Electric Company series, and playing computer games, it’s important for us to remember that he notices and understands everything. That just because he can’t talk, it doesn’t mean that he can’t understand and be thoughtful of others. He just has a different way of showing it.
And when he gets back from the park with Steve and Kate, I’ll open his Mother’s Day present and show him how much I appreciate his thoughtfulness. And try to remember to do that everyday.
The Future With Autism
I read an article today in Washington Post Magazine by Glen Finland about her son, a twenty-something young man with autism. He was verbal, literate, and had at least some competence with money. His parents had done all they possibly could to get him ready for adult life. He was enrolled in the College Living Experience in Fort Lauderdale, an “expensive, two-year program” with a “residential component geared toward independent living, teaching task completion, money management and social skills to developmentally disabled young adults”. His parents stayed behind in Virginia, after all, that was the point, to move him toward an independent life.
The young man happily called his mother one night from the Everglades. He had met a man on the Internet who had agreed to drive him there. A total stranger. The author and her husband got enough information from him to scare the driver into taking their son back home. He was unharmed, but what if he hadn’t called from the trip? My heart stops just thinking about it. This terrifies me. The future terrifies me.
So what now? I’ve always been focused on the present – the most appropriate school, what therapy, what activities. Time to get realistic about the future.
If you have a child with developmental delays, what thought have you given to his or her future? I’d appreciate advice – this line of thinking is new to me.
To read the full article referenced in this entry, you’ll need an account with the Washington Post (it’s free). You can then find the article here: http://www.washingtonpost.com/wp-dyn/content/article/2009/05/01/AR2009050101792.html?sub=AR
May 7, 2009
Siblings
I heard the saddest words come out of Kate’s mouth last night: “I wish Jon wasn’t part of our family.” My dearest Kate, I know you didn’t mean that. You’re five years-old, and from what my friends tell me, most of their children have said that about a sibling (who didn’t have autism) at one time or another. I’m positive my brother said it about me, and probably vice-versa. And Kate, I know how much you love Jonathan. It shows every day when you are proud of him for saying a new word, when you draw him into your silly little nighttime games, and when you let him sit on your bed for a story, and when you tell everybody you see about every one of Jon’s accomplishments. Even the stranger in the grocery store who also happens to be picking out bananas.
I tried not to react, but I probably failed. After all, she needs to be able to express herself. Her feelings should be acknowledged. The real trick is not to get to the point of being resentful. Because a sibling is with you forever, and a special needs sibling…As much as we work towards Jon’s independence, as much as we try to save toward any assistance Jon may need, Kate will always be in the picture.
I fully intend to enroll Kate in a sibling support group like SibShops when she is old enough. But what about now? My gut tells me that this was one statement made by a tired little girl who was enjoying a pre-bedtime cuddle alone with her mom and dad. That I should ride it out and see if she makes a bigger deal of it. And that’s what I’ll do – for now.
I would love to hear what your experiences are with this. I know I can’t be the only one going through this.
