Tuesday, June 30, 2009
The weather has now changed drastically with an almost 30 degree temperature drop. It went from sizzling hot and humid to grey, cold, and wet. Not ever a good thing in any one's book. Especially Daniel.
We are on the last week of Zachary's baseball season, much to Daniel's JOY. He is so done with this. I don't blame him. But I end up missing the social time of talking to the parents and cheering on our kids on a summer evening.
I've had some contact with people through email and school is still running through my mind. This is unusual for me on the last day of June. We have a lot of changes coming this year which always makes me anxious. My mind turns to Daniel's academics. Usually this thought process doesn't start until the temperatures start dropping (but I guess they actually DID), maybe that is what is bringing me to fall. I was thinking of Daniel's IEP. The majority of Daniel's work is modified now which means he isn't doing the same work as his peers, except in math where we are barely holding on. We have some good things lined up for this year, but this will be a critical year in terms of academics. The principal at the new school, very abruptly, asked in our IEP "what track is this child on" with academics. That still is sitting very poorly with me. I hate hate hate, when they try to track our kids. They start it before they are even in kindergarten. I always push to have him as challenged as possible. All parents want to know what their children are capable of. I've had parents of neuro typical kids ask me if I think Daniel will get married, live away from home etc. Depending on my annoyance at the time, I have been known to say that they don't REALLY know if their child will have those things either. Lots of people don't get married or live in their parents house WAY too long. At least Daniel has an excuse! I know that where ever Daniel ends up I want one thing for him. I want him to be happy and I will never underestimate him.
I will keep trying to balance between pushing him to achieve without over stressing him. To get him to want more, without making him too uncomfortable or out of his box. Cale from Spectrum Siblings wrote a great post about his brother Carl today. Click here. Carl reminds me a lot of Daniel. However I suspect he might have been more successful in school than him. Nevertheless, he is an inspiration to me for what is possible for a classically autistic child. I think the Asperger kids have a hard time as kids, but once they are adults they can kind of find their own groove and make their way in the world. I hope the same for both of my kids.
Friday, June 26, 2009
Baseball season is in full swing for Zachary, there has also been a basketball camp for him. Swimming is huge. Our average time in the car increases dramatically with trips both west and east from here. Daniel has been very patient in all of this. Much more so than ever before. We actually sat through the 9 year old baseball game from hell the other day in oppressive heat that went on FOREVER. We had to change fields before the game. All things that spell disaster for Daniel, but he held it together. Honestly a bit better than some of the parents did! I, early on, knew that this was hard for him and whispered in his ear that if he kept it together with no screaming or crying we'd go get ice cream once the madness stopped. This bribe (I like to call it a REWARD) worked brilliantly and he completely complied. I should have whispered something similar to my husband, but not ice cream, because he almost snapped (me too!) by the end of this night. But Daniel, he held strong with the promise of chocolate chip ice cream on a regular cone. It's good to know what your children's buttons are and which ones to push at which times.
We had spent part of a delightful afternoon swimming at our neighbor's house with several people from the 'hood. The next day we were supposed to go swimming at our friends house. We are making the rounds! I started a post about the last time we went to Lisa's but I never finished it. She has an amazing pool and since our first visit there this pool has become the holy mecca for Daniel. He has been obsessed with going back. Yesterday was to be our day. It's been on the calendar. But I had been following the weather and scattered storms had been in the forecast for that day. I continually warned him that it might not work out. Looooooong story short. It didn't work. On the way there (it was cloudy at our house but not storming or raining) we drove into a huge storm. I called her and she called it off. I turned around to go home. Well, all of the waiting, patience, and build up of a few weeks came flying out of his body all at once. He lost it. I haven't witnessed a break down of such amazing force in YEARS. His body was thrashing in the car and frantically grabbing at Zachary is such a mad rush....I'm trying to think of something to compare it to and I can't. I've heard the "all brothers hit each other" but I don't think it is in a mad rage like this. He looked murderous.
I was driving you understand and when he goes after Zachary I lose it. So for all of you who marvel at my ability to stay calm, cool and collected. Here's your pay off. I LOST IT. HUGELY. The times that I have lost it at this level have always been in the car. There is something about my inability to intervene and protect Zachary, Daniel's potential to pummel his head on a window and me not being able to move that is sure to make me snap. Snap I did. I ended up pulling off the road (into a church, which was sort of funny to me, because if you could have seen what was going on in our car juxtaposed against the church, it was nothing if not ironic). I had Zachary move to the 3rd row of seating, out of Daniel's reach (thank goodness he wouldn't ever take off his seat belt while moving) and screamed at Daniel until I got his attention. I then took away all computer for the day. I usually wait until we arrive home to give these sort of crushing punishments but I'm a bit out of practice in these sort of fits. So that made him lose it even more. Not only does he not get to swim at his favorite spot, but he can't even go home to the comfort of his computer. Now I've done it.
Long story long. This went on for THREE HOURS. Yes. Three hours. He was demanding access to the computer. I would not give. There is no excuse for physically attacking someone. Ever. He wanted to know when the new date was to go back to Lisa's. Despite my assurance that we would "at some point" "another day" etc. That wasn't enough. I told him they were going on vacation so we couldn't go. That finally stopped his questions. It took Todd coming home to flip his switch. We ate dinner and I went for some retail therapy. It wasn't frivolous because none of my clothes fit me anymore. So I wasn't exactly thrilled to be looking up a size. Something I haven't had to do in about 15 years. My day was not going well.
But today is a new day. Todd and I have a party to go to tonight. The humidity has broken with the storm somehow making everything seem less oppressive and I'm about to go meet Todd's mom at a half way point between our houses, have lunch and hand the kids over to her for an overnight and swimming at their house. Things are looking up.
Thursday, June 18, 2009
Joseph is a JOY. Adorable, smart, and makes everyone around him smile. He is a mover and shaker though and his parents do a wonderful job keeping up with him. They share everything 50/50 and are great people themselves. Our friendship has certainly grown since that first day when Emma and Zachary were in Kindergarten together. In our school the parent or parents come in with them for a few hours and then all go home together. The real first day is sort of the second day, and on that first day I remember the moment I met Amy. I was a wreck. I was sort of crying. As usual I wasn't crying because my baby was starting kindergarten. No, as usual it had to do with Daniel. Zachary's first day was being overshadowed by a sudden change in Daniel's schedule. His parapro (aide) that he'd had for a year and a half was suddenly bumped (due to seniority and union issues) and my world and his was immediately turned upside down. I was scared. I didn't know what we were going to get. It turned out great, but it's one of the moments of fear and all of your planning goes out the window and you are left feeling helpless.
Amy started talking to me and told me she has a child with Down Syndrome and it was just one of those times when you think "Thank God" because you know that they understand too. They feel in their heart the same way you do. They aren't just trying to say the right things. They know. I'm very thankful that I met this family on that day. Down syndrome is something that is personal to me too. My best friend growing up had a sister with DS. I was officially the 8th child in their house and practically lived there. I was an only child and I loved being immersed in the hectic household. Lisa considered me her sister and I consider that quite a privilege to be accepted that way. I volunteered at Special Olympics as a teen when Lisa was a part of it. Once I had the privilege of pinning the ribbons on the winners as they stood on top of the podium. It's one of my favorite memories from that time in my life. The joy, pride and exhilaration the athletes felt was palpable. It filled me with the same emotions. Because of her, special education was always a part of my life. Little did I know that it would always be a part of my life, for the rest of my life.
This is a very long way to let you know that Amy posted a story from the Boston Globe the other day. It touched my heart so I wanted to share it. Even after the week I've had, I still feel blessed. Every single day. Even with toilets overflowing, my migraines flaring up and hardly being able to take Daniel perseverating seemingly louder and louder every moment while my head is about to explode last night. The feeling that I had to get away so my head could get quiet. QUIET. I still lay my head down every night thankful for the day I've had with my family. So I hope you enjoy this.
Tuesday, June 16, 2009
Daniel was already up and around yesterday, which is pretty typical. Unless my husband is here, Daniel is usually the first one up. These days he keeps busy on the computer or watching movies until someone gets up to make him breakfast. (Three pieces of whole wheat toast NO BUTTER, three slices of bacon and a huge glass of water please!) Zachary was still sleeping and Todd, was at work. Probably very happily at work after my call. I heard some excessive movement, OK I'll admit it, it was 8:15 and I was still in bed. It woke me up and I figured he was rifling through the pantry grabbing some pretzels. I dozed off for another 15 minutes or so, and I clearly remember thinking, "I can go back to sleep for a bit, what's the difference!" That question was soon answered when 15 minutes later I walked into my kitchen on my 18 month old Brazilian walnut hardwood floor and it was all wet.
I then realized that the water was leading from the 1/2 bathroom into the eating area of my kitchen and was stopped there by the 10' round wool rug. My fears were soon realized when I saw that the toilet was plugged up after a morning "visit" there by Daniel. It plugged and overflowed and he WALKED AWAY. I grabbed towels as quickly as possible and started soaking up the water (while thinking of my floors warping and curling). I (count to ten) very calmly and go downstairs to Daniel who was playing computer games and said, "What happened buddy?"
"The toilet is leaking, oh dear." (so he did know and it didn't occur to him to come get me)
I then explained that in our recent "rules" that this would be under the category of "emergency" which means mom or dad should be told right away. EVEN IF THEY ARE IN BED, or outside, or where ever! Come and find us and immediately tell us. I said this all unbelievably quietly and calmly. I even surprised myself this time.
"OK, next time." (this is his favorite answer)
I walked away, dreading the rest of my day. I cleaned up the wet floor, moved the kitchen table and chairs, dragged the heavy WET rug outside onto the (very thankfully) very sunny deck. It crossed my mind that maybe I should wet vac the rug so I went to the basement on the other side from where Daniel was. 3/4 of the basement is finished and 1/4 is the furnace room filled with tools and storage. I walked into the furnace room to see water still dripping from the ceiling, the floor soaking wet, with a trail to the drain and Todd's tool bench covered in "water". Sigh. This was going to be a helluva day.
I asked Daniel to come into the furnace room with me. He said "oh dear everything is wet".
"yes" I replied, "that is because the toilet overflowed and when you let it sit there on the floor it went down vents and between the floor of the bathroom, and then the ceiling of the basement."
His eyes got very big as the realization hit him. Ah consequences. He had NO IDEA what could happen if he left the water on the floor, overflowing. NOW he does. I am going to pat myself on the back because I was so relaxed. He apologized over and over. I told him I just wanted him to understand what could happen and WHY IT'S VERY IMPORTANT TO TELL SOMEONE! The fact that the rug spent the day on the deck was disturbing enough to his world. He must have asked me 10 times throughout the day when I'd move it back. I would reply, when it's dry and CLEAN. Finally at the end of the day I moved everything back into it's place. Everything was dry, clean and back in it's rightful spot. This made him visibly relax. He was never really upset or crying during the day, but it obviously made him anxious that things were out of order and he knew he was the cause. He has since told me several times that if that happens again, he'll tell us right away. I think if it's the toilet overflowing he will. But what if it's the sink? or a pipe bursts? or a hose is left on outside? Will he generalize these situations? I don't know. Honestly, I don't think so. But I guess we'll find out, won't we? You never know what's waiting around the next corner in our life. It always seems to me that as soon as I start feeling cocky about how far we've come, something happens as if to say, "hey lady! don't relax too much! You have to be prepared ALL the time. You feeling good? TAKE THIS!"
We've talked a lot about fires at our house recently. We've gone through escape plans, it's in the rules of staying alone, for 30 min or less. Who to call where to go what to do. I guess we didn't cover floods. There are so many things that can come up, you can't cover everything. So last night after my "crappy" day of work, I had Baskin Robbins for DINNER. I deserved it. Take THAT!
Sunday, June 14, 2009
Daniel has had issues with this his whole life. He likes to chew and eat inappropriate things. I am happy to say that this has lessened a great deal, but it has not disappeared, and I don't know if it ever will, but I am hopeful. When he was younger he chewed on the sleeves of his clothes. He would do this until his sleeves were wet half way to his elbows, then he'd start screaming because his sleeves were wet. Then if you'd try to get him to change his clothes and he'd scream because he had to change his shirt. GAH! (He STILL doesn't like to change his clothes half way through the day.) It happened over and over again, and was very frustrating for all.
One of the strategies we used to get him to stop chewing on his sleeves was the "chewies" his OT (Occupational Therapist) gave him. He still uses these at school, although not as much as he used to. We have a LOT of them at home, but it is pretty rare that he picks one up. He knows where they are kept and just walks over to get one when he needs it. He seems to more when he was stressed out. He never chewed gum, which is also a popular strategy. The chewies are sort of like phone cords. I'm realizing that if you are really young you may not even know what a phone cord is! So sad! It isn't actually a phone cord, so please don't cut one to use for this! So here are some pictures.
They are really big enough that they (probably) won't swallow them. My thinking that if it did happen they could still breathe because of how they are made. That might be insane to think that way, but I know it went through my head. The thickness is something that a lot of kids on the spectrum like at least the kids that I know who have used them. To see one that is similar but in a necklace or bracelet form, click here. But Daniel's are just strips. He like them hanging out of his mouth like above but sometimes the whole thing is in there. This freaked out some teachers initially, but then everyone got used to it when he never choked! Just so you know, he has millions of them and the "grey ones" are preferred. I even got a call once because the school couldn't find any of the grey ones and the 20 "clear ones" were being dissed by him. I went through all of his pockets until I found one and brought it to school. So he does play favorites....
I remember walking through his school at the beginning of a new school year. I'm guessing it was before 2nd or 3rd grade. Another child and his mother were passing us in the hallway. We were there the week before school was in session so Daniel could see his new classroom and teacher. The child passing us said, "I know him, that's the kid that eats dirt." He wasn't trying to be mean, I could tell, it was a statement of fact, but it still broke my heart. You don't picture your child as the one who eats dirt at recess. As part of our Team Daniel at school we had many many discussions about how to stop this. For a long time he got a mini candy cane before each recess. It gave him something hard to munch on to give him some of the sensory input he was looking for. I don't think it helped completely, but it did keep him away from the dirt for part of the time. Of course people tried to watch him and prevent it from happening, but honestly, if he wants to, he'll find a way!
In the winter it is snow. He eats snow CONSTANTLY. Still does. Even this past year one of his 6th grade friends talked to their teacher out of concern for Daniel because he was licking the swing set pole. The child feared that Daniel's tongue would stick to the pole. Bless that girl! I think we reasonably warned him about what could happen if that continued and to my knowledge, it hasn't. He just went back to wiping snow off with is mitten and eating off of that. I can't tell you the hundreds and hundreds of times parents or strangers would say, "you know, he's eating snow!" (egads!) and I'd pretend like I didn't realize it and shoo him away from it. Or they'd say something like "you should tell him he can't do that". (ok lady because the one millionth and first time I tell him will DO THE TRICK!) I am exhausted from it so I fully admit that sometimes I just ignore it! Where's one of those parenting awards now??? I do remind him on occasion hoping that the light bulb will go off and he'll stop. I know I know. All kids do that. But not when they are 12! Usually when you are much younger.
And yes, the worst of all, when he was learning to use the toilet (just before he turned 6) there were many many times that I found him covered in poop and eating it. It was the single worst experience I've had raising a child with autism. Toilet training is more than a blog it is at least a chapter in a book, if not a whole book! But for now, I can't tell you how angry it made me. Looking back on it, anger seems like the wrong emotion to have, but it's what I felt. I don't know if it was necessarily at HIM or if it was at the situation that I had to deal with, but it was awful and horrific. For years after that, it seemed that every January I'd get a call from school because he'd come back from the bathroom with poo smeared around his mouth. That would last a few weeks then go away. I'm happy to say it hasn't happened in the past two years (this is me knocking on wood) The school handled it with such compassion and dignity for Daniel, I have to say that. I would cry every time. Partially out of frustration. The only reason why I am writing about this is (back to my struggle of how much to share) because when people see Daniel now, they don't think we've had to deal with things like this. So I am telling you we have. It is somehow hard for people to believe that someone as "high functioning" as him would do this. But he did. And I know he couldn't help it. And I know it really upset me. REALLY UPSET me. I hope that some day he understands that the only reason I share this is for other parents in the same situation to know that this to shall pass. It can be difficult. But you keep trying new strategies and it will get better. Write social stories, get chewies, follow other strategies other parents suggest. They'll grow and mature, and then you'll have something else to deal with. Like puberty, or driving, or adulthood. It's always something!
Tuesday, June 9, 2009
In preparation, yesterday morning I asked Daniel if he wanted to come with me to pick up the boys or if he wanted to stay home for a bit on him own. As I suspected he jumped at the chance to stay home and the fact that it fell exactly during his self appointed "lunch time" worked well. I thought I could make his lunch for him and leave him to play his computer games while I took my turn with car pool duty.
During the morning we talked, again, about what the "rules" are when he is alone. Together we made a list. For Daniel, if it is written down, it is the law. He loves a list. Social Stories have always worked really well for him. They help him understand the expectations from us and what might occur in a new situation. We have tons of old social stories filed away for all sorts of situations such as "Going to the Doctor", "Going to the Dentist", and my favorite "Flying on an Airplane." For him, it takes away a lot of the anxiety of not knowing what will happen and what is expected of him. When he was little he used to climb on bookshelves in his bedroom that were/are very tipsy. I must have told him a million times not to climb onto those book shelves but it wasn't until I took a piece of copy paper and drew a large circle with a line through it and wrote "do not climb" and taped it on the top. The international symbol for "don't you dare go there!"
This immediately made him stop. After all that time of talking and talking it's all it took. It is still there today by the way. Years later.
So when it comes to learning something new, writing it down on paper is the way to go. Who said I'm a slow learner?? So this is what we came up with for our rules. The funny thing is, as I was writing it just kept expanding. I kept realizing how Daniel would interpret things and had to explain it or give explanations. So here it is, Daniel's Rules:
1. Do NOT answer the door. (this is easy because every time I get in the shower I say this!)
2. Keep the doors locked.
3. Stay inside (then I had to add) UNLESS there is an EMERGENCY. (I was picturing a fire and Daniel sitting in the house saying "I have to stay inside" and he would, if that was the rule, believe me.)
4. An EMERGENCY IS: ( I know, funny, but I have to explain this, just so he knows that it is not an emergency if he can't open a box of Ding Dongs) an EMERGENCY is:
5. If a fire started, take the phone outside with you and call 911.
6. Only answer the phone if mom or dad call. When the phone rings look at the caller i.d.
if it says 111-1111 (dad's number) (sorry not giving out the cells to the internet!)or 222-2222 (mom's number)
7. when finished with a phone call press the red button after saying "goodbye". (important or it will stay off the hook!)
8. If I need mom I:
Of course, when we practiced number 8 I was sitting right next to him and my blasted cell phone didn't pick up! GRRR. So I guess I need to add directions for leaving a message, but you get the idea. For Daniel, you need to be specific like "press the green button before dialing". While setting up something like this I have to think through ever single step. Writing it out is SO helpful for him. It has helped that he is hyperlexic and could read from the time he was 3 (that we know of) The funny thing about that link is every single thing listed is Daniel to a "T".
Yesterday we role played calling 911 several times. I tried to throw different questions at him that the emergency personnel might ask. He did well. When I asked him the address of the "fire" he said the numbers but not the street, I asked what street? and he immediately said the street. I was very proud of him. After several rounds of practicing I decided to let him stay while I picked up the boys. After pickup and dropping off two of the children, I called home. It had been about 20 minutes by then. Daniel answered, "Hello, Daniel here!" Which made me giggle. We went back and forth and I told him I'd be home in about 5 minutes. He was THRILLED. So proud of himself and so was I.
I think it is so important to teach kids these skills. The number one skill people need for adulthood is independence. Without that how will he be able to achieve anything? It is a lot of work. But the rewards far outweigh it. He was on cloud nine with his achievement yesterday. We'll keep working on the rules and role playing them, until it is all second nature. He asked me where he should keep his rules and we found a place. I'll have two more opportunities this week for a short 20 - 30 minute test. Two more opportunities to let Daniel's self advocating play out for him. Two more opportunities to build his self esteem. It's not just about not wanting to drag him out of the house. It is so so much more!
Sunday, June 7, 2009
Saturday, June 6, 2009
The first is from my "friend" who writes Autism in a Word. She has a beautiful daughter Rhema who touches my heart every time I read her mom's blog. This post makes my heart soar! Sometimes we, as parents of children with autism, want the simplest things for our children, and sometimes those simple things are the most important. http://rhemashope.wordpress.com/2009/06/03/theres-a-velvet-leotard-hanging-in-my-laundry-room/
The second is from another blogger friend. I don't know any of these ladies on a face to face level, but feel I've known them all a long long time. We all have an understanding of each other that you simply can't have unless you've lived our lives. This blog is actually about something that happened to someone ELSE she knows, but it is very powerful. I read it to Todd this morning and the rage between the two of us was palpable. It just shows how much further we have to go with education. I think it's important to know what still goes on and how the ignorance of one person can truly wound a person's soul. If more people know about it, maybe it won't happen in another situation. It's also about parents taking a terrible situation and turning it into an opportunity to educate and is reminiscent of "Paying it Forward" to spread the word. I suggest clicking on the link in this blog and reading the full story. http://teenautism.com/2009/06/02/the-tie-dye-project/http://teenautism.com/2009/06/02/the-tie-dye-project/
The last is a story from John Elder Robison's blog. If you don't know who he is, he wrote the book "Look me in the eye". His brother wrote "Running with Scissors" I found his blog because he is linked to the above blog. That's how this crazy blogging world works. Then you find someone and if you like them, you start reading theirs. This story is about his son, whom I can only assume has Asperger's as he does. I haven't read enough of him to know this for sure, so if I jumped to a conclusion, I apologize. This is a classic story of something that can so easily happen to those with the special interests of someone with Asperger's and the misunderstandings that happen all the time. Education. It is so important. So is patience, understanding and tolerance. http://jerobison.blogspot.com/2009/05/cubbys-day-in-court.html
I hope you took the time to enjoy my chosen blogs. I picked each of them for specific reasons. They all probably have more readers than I but as many people as possible should be reading these stories. They are very important.
Thursday, June 4, 2009
Sometimes with Daniel's group therapy they get homework. The week before Memorial Day they got a homework sheet about being afraid. I talked about this in my Belle Tire Cares post. I thought that was funny, not funny ha ha, but funny in that strange 'look how the universe works' way. This past Monday we turned in his homework and this is what it looked like:
I don't know if you can see it. But the top picture is the bee he drew which is too cute for words. The bottom is the gazebo we built as the way to solve our problem. The interesting thing is when I took out this homework to work on, he got very upset, hands over ears yelling no no no. I said "Daniel we'll just talk about bees" (I knew he was afraid I'd bring up Belle Tire) then he yelled, " I don't want to talk about the Belle Tire guy". Excuse me, but that is HUGE. That is the first time those words have ever crossed his lips. Granted he was panicked, but he a. explained why and b. said the words Belle Tire guy out LOUD. I considered that a HUGE step forward. I had finally convinced him we were only talking about bees (hard to do when someone is plugging their ears the whole time) and finished the homework. I stayed true to my word, only talking about bees, which is VERY important, so they trust you. If you break that trust, forget it. It would take so long to build it up again.
At therapy, I pulled her aside to tell her what happened and, GET THIS, she had a kid on the spectrum before who's greatest fear was Belle Tire! I couldn't believe it. She has actually dealt with this before! After I explained it, they went into the group. Daniel shared his bee page during group. No one else did their homework except us (typical) so they all talked for a bit about if they are also afraid of bees. Then that tricky therapist said, "does anyone else have a fear of something else? Maybe something you might see on T.V.?" She said that Daniel's hands flew up to his ears and he said he didn't want to talk about it and excused himself to go to the restroom! I think that is HUGE progress. Maybe I'm easy? or delusional? but I actually think we are getting somewhere. Baby steps. He seems to be dealing with it a tiny bit better. He's still panicked, plugging his ears and refusing to come into the room if the TV is on an unapproved channel, but I'll take what I can get and keep pushing along, slowly but surely. But I feel like the surface has been cracked. Just what I needed. Something to keep me pushing through. Ahhhh progress.