Friday, May 29, 2009

The Secret Lives of Bees

Spring, the refreshing renewal of trees, grasses and flowers. The joy of watching everything turn green after a long cold grey winter. We look forward to it in our house as soon as fall is fading into winter. Especially Daniel and I. We like summer. And while most people like summer, I like summer so much because I find almost no redeeming quality about winter. So when the weather warms up, Daniel starts to spend more and more time outside. He has free reign about going in and out. He's never been "a runner". He knows his boundaries and sticks too them. For this we are extremely blessed. He won't leave our property. But goes in and out of the house sitting on the porch singing, or on the trampoline or swing set. It's very relaxing. Until IT starts. IT is the bees and mosquitoes. . . and boy are they back in town.

I find it amazing how my selective memory seems to work. I can't remember if we have this problem every year and slowly we get him more comfortable with being outside with the little creatures. Or if it is a particularly bad year this year. On Memorial Day is was a gorgeous day here in E.L. and we spent most of the day out on our deck. Our deck is easily 10 degrees hotter than the air temp in the front of our house and on this day it was cooler, so the deck felt perfect. Todd's parents came over and we sat outside talking. The boys were going to eat lunch outside. But as soon as Daniel went out with his food. The bees started flying around. Bees are right up there with his other greatest fear. The Belle Tire guy which I talked about here and here. So the bees are back and with it Daniel's anxiety's have been raised one hundred fold. He was so panicked he spent that whole beautiful day inside. It broke my heart. I know how badly he wanted to come outside but he was just too scared.

We have talked many many times about putting a screened porch on the back of our house. It would solve many problems. For one, our deck gets so hot, once mid June comes you can barely be on it during the day. At night you can't because the mosquitoes get so bad. So the screened porch would really solve both of these problems. My friend and neighbor is having one built as I write this. I am having major porch envy. Last weekend I was at another friends for a BBQ and they have one too. Envy. It just isn't an option for us right now. We don't have the money and with other things looming (like a new roof) it's not a good time. How do we help him deal with his fear of bees? If anyone has any thoughts I'd love to hear from you.

I have tried to find out what it is that scares him, because he's never been stung. We had a talk about it, but he gets so upset at the mention of "bees" he goes right back to that place of panic. I found this segment in the book "Sensory Perceptual Issues in Autism and Aspergers". It explains that "perceptual thinkers can experience thought as a reality. It means that when they think about something, they relive it visually, auditorially, etc and emotionally." (ONeill 1999). This is why when we bring up, say, "Belle Tire" he covers his ears and starts screaming because he literally relives the scary moment over and over. It's like a nightmare version of "Ground Hog Day". Same with the night I asked him about why he is afraid of bees. Hands over hears, red blotchy face yelling and crying. I tried to calm him but I want to get to the bottom of why it upsets him. Is it the buzzing? Is it a fear of being stung? Is it the flying around unpredictably? He did get out that it was the buzzing and flying around. I don't like those really loud buzzers either and from a kid who when he was 4 and our magnolia tree was FULL of butterflies, literally hundreds of them all at one time, that "the butterfly wings are too loud" when I asked him to come look with me. Yup. butterfly wings are too loud. Now I think this shows the intensity in which he deals with these sensory issues.

My distress of poor Daniel taking shelter in our house after waiting months for warm weather sent me out for an option instead of adding a $10,000 + addition onto our house. As you know I love a good research project. The next day I made a fairly impulsive buy. Here it is.

Daniel is SO excited about this gazebo as is everyone else. He says he can now "eat on the deck safe and sound, away from bees and mosquitoes". We'll still work on helping him manage his fear, but in the mean time, I think we have found a temporary solution to give us some more quality family time. By the way. This gazebo was purchased from Target, on sale for $193.00. And, no, I'm not getting any compensation for pointing this out (I wish), I'm just trying to pass along helpful information. While I don't generally enjoy dropping $200 I think it was a good deal. In my opinion it's attractive (ours doesn't look quite as good as the Target add with their fancy furniture etc. but it is useful, and not so drastic as adding onto our house. All in all it's a good solution.

Wednesday, May 27, 2009

Baby Steps

I believe I recently mentioned that for parents of kids with special needs, we do endure some very hard times. But the highs, even over things that seem small can be so invigorating and renewing. To me, it seems as soon as a frustration is running my life a glimmer happens to give me the boost I need to keep going. I am always, ALWAYS amazed when this happens. Partially because it always does. Some people would say it's God lifting me up, some would say the universe, some would say it's a coincidence. I don't know what it is for sure, but there is one thing that is certain. I'm glad it happens. Even beyond that, I'm thankful it happens.

That is probably way too much of a build up for what happened yesterday, but I'll try to explain the importance of it as well as I can. It's one of those things that you continue to bring your child to therapy and they work work work, and you get to a point where you think, "why am I paying this money week after week?" He works on skills in speech at school too, over and over. Then one day, in every day life, not a controlled therapy session, it, unprompted, spills out of his mouth. I LOVE WHEN THAT HAPPENS.

Yesterday, I picked Daniel up from school, as usual. I told him I didn't need to go to the bus stop because Zachary had baseball practice after school. We came inside together and he was very excited about some items he "bought" at school. Over the last few weeks they have had jobs at school. Daniel has been given jobs that he can handle easily enough. The kid loves a job. Why not? It gives him purpose. It makes him feel good about himself. His jobs have been 1. being in charge of the computer, shutting it down for the night, cleaning it etc. 2. washing down the tables in the classroom, and 3. some sort of trash duty that I couldn't quite get the specifics out of him. The kids have been getting paid in "Toad" bucks (their class is the TOADS, I don't remember what that stands for but it has something to do with totally awesome diverse students) Taxes are taken out of their earnings etc. then get to spend their money in TOADS town. They have all been working on goods to sell in toads town. Yesterday was the first shopping day. Daniel came home with an array of interesting items that will end up sitting on his dresser getting dusty, but hey, he was excited and carefully showed me each item and told me who made it. It was worth it just for that interaction!

Later, I decided that cooking was out of the question and we jumped into the car to go to Olga's Kitchen. One of our favorite spots. It's a restaurant that we can actually all find something we like to eat, even my food allergy ridden son Zachary, and everyone is happy. Hurray. When we got in the car, Daniel and Zachary settled into their spots. It was really the first time they'd seen each other since the morning and instead of Daniel's usual scripted greeting of "Hi Zachary, how was your day?" that his group therapy gave him(and he says to every person he sees, exactly the same way) he said, "How was baseball today Zachary?" I almost came out of my seat. It wasn't scripted, it sounded so completely natural and APPROPRIATE. Zachary wasn't even wearing his baseball gear anymore. Daniel had remembered that I said he had practice and asked Zachary about it at the first opportunity. After the answer, I praised Daniel all over the place about what a great question that was and how proud I was. It was truly exciting. Maybe it doesn't sound like a lot, but it is one of the basics of conversation that he has been working on for a long long time. To me, it was astounding.

Not two minutes later we were driving by a local jewelry store and Daniel said, "Dad, a few years ago we were in that store together and I was singing Beauty and the Beast under the giant chandelier". What? Daniel's sense of time is terrible. Everything to him was "yesterday". I know the way that he remembers information is so very different from ours that I truly believe things seem like "yesterday" to him all the time. I have read many many articles on this topic and they all say something different. Probably because all of the children they were studying are different. It seems that my own "research" shows that DANIEL, not ALL children with autism, but Daniel remembers episodes very very clearly but he can't determine when they happened. In this instance, he was correct. Apparently, the time he was talking about was a present for my 40th birthday which, unfortunately, was already nearly 2 years ago. Was it a coincidence? I don't think so. I've never heard him lead with "a few years ago". This is something that is worked on in his speech therapies, not regularly or directly but they keep coming back to it. For instance on Monday they might talk about what happened on the weekend. While this seems like a standard thing to do, it is to help him recall what happened that past weekend. Not a weekend six years ago when he went to Disney World. While that information can be retrieved and spouted off at you in amazing detail he, normally, can't give you any indication of where that is in time. My heart leaped again and I was still basking in the glow of the baseball comment!

I don't know what you, my dear readers, will think. Are you thinking, "wow this woman is really searching for something positive?" I hope not. I hope you understand, as I do, that to get to your goal, to improve and build on a skill you have to go a little at a time. Baby steps. Slow but sure. Hopefully on this slow but sure journey you will take the time to be thankful for the little things, understand their worth, and take in the scenery, because it really can be a beautiful thing.

Friday, May 22, 2009

Two breakfasts and some water please

I have noticed that my child is going on some major eating binges lately. He is 12 1/2 and a big kid. Is he growing? Is he really hungry or just compulsively eating? Does he just feel compelled to "finish" all the food? Or is it a combination of all of the above?

Food is a contentious issue for those of us who deal with the autism spectrum every day. It is more of a problem here because of all our our food allergies. Because of all of these issues I have become more and more drawn to the kitchen and find that cooking can be a creative outlet. We are constantly trying to get Daniel to try more foods. Sometimes, more, is enough, but I would like them to be healthier too. He seems to be (finally!) understanding the difference of the healthy and non or I guess un. We recently went to a health and wellness night at Zachary's school. We received a food target (as opposed to the pyramid) and it has been very helpful to him. It is by Chris Johnson, who came to speak at our school. I think that, visually, it makes a lot more sense than the pyramid and to his autistic eye, he wants a bulls eye. Perfect.

Daniel's willingness to try more foods lately is a good start. It may only be one bite, but we have to start somewhere don't we? And one bite of a grilled chicken is better than zero. We have found that reciting passages from Dr. Seuss's "Green Eggs and Ham" is helpful. For instance, Todd offers Daniel a bite of his chicken. Daniel says, "No, I do not like chicken". So Todd starts saying, "I will not eat it in a boat, I will not eat it with a goat. . ." Daniel starts repeating after, until he pops a bite into his mouth and no matter what says, "hey, I like chicken, I do!!!!!!!!!. . . I would eat it in a car and on a plane. . ." It, as everything seems to, grows old. But it WORKS and that is the most important thing.

This food target has allowed me to show him that chocolate fudge poptarts are not in the bulls eye and in fact are very bad. It is ok on occasion, but twice a day for snack may be a bit much. When he looked at me with his sweet face and said "they aren't good for me?" with such authenticity and true sadness, I could just melt. But, no, they are not. Now that he is 12 1/2 I believe his daily calorie need is rising fast. I don't want it to be filled with empty calories. I have watched my father struggle with his weight (this is being extremely kind by the way) and I don't want Daniel to get to a point that he has to lose weight, because I know that would be very difficult.

This leads me to today. His school was having a "parent appreciation" breakfast. I was asked to go as I have been a part of the parent council all year. I'm still not really sure how that happened and think that some very smart president somehow eased me into that with out me even realizing it. I know that seems impossible, and you may be thinking how can that happen without your realizing it? But it did. Maybe I was even too busy to realize it was happening and then there I found myself on the council. Either that or my high incidence of migraines really has rendered me completely helpless and hopeless.

Last night I asked Daniel if we could go to the school early for this breakfast. I feared that the schedule change would be too much for him. I, in passing, said he could just come with me and "have a muffin" if he so desired. I had no idea what sort of "carrot" that muffin would be. This morning the very first thing out of his mouth was "I get to have two breakfasts today". hmmm. who knew? He ate his breakfast and broke his schedule without me saying a word and did everything early so he would be ready to leave for school 30 minutes earlier than usual. We walked to the school together, went into the library and he immediately took a blueberry muffin (?) This is an odd choice for him, but I believe it was because the night before I had said "have a muffin". Good grief why didn't I say have some fruit?

So he had his muffin and orange juice. (also an odd choice, he always always drinks water I have zero hope of him ever having milk) then I saw him working his way back up to the table, only to grab a chocolate donut. I told him he could have only ONE. So he scurried off and ate that. Then, as I was chatting, I saw him slinking back to the table again. Two teachers were there and I could see he was headed back to the donuts. They were, of course, encouraging this. As I yelled NO MORE DONUTS. His plan was foiled. But how could he still be hungry? He had 3 pieces of whole wheat toast (plain no butter) and three pieces of bacon and water. Same as every day for the past 5 years? I'm realizing this may not be enough. . . as he walks by me with a BAGEL? WHAT? He's never had a bagel in his life. Plain of course, but he started to eat a giant bagel. Half way through he was slowing down and I told him if he's full he can be done. I was happy that he actually stopped, because I do think sometimes he feels compelled to finish. No matter what. This is not from us because we have never been "clean your plate" people as I feel it encourages eating when you aren't hungry and encourages obesity. Yes, I'm a bit obsessed with this issue.

The good thing is that he is a water drinker. I am very happy that he has chosen water as his drink. I have been asked by other parents how I have avoided him drinking soda. It is easy. It isn't an option and we don't have it in the house. You can't drink what isn't here. Parents usually then say "oh I have to have my Coke". Enough said? The only time he gets a soft drink is when we are in a restaurant and most of the time he doesn't even drink it. It just is a "treat". I believe some kids his age are starting on coffee which is crazy to me partially because I can't imagine someone talking incessantly about Teletubbies while holding a latte. We live in a college town with a coffee house every other store front, so I understand the lure. He's never been a juice guy, but every so often he'll have an apple juice "Juicy Juice" juice box.
My husband recently "won" a silent auction item for me. He bought himself a signed Tom Izzo basketball and for me, a margaritaville "basket". Which is just entirely too fitting for each of us. In it were these two adorable glasses. Which Daniel has taken as his own. Yup. After school he's been filling it up with water and taking it to the computer.
I guess it's better than it's true intention. . . but it is funny watching him walk around with a margarita glass full of water!

Wednesday, May 20, 2009

Spring Concert Success!

Last night Daniel had his spring band concert. This is such a huge thing for him. I am AMAZED at what he produces. He wants band so very much he really pulls it together and does things he can't normally do on a regular day. What I mean is, he got there at 5:50 p.m. and got on stage with the 6th grade band for practice. We had all of his music, so I thought. Come to find out they needed their book too. NO ONE TOLD ME THAT? And Daniel either won't communicate that kind of thing or he's in another world when they say it and he has no idea. I think it's the later. He didn't freak out and his "best friend Jonas" (as he says!) jumped right in and said he could use his because he knew it by heart. They both play in bass clef because Jonas is trombone and Daniel plays the baritone. Daniel took this very calmly. If it was during school he'd be very upset and insist someone go get his book.

They practiced then filed off stage and sat through and entire 5th grade practice and then the 5th graders started the concert. He probably sat for an hour, quietly, appropriately, with his baritone and music. I had taken a seat by where I thought they'd be sitting that whole time, but the band teacher changed it from last time! I have recently met a principal from the other 5/6 school in our district and he was hanging out by the kids to keep them quiet. I gave him a heads up about Daniel's autism and asked him to give me a signal if he needed help. Plus I thought it might be a good idea if Daniel was fidgeting then this principal would know to maybe handle things a bit differently. I don't know this principal very well, but from what I've seen I've been VERY impressed! It ended up being totally unnecessary, but I completely live on the idea that it is better to be over prepared and it made me feel better!

As it was the 6th graders turn to perform I secretly wondered if he'd need help carrying all of that stuff onto the stage and getting settled. I was looking for him in the audience only to look up on stage and see him getting into his seat before the other grade was even off the stage! He was so excited!! On the way to the concert he kept saying, "when I'm on stage I must be silent!" His way of reminding himself to be quiet. (because for those of you without kids on the spectrum there is a clear difference from being quiet and being silent. Quiet means whispering is ok, silent means silent!) He constantly talks to himself, usually fairly quietly, but on stage it's a no no and he DOES IT. I find it amazing. It also let's me know he CAN do it and I have hopes that someday it will carry over to other situations.

They performed beautifully. I am so very thankful for the things people do to help make band possible for him. It is a wonderful social connection AND it really boosts his self image. Both such important things for all kids, but I think even more so for Daniel. Here are a few pics of my proud baritone player who, by the way, at age 12 is wearing his fathers shoes and belt!

Great Job Daniel. We are so very proud of you!

Tuesday, May 19, 2009

Belle Tire Cares

Yesterday I had a comment on my blog from the Social Media Director of Belle Tire. My reaction to this was immediate laughter. I love the fact that they not only found my little blog, but cared enough to leave the following comment:

Hi Michelle,

I've been reading your blog for a while now. (I blog-search Belle Tire on a daily basis.)

Kate was right, Belle Tire's are only located in Michigan and Northern Ohio.

We're so sorry to read of your difficulties with Tire Man. I know that it must be stressful and we hate to have any part of it.

Let us know if there is anything we can do to help.

Kari McLeod
Social Media Coordinator, Belle Tire Distributors Inc.


A few weeks ago I googled "belle tire mascot" to see where I would show up on the google list. The answer is 5th. 5th! My husband had suggested that someone from Belle Tire would probably find the blog based on that to make sure I wasn't infringing on the copy write of their logo or something. What I particularly loved about Kari's comment is that they have been "following my blog for a while" which I had sort of already figured out from my traffic feed. At least I thought that was a possibility. I wondered if it was just to make sure I wasn't bashing them, and I have come to find out that "Belle Tire cares". To top it ALL off the Belle Tire logo is now prominently displayed as a "follower" of my blog! Good thing Daniel doesn't read my blog because if he had, he'd never come back to it with that logo there!

I love how the universe works because on the same day as this comment was left I brought Daniel to his usual therapy on Monday evenings. Oddly enough, the theme was, "what we are afraid of" Ok, that's just weird. Get this, his homework assignment is to "draw a picture of what you are afraid of". Please understand I said nothing to his therapist about this. Partially because last time I brought it up she wanted to do "private sessions" to focus on helping him get over his "Tire Man" fear. I didn't feel up to paying $50 a session and taking the time to get him there once a week. Plus I was pretty sure that after the first session he'd never want to see her again EVER because he'd be so pissed off. So I had put it on hold. For whatever reason I am now feeling it's time and I thought I'd try to tackle this myself. I am not a therapist of course but I sort of "play one in real life".

So we are sitting outside of the therapist's office last night and I was looking at the homework, which is due in two weeks, because of Memorial Day, and read the assignment. I purposefully said in front of the therapist, "oh look Daniel you need to draw a picture of what you are most afraid of".

Daniel says- "I'm afraid of thunder and lightening"

me- "no you are not" (he's picking something he isn't afraid of so he doesn't freak himself out.)

Daniel- (gives in slightly and says) "I'm afraid of bees."

me- "You're right Daniel, you are afraid of bees. It would be a great idea to draw a picture of a bee, then you could explain why you are afraid of them and what you do to get around that. But I'm thinking of something you are even MORE afraid of."

(guns? mass murderers? snakes? Nope, a smiling TIRE!)

Daniel- looks me in the eye and I'm thinking Belle Tire, Belle Tire (I swear he can read my thoughts sometimes) and his eyes get huge and round, hands fly up to his ears and he starts SCREAMING NO NO NO! DON'T SAY IT! (all in front of the therapist)

Therapist- "It's ok Daniel we won't talk about it, go to your happy place, think of something happy."

Daniel- (nervously starts singing) "Sing. . .. . sing a song, make it simple, to last your whole life long. . . . Don't worry that it's not good enough for anyone else to hear. . . just sing, sing a song . . .. (anyone?? Sesame street! That's his go to his happy place song that turns him around!)

Me- heavily praising him for turning himself around so quickly!!! Great job!! Singing is a strategy we've worked on to help him pull himself out of a downward spiral when he feels it coming and he DID IT ON HIS OWN! All part of the problem.

My reactions to all of this are so mixed. I find it fascinating that I had decided to start working on this and all of the stars have come together, seemingly, without me pushing them that way. It must be time. Oh how much easier some things in our lives would be without him fearing seeing that Tire man on tv or on a billboard. How silly to us, not to him, that this guy is so terrifying and standing in his way. How funny and sweet that the company is aware of it and would like to help in some way.

I'm assuming that changing the logo that they've had for what 20 or 30 years is not an option? LOL. I posted this on facebook and got many suggestions on how they could help. Some being jokes, of course. Here are some of the comments:

"I just hope they don't send you a big box of Belle Tire logo stuff!"

"The Belle Tire Man is VERY creepy. I do not react as strongly as Daniel, but that thing is definitely a boggart."

"A possible donor for the sensory room?"

This last one needs explaining. Two of our K - 4 elementary buildings are putting in "sensory rooms" for a place for children with sensory difficulties to escape to during the day. It can be a place to relax. We are hoping to add equipment that would be calming and help them get their neurological systems back in order. My son Zachary and the cub scout troops put efforts in the whole year to get this going. They raised over $800.00 to donate to the school to help this dream become a reality. People donated a lot of time and effort. We also used it as a way to teach the cub scouts about autism with our theme being "How to be a friend to someone with autism". It was a fantastic idea! How wonderful for the boys to give something direct to their school. A friend of mine and I were laughing about the donor idea saying, "wouldn't it just be the cherry on the sundae if Belle Tire would donate money for the sensory room in behalf of Daniel?? Now that would be full circle.

While I do laugh at this whole crazy scenario it is partially out of the feeling that comes over me sometimes of "how did I get here?" Could I ever have imagined that my number one job at one point would be trying to rid the trauma of a logo? That I would spend years helping Daniel master the skills of bike riding? That I would constantly have to try to put myself in his shoes to see what he sees to try to help him move to the next level? That part of my "job" would be committing myself to families and be their representative in our school district and beyond (more on this later)?

Friday, May 15, 2009

Boggart Therapy Part I

Many blogs ago I was talking about Daniel's horrible fear of (cue thunder and lightning) THE (evil) BELLE TIRE GUY! The cute little smiling guy who sends my son into complete orbit. Mama Mara, who I've mentioned often, suggested a "boggart therapy". According to Mama Mara, "A boggart if you are not a Harry Potter freak, is a magical creature that can morph into the thing you fear most. To combat a boggart, wizards use a "Ridiculoso" spell which morphs the scary creature into something comical."
She used it with her son when he had a fear of the KKK. I don't know where he's been hanging out, but none of these fears can be explained.

Because our kids are so visual they get this image in their head and can't get it out. It's like it's in 3D right in front of them. So she suggested changing that visual image. She would draw pics of KKK guys and then show what's under the robes, ie a pointy cone head, ladies underwear, whatever. Trying to make the images comical, or maybe conical as in their heads! She suggested I use this for Daniel. I think it is a FABULOUS idea. You are very creative mama. BUT I've been holding back. Why? Because I know it's going to be a helluva lot of work, that's why. So as usual I try to gear myself up until I'm ready.

Enter the next problem, which is vacation. The last several vacations we have gone on have been to my aunt's house in Florida and so we just don't need to go out to eat much. This fear of the Belle Tire guy keeps us out of many many restaurants. If there are tv's in a restaurant, even if they are muted they keep him from entering. I get a lot of kind souls suggesting we just start trying to bring him into restaurants with tvs slowly but surely. While this is well intentioned advice, I say if that's what needs to be done YOU do it! lol. This can only be suggested by someone who has never seen his reaction to tv's anywhere. Hands fly up to ears, stress begins then escalates quickly to panic and yelling to cover up any POSSIBLE chance that the Belle Tire guy will appear and give his patented throaty "Belle tire". To hear the voice watch this video, that is if you can keep awake through the 1 minute of car alignment talk...

No it isn't happening. Right now trying to get him anywhere near a restaurant with tv's would be like saying "hey lady get naked and jump into the deep abyss, don't worry it's filled with snakes and crocodiles, you'll be fine".

I say vacation is the motivator, because we are going on one end of July. We always go "up north" sometimes for weeks, but again we are at a house, with a kitchen, and a Grandma who lovingly cooks or a Grandpa who grills! If we go out, we order in. It works most of the time, but now we are going to visit our family on the east coast. We'll be staying in hotels for over a week and driving through Canada to get there. We will pack coolers of food and get hotels with refrigerators and microwaves, but there WILL be times we'll need to eat out and I don't want to be stuck in a situation of starving kids and only restaurants with a tv in them with Daniel screaming on the curb. Nope. Don't want to go there! In other words, no time like the present to start this process.

This brings me to the fact that I drew a Belle Tire guy the other night. Here's my drawing:

My thought was I'd draw him as is then Daniel and I could add changes to him to make him silly. High heels, a clown hat, a big giant nose, silly glasses, whatever. I got as far as drawing him and got distracted and left the drawing in the family room. Daniel walked in to talk to me and I totally forgot about my drawing, which was sitting on the table right next to me. So in he walks and I swear it looked like he ran into a glass door! His hands shot to his ears, he fell backwards laying on the ground screaming "he can't talk he can't talk!" Which in Daniel speak means he doesn't want him to talk. I have to admit, I was almost laughing, which just sounds really really mean, but it is such an extreme reaction, it struck me funny. I was keeping a straight face, but was trying to get his attention. I was careful not to lean over him for fear he'd kick me in the gut, but was yelling over him, "IT'S JUST A DRAWING IT WON'T TALK!". He eventually heard me and started to calm down. I think we've determined it is the voice that freaks him out?? So I don't think I'll be changing that drawing any time soon?? My Plan B is now to maybe get him to look at my drawing and KNOW it won't say anything. Then we'll start making him silly. For now, I'm taking a few days off and calling it session I of "scaring the living daylights out of my child" complete.

Someone please tell me there are no Belle Tire's on the east coast. Please.

Thursday, May 14, 2009

In My Dreams

In my family there is always a lot of talk about dreams. My Aunt often recounts her dreams step by step in her daily email to all of us. I have dreams that help me figure out what is puzzling me or help me find something that is lost. All in all I think dreams are a fascinating way into people's heads.

Every night that Daniel is going to bed we say the same thing.

me- Daniel, I love you so so so so so so so so so so much.

Daniel- how many so's do you have mom??

me- many many many many (etc) so's. I love you sweetheart

Daniel- I love you too mom.

me- Good night Daniel

Daniel- Good night mom, tonight I'll dream about . . .

fill in the blank. It changes. I always wonder what are in Daniel's dreams. Does he organize his DVD's just so? Does he make sure his dresser items are in their exact place? Does he have flawless conversations with people with no struggle? Does he ride his bike freely whenever he wants? Does he really dream about what he says he's going to?

Yesterday would have been my beloved Uncles birthday. For those of you who read this blog often I had several blogs devoted to him. It was the first May 13th ever without him here in my life. (ok I'm crying again) Last night I mentioned to Daniel that if Uncle Tom was still alive it would be his birthday today. I thought the wording on that may confuse him, and it did. He replied, "Uncle Tom's alive?" I said, "no he isn't Daniel but when he was alive May 13 was his birthday". He looked me right in the eye. Sometimes the moments of clarity he delivers take my breath away. This was one of those times. He said, "Uncle Tom IS alive, in my dreams." Amen Daniel. We miss you Uncle Tom. It is also the anniversary of my mother's death an unbelievable 16 years ago. I was about to say she has missed so much, but I really think she hasn't. That she has been by my side the whole time, seeing all of the wonderful times, and the hard times. It is all of us who have missed out on these past years.

Sunday, May 10, 2009

Happy Mother's Day

More. That is the word that keeps coming to mind. I've been thinking about what it means to be the mother of a special needs child. More. I feel like I have perspective because I am simultaneously parenting two boys and while we are a family, the parenting of these boys often seems to be running on parallel planes. We are so often together as a family, but it's different. It's hard to explain.

The other day I was talking to a friend of mine, who recently learned the diagnosis of her beautiful child. It is not on the autism spectrum, but a life long life changing diagnosis. She had just had a walker delivered to her house from a PT to help her child. She said to me,"that's not supposed to be in my house, it should be in someone elses". That keeps running through my head. Sometimes it's hard for us to believe that these are the things we need to deal with on a daily basis. A feeling of how did I get here? Having a child with special needs can at times make you need to dig down deep to find more strength. When I'm talking to teams of professionals who have gathered to talk about my child, sometimes it will overwhelm me to think that all of these people are gathered to talk about my "little" boy. The boy who has had obstacles to overcome since the day he was born. It could be much much worse, this I know, but sometimes I need more strength. The decisions that need to be made for such a simple thing as riding your bike around the block take more planning and more thought than with my other child. You worry more, you plan more, you cry more and the joys, when they come are stronger and more overwhelming. This is not saying that he is loved more. But it is different. My sweet sweet Zachary is such a love, he is just taking a different path than his brother.

I am ALWAYS told, "you have so much patience, much more than I could have". I've said it a million times. I was probably one of the least patient people around. You are not born with a pot of patience to draw from that is one size, with some people having more than others. It is constantly refilled and rejuvenated. I remember the exact moment that I realized that something needed to change within ME. Not within my child who was screaming and hitting and having a complete breakdown. Daniel was maybe 4 1/2 and Zachary 1 1/2. Daniel and I were literally rolling around on the floor. I was trying to restrain him from going after Zachary and he pushed me backwards. I was holding onto Daniel and squatting down so when he got leverage on me we were rolling around his room trying to gain control of each other. I was trying to protect him from hurting himself or his brother. It was a low. I was at a loss. It was a scene that I can picture like I was looking down from above at all of us and it was at that moment that I realized that if I didn't change how I reacted to these situations they would never ever change. I needed to find more patience, more calmness, more strength and maybe even more love. I think I've found it within myself. I'm not perfect and sometimes I still need to walk away to calm myself down to find it again. The reward is that with all of the lows the highs are so very very satisfying. It can be more glorious, more rewarding, and more satisfying. I am a truly blessed mother and wife. My wish is that all of the mother's out there, whether they are the parents of children with special needs or not are able to find all of the things that I have. While at times it can be exhausting, defeating, and maddening, it can also be more, so much much more. I am so very lucky to have the family that I do. Happy Mother's Day.

Saturday, May 9, 2009

What's the Reason?

Last night the middle school Daniel will attend next year had an "Activity Night" for 6th graders. I appreciate the opportunity for Daniel to spend any time with his peers while acclimating himself to what will be his new surroundings. I did not volunteer to "chaperon" even though I knew I'd be staying, just in case a quick exit was needed. Most parents just drop their kids off and peel away from the curb, thankful for an hour and a half of time knowing their tweens are in a school building being watched by other parents. I don't blame them. When it's Zachary's turn, I'll be doing the same thing. This time around though, I'll be "chaperon" in my own way. I discussed this in a post several months ago when Daniel attended a birthday party.

I had emailed the middle school social worker last Tuesday asking for a run down of what would be happening at "activity night" so that I could prep Daniel of what to expect. He had just had a fairly negative experience at his current school with a party that was supposed to be a reward for him and his fellow students who received a 3 or a 4 for citizenship on their report cards. I'll digress and explain that.

The kids who earned this reward had elected to have a party at school, watching a movie, having snacks, music etc. I had for this also, asked for information over and over only to keep getting told it was because of his excellent citizenship. I KNOW THAT! BUT WHAT WILL YOU BE DOING EXACTLY? HOW WILL YOU PREP HIM? I was very distracted that week as I was at a seminar for two full days and my 9 year old had decided that it was a perfect time to put on a magic show for our entire neighborhood, (yes really) needless to say, I was busy prepping for THAT. (and no I was not the assistant dressed in a sparkly onesie!) My husband went to pick Daniel up at "The citizenship party" at the appointed time only to find him in the hallway, red in the face and blotchy (his sure sign of being upset). I was not a happy mama. I emailed the teachers to ask what happened, "it was loud", "desks were moved out of the way, which upset him" etc etc. When my response was that if someone would have answered me and wrote out a quick social story to prep him for what was to be expected it may have alleviated the things that were upsetting him, and maybe we should keep that in mind for the end of the year craziness. I got a "good point". These teachers really know their business but in this case, they dropped the ball, probably for some of the reasons that I did. We all see the finish line of the year and just want to get through it.

I didn't want that ball to be dropped again so once I also refocused I sent out the questions to the middle school about activity night. Days went by with NO ANSWER. Finally at 3:30 on Friday (it started at 6:30) I got a phone call. I asked if there was swimming (nope) we went over several other things and I could at least tell Daniel about it.

We arrived closer to 7:00 and the first thing we saw as we paid to get in was the door open to the pool filled with kids. . . swimming. Strike one. Daniel says,"I don't have my bathing suit?" very longingly. If there is something you need to be prepared for it's swimming, right? Using Tanya's (from Teen autism) attitude I decided that it was probably better that I "forgot" to bring Daniel's suit, because he is wheezy and generally miserable from the pollen and springtime beauty and it now seems to have turned into an infection. We looked in the gym, thanks but no thanks, that's no place for a child on the spectrum. As we were walking the sounds of music were pulling us down the hall to the lunch room. There was a DJ and kids were dancing and having fun. This is where we spent the rest of our time. I know a lot of kids on the autism spectrum would have sat there with their hands over their ears, but not Daniel. That kid LOVES music and like a lot of tweens, the louder the better.

Daniel had a piece of pizza, I chatted with some of the moms who were on actual chaperon duty. One of these parents is a teacher in an AI room (autistic impaired) in a neighboring school district. Not surprisingly her daughter is a huge advocate for Daniel and always has been. When this parent saw Daniel out on the dance floor with his peers having FUN her excitement was undeniable. Between the two of us the ideas started flying for what the Elfs group (East Lansing friends of something?? I can't remember what the acronym stands for, these schools have so many darn acronyms!!) but it is a group of kids that are like a Links program (again!) they do activities with kids on the spectrum and Link them to their peers with social activities and in the classroom. We talked of the kids teaching dances like the Electric slide so that they can all do it together at activity nights. Wouldn't that be fun for everyone? I told her of my suggestion to the social worker last year that the kids talk about what's on their IPod in his friends group so he could bring a list home. Then we listened to the songs and put the ones Daniel wanted on his Ipod. It's about bringing them together so they have things in common. Bridging the gap. We both got so excited she wanted to start emailing people right then. It was awesome. During this conversation Daniel was dancing and having fun, which today he says was his favorite part of the night. And ya know what? None of it would have happened if he'd gotten in that pool to do what he always does and swam the whole time. Things do happen for a reason. It's about taking a situation, making the best out of it. If everything went perfect we'd never learn anything.

When we were leaving the school Daniel said, "I can't wait to go to MacDonald middle school next year". Now that's what it's all about.