Saturday, December 12, 2009
Thursday, December 10, 2009
(I just saw a weather update and the windchill is -4) Ahh Michigan.
The most glaring thing this morning came while I was sitting at the kitchen table and he was headed upstairs to get dressed. He usually wears Skecher's similar to this...which, I think, are actually quite stylish and you notice have no ties. An excellent choice for those on the autism spectrum. But I didn't think they'd be great for tromping through the snow. Todd had suggested a few days ago that I get Daniel some boots to wear to and from school. I was realizing as he said that, no middle schooler in their right mind would be wearing boots to school and carrying shoes with them to wear inside. Would they? Am I wrong here? I reminded him that Daniel wears size 11 men's shoes and that isn't super easy to just toss in your backpack. It would be heavy and unwieldy to carry (not good for Daniel while walking home). Todd didn't seem pleased with my assessment, but then suggested the shoes I had bought him (at DSW in the clearance section but were still $45 dollars) for his concert when he needed black shoes.
These are very similar to the shoes. They are much more substantial, heavier, with a thicker sole than the brown ones. I thought it was a good idea so this morning as I was sitting at the kitchen table and I casually mentioned that with the snow, I thought that his black shoes might be more appropriate. He looked at me smiled and said, "oh, ok, good idea" and bounded up the stairs while asking me if they were in his closet. I sat there stunned. It has been a very very long slow progression, but we have apparently gotten there. I have memories of it taking weeks and weeks to transition him into winter coats, pants, and out of crocs. There would be tears, yelling, screaming and when he was little hitting. Switching into the winter coat sent his body into sensory overload. Maybe I was wrong to force it, I know some who do not, but I could not send him into -4 degree weather not properly protected. Once the transition was done he was always fine with it. It was just that transition, it took a lot of work and energy. Apparently I am almost as obstinate as he is. In my opinion the fight was worth it. He no longer struggles with the clothes transitions.
He happily brought down his black heavier shoes, to get ready for the walks today. He had a silly little smile on his face and I could see how excited he was. I didn't ask, but I knew what he was excited for, eating the snow while walking, the whole way.
Sunday, December 6, 2009
As you may have guessed by now, we did something today that we have been trying to do again for, I'm guessing, 8 years. Last time we went we didn't get past the concourse of the stadium. He wouldn't even go to the area by the seats. Today we managed to go to an entire, women's college basketball game.
We live in East Lansing, home of Michigan State University. Basketball is BIG here. We have a Big Ten university within walking distance from our house. Along with that comes certain advantages, such has having great sports, arts, concerts and a beautiful campus all at your fingertips. There can be downsides. I don't think there is a resident who doesn't breathe a bit of a sigh of relief every summer when the area empties and all of us 40 somethings and families can reclaim downtown for ourselves for a few short months.
Todd and I have always been huge college basketball fans. It's something we love. Zachary, our 9 year old, is following suit. We are properly brainwashing him. We are both MSU graduates ourselves and except for one rogue member of our families, we all went to MSU. That person went to that other Big Ten university in our state. . . Zachary has no idea how great he has it. He has been to countless men's basketball games and has never sat any higher than about row 11. We have connections, good ones. The tickets usually come and either Todd and I go if I can scramble up a babysitter, or more than likely lately, Todd just brings Zachary and I stay home with Daniel. It's easier that way. I have to say, I'm getting a bit jealous of Zach taking over my tickets, but he loves it too. We ask Daniel if he'll go, we give him reasons why, the things he'll enjoy, like Sparty, the pep band, popcorn (always our bribe). But no. He remembers. He remembers forever.
We tried it once when he was maybe 5. I think it was a woman's game, which are MUCH quieter than the men's but by no means quiet. We walked in the doors of the Breslin Student events center with Daniel 5 and that would make Zach 2. We pretty much turned around and walked out. Daniel's hands were over his ears and he was screaming and crying. That wall of noise hit him and there was NO WAY he was going in. That was the last time he went for a Big Ten Basketball game. He has been in there for a circus. Which I find to be the biggest sensory overload ever, but he was fine for that. If it's something he loves he seems to find a way to power through it. So the key is finding something he'll love about it....it can be tricky but I can find a way. Along with 8 years of patience, a plan, and popcorn (my 3 p plan!)
We had been discussing it again. We had finally got Daniel to say that MAYBE he'd go. This is the opening. Once he allows the possibility, you have an opening. We both thought he was ready. We already decided to try a women's game. If we had to leave it wasn't a big deal, we'd just leave! Todd and I were planning it. Then Thursday I walked into Daniel's swimming and the sign that it was time to proceed came, my friend Amy said, "I have 4 tickets to the women's game on Sunday can you go?" and the deal was done. It was time to launch the plan.
Thursday at dinner I casually said to Daniel that Dad had told me he might be ready to try a game. "yea, maybe". I left it at that.
Saturday, we said that we had tickets and could go. He wasn't so sure. "It's too loud, I can't do it". Yes you can Daniel, it will be fun!!! "It's too loud" So we gave him the list of "things I can do if it's too loud". 1. cover my ears 2. go out to the concourse 3. go to the men's room and take a break (just like at school) 4. go get a drink 5. Last but not least LEAVE . He has to have an option to leave and you have to agree to it if it's requested. Otherwise he'll never try it again and he won't trust you again, and the next thing will be twice as difficult.
So off we went to the game yesterday. Here is a little montage of our afternoon.
He did PERFECTLY. You want to know the kicker? At one point the BELLE TIRE GUY came on the big screen! I didn't even see it! Todd told me after we got home. Daniel just hid behind his popcorn box and Todd was reassuring him that it wouldn't come back? AND I DIDN'T EVEN KNOW ABOUT IT! That is incredible progress! What a great outing. Thanks for the tickets Amy! He's growing up! Isn't it amazing?
Thursday, December 3, 2009
Tuesday, December 1, 2009
Daniel wandered upstairs and saw Zachary's completed list. Zachary offered to help Daniel (by doing the writing for him or in IEP words be his "scribe") which was greeted with great enthusiasm.
Zachary- "ok Daniel what do you want for Christmas?"
Daniel- "A Vtech Little Smart Alphabet Picture Desk"
Daniel- "A Vtech Little Smart Alphabet Picture Desk"
The list then continued, Toy Story Mania Wii game, The Peanuts Holiday DVD collection.....you get the idea. But number one is the "V tech Little Smart Alphabet Picture Desk". Then he says, "I really want that, I already know my alphabet (yeah, since his was 1 1/2 years old) but I want that". You see, he has a thing about the alphabet. He loves the order of all of the letters, how they always are said in order, he LOVES letters. He knows this is for little kids, but oh how he wants it. And whenever anyone asks "Daniel, what do you want for Christmas?" he says "A Vtech Little Smart Alphabet Picture Desk, I really want that", in a way that is reminiscent of Ralphie from a Christmas Story saying, I want an official Red Ryder, carbine action, two-hundred shot range model air rifle!
There is an excitement and a joy as he rattles it off, just like Ralphie does. It makes your heart go out to him. He has his mind SET. Although no one can respond, "you'll shoot your eye out kid" as everyone did to poor Ralphie. Most people just say ooooooohhhhhhhhhhh and nod politely.
How did he find this toy you ask? I do not know for sure. As much as I can figure he was googling the alphabet and stumbled across it on the internet. I have asked him many varieties of questions, such as, "did you see this toy at someone's house?" "Have you played with it before?" To which I get the answer, "I want that, I really want it". I guess it doesn't really matter HOW he found it. He did find it, and he really wants it. This much is clear. And here it is...in all it's glory!
The only place I have found it, however, is in online auctions. So here I am again. Having flashbacks to when he wanted a "Little Pinocchio carved out of wood with strings and joints" and me searching on the web endlessly trying to find this "toy" that is not a toy, until I finally found one on ebay, beat them down in an auction and took it home. I was willing to pay an astronomical amount of money for that damn Pinocchio, I mean, it is practically a one of a kind, literally carved out of wood, but I believe I got it for like $35.00. Or how about last year when he wanted MAN SIZED BUNNY SLIPPERS, and I FOUND them? It seems that every year there is one interesting item on his list that he has stuck in his head and it becomes my mission to find it.
Sunday, November 22, 2009
It has become a wonderful tradition to go just a few miles to our state capitol and kick off the season this way.
It was truly a magical weekend for us, but especially for Daniel.
Sunday, November 15, 2009
First I know from first hand knowledge that it is scary when Daniel comes at you. He is big. After a trip to the Dr. this week I know he is 170 pounds big and about 5'6" tall. He is careful not to touch you because that is his line. But it takes a strong person to stand there face to face with him. I know because I'm usually one of the people he'll do it too. The funny thing is, he'll only do that to the people he trusts. It's almost like he is calling out to you for help. But I digress, I need some feedback here to know what your reaction would be, because my reaction to the email's was NOT GOOD. First I called the number in email number 1 and no one picked up. Probably because things were under control and they were back to class. So I left a message saying I was in the shower and missed the call and that I would email her.
Thursday, November 5, 2009
Tuesday, November 3, 2009
This weekend I took Daniel for his usual swim on Sunday. I actually got my butt in the pool this week to swim with him. My hope was to make him actually swim more, (he likes to "race" me) and also to get myself a bit of exercise. For a girl who has never (don't hate me) really gained weight (I gained 29 pounds in both of my pregnancies) I have added a solid 12 to mostly my midsection. It's depressing, especially since the only thing that has changed has been my age. While we were in the pool a boy Daniel's age who we frequently see there arrived. I took the opportunity since I was right there to initiate some interactions. Daniel was showing him all of his different fish impressions in the water. These include, swimming like a jelly fish, dolphin, whale etc etc. They are eerily accurate. The boy started playing along and also trying out the strokes and following Daniel. He also added in more typical 12 year old boy things like "swim like a dead body" which Daniel imitated right back. I was thrilled. I suggested they go off the slides and they did. This went on for a good 45 minutes. During this time I started talking to said boy's father. His son swam over and clearly had something to say to me.
He then told me that during band (which he has with Daniel) when "Daniel says what some kids think to be random things there is some laughing and picking on him". I loved his assessment that others may perceive his perseverating to be random but in fact it is not! Anyway, I asked if these kids happen to be kids who had never been in a school with Daniel before. He confirmed my thoughts. I surprised myself by not being upset by this fact. I realized right away that when people don't know or understand Daniel's disability they think it's nuts the way he talks out loud all the time. He did also mention that the two trombone players (one of which Daniel considers his best friend) stood up for Daniel when this would happen. This pleased me greatly and I thanked him for telling me and immediately started writing the soon to follow email in my head.
My solution to this is not to change anything about Daniel, or to get more support but to educate the children. I emailed the social worker, special ed teacher and of course the band teacher and told them what I had heard and encouraged a "talk" with the band class about Daniel. The band teacher said that she had seen this and had talked to the offending children about it and has not seen anything since. The social worker agreed that a little educational talk may be in order.
I know that some parents on the spectrum do not agree with how I handle his disability. I hear undercurrents of "not respecting his privacy" that it is "personal" etc. Some choose the opposite of me and do not tell their kid's peers of the disability. Maybe part of it is Daniel's disability is out there anyway, you can't miss it! But really I think that most kids, even those that are higher functioning, the kids know there is a difference and I have found that if you address the difference and explain it (especially at a young age) the kids just kind of say, oh, hmm. It has been our experience that the kids who went to his lower elementary are all extremely supportive. We were lucky enough to have a fabulous social worker there and every single year I encouraged her to talk to his class about him (when he wasn't there). This has grown into a huge following of kids who are very protective of him. It has also, on more than one occasion (like last time he switched schools) helped kids to feel comfortable enough to approach me or their parents and tell them of some injustice happening. It is my feeling if we tried to hide it and not talk about it, they wouldn't feel comfortable letting us know of something going on.
I don't want you to think he gets harassed all the time. I can count on one hand in 7 years the instances this has come up. I tell people all the time if he can't answer their question, or he is barges past them almost pushing them out of the way, if it works I'll tell them of his autism. It isn't an excuse, but a learning opportunity for others. They can learn one of the many ways autism can look, they can learn how to not be so judgemental (because you haven't walked in anyone else's shoes) and they can learn to be kind. I feel with my 24/7 full disclosure that I'm helping others to do that. I am thankful for the information I received at the pool on Sunday, not that kids were sniggering at him, but because we have the opportunity to help them understand and accept someone else's differences.
Sunday, November 1, 2009
His brother Zachary takes a totally different approach to Halloween and wants to scare everyone. He also needed to by face painted. His mask was a half mask and the picture on the box showed it painted on the bottom half and on the neck. As I was painting him I reminded him that my skills may not be the same as the professional make up artist who most likely painted the kid on the front of his box. You see, Zachary is a perfectionist of the highest order and he's creative and can draw and paint well beyond his 9 years. He said he understood and he was sure I'd do a good job (I've trained him so well haven't I?) So here is a picture of Zachary's finished product. I hope it shows up ok because when I try to enlarge pictures on here they get blurry. Does anyone else have this problem?
Friday, October 30, 2009
The downtown business district in East Lansing graciously open their doors to the children. They dress up and hand out candy (and sometimes coupons along with the candy). The sidewalks are jammed with children and adults getting the jump on Halloween. You can't walk a few stores without seeing someone you know, chatting with the parents and complementing the kids costumes. It's fun. You see kids you know who aren't in your neighborhood. A local B and B does it up big and turns the whole thing into OZ complete with the yellow brick road and all the characters.
It is always on a Thursday, at least as long as we have been attending. Which makes it after Daniels regular Thursday swim. Our friends who we talk to all the time are also heading out to the same event after us, so Zachary and his friend Emma both have their costumes in tow. Therefore, photo ops are always in store. We decided that by the time they graduate from high school we'll have a wall of photos of them together in their costumes. (I'm kidding myself that this will continue forever you understand!) Here are Emma and Zach posing together. Emma was Michael Jackson and Zachary was an undead rocker...or "dead Slash" as I heard some people say.....
As you can see, Zachary fully embraces Halloween. He goes for costumes that are the complete opposite of him. He really really gets into it....
After swimming we went to the Pumpkin walk. Daniel dressed into his costume. He LOVES his costume this year. After years of Daniel refusing to put on costumes, refusing to ring door bells and say "trick or treat", the past few years he has progressively gotten into it. Here we are at age 13 and he is finally in full on Halloween mode. The fact that he was taller and bigger than 95% of the people handing out the candy, means nothing to him. He is in his GLORY. It is fun to watch. I mean really fun to watch.
The little little kids who were out last night, would look up at Daniel and be in awe. They thought he was a "real" clown. They'd say, "mommy look at the clown, hi clown, wave at me clown!" "Shake my hand clown" and my favorite, "can I honk your nose?" Daniel and I were sitting on a bench at the end of the night. We were tired and waiting for my husband to come out of one of our favorite restaurants with food to go. A little boy say us and was giggling up a storm. He was circling us and asked if he could grab Daniel's nose. Daniel says, "look it honks" and Daniel honked it. (HE LOVES THIS FEATURE) then the boy asked if he could and Daniel leaned forward so he could. He made that kids day. And they both made mine. He somehow came alive socially under that clown costume. Here he is on the bench. It was really something. He usually does well with 3 and 4 year olds since really, they have a lot in common. Daniel still enjoys a lot of the same things as kids that age and they think it's amazing this giant person enjoys it.
It was really an amazing night. We were all exhausted. Thankfully, the school had today off. The boys slept in until 9:30 (YAHOO FOR ME!) and got rested up. After all, tomorrow we get to dress up and do it all again! But this time. . . he says he wants his face painted. . . we'll see how that goes! That would be another first for Daniel, but he's determined, so somehow I think he'll do it. He's already told me he will have a white face, red smile and blue triangle on his eyes....the kid has vision!
Thursday, October 22, 2009
A few years ago I allowed the thought in my head and within two hours I was sitting in the principals office of Daniel's 5/6 building. They had called me because they were unable to calm him. I don't remember the circumstances, but I do remember sitting there, texting my husband with tears running down my face.
Am I someone who needs to "work"? No. Actually let me correct myself. I work my ass off. All the time. I'm very very good at what I do. How about have something of my own and get PAID for it? From here on out, it will be "get paid"! No I'm actually pretty content doing an excellent job at home. Keeping on top of Daniel's school, being able to be proactive instead of reacting to problems. Keeping our house in acceptable conditions. This is what I do and have done for 12 years, almost to the day. After I had Daniel, I went back to work for 9 months. At his first birthday I quit. I was working full time, living in the Detroit area. I'd drop him off at day care early and pick him up late. It killed me. I quit and said we'd figure it out, which we did. I can't believe that was 12 years ago. I remember coming home after a long day of work and having Daniel open his 1st birthday presents. Two days ago I sat here and watched him open his presents for his 13th birthday. The fact that 12 years have rushed by me is astounding. I know everybody says that, but it's because it is true.
Let me rewind how I have come to this place. Over the years here I have become very involved. I am part of our Special Ed Parents Organization. For them I sit on our school district wide parent council. I am the voice of the special needs kids. I'm on my third year of this. It has allowed me to get to know school board members, and the superintendent. They have said to me, that just my presence there helps them to think of an issue in a different way, one that involves "our" kids. That makes me proud. I hope that my time and input has helped shape the way our district makes decisions. After I started blogging more last fall, a mom in our district was reading it regularly. I knew her, as Zachary and her oldest are the same age and have played on sports teams together. We didn't know each other well. Our relationship grew and one day she said, "you do amazing things and need to get paid for it". I thought, yeah right. Eventually, through her, I became a part of a group that meets for the Michigan Family to Family Health Information and Education Center (F2FHIEC) (that is a mouthful) I was brought on to help spread the word to my contacts about the wonderful services they have to offer special needs kids and families. They paid me a stipend for my time. It's only once a month, but it was nice to get a check for my time in a meeting!
This same friend then told me she heard of a job at the ARC of Michigan, a State organization for developmental disabilities. They received a grand to hire parent mentors throughout Michigan. Jodi, (said friend) was in a meeting and told them she had their Lansing person. I wrote out a resume and sent it in. In the meantime I was at a different meeting and someone approached me and said exactly what Jodi had said to me months earlier,
"do you get paid for what you do?" She asked.
and I answered "no".
"do you want to?".
"yes, if it works for my family". I answered.
That's the kicker right? I didn't think I'd be able to find something that I could work in. The person who approached me from this meeting worked for UCP (United Cerebral Palsy). They were looking for an advocate. The advocate is not just for CP it is for all disabilities. It is a very limited job. 8.5 hours per week on average. I thought it sounded like a great way to test things out. I interviewed and was offered the job. But meanwhile the Arc job is still out there. I have an interview next week with them. I was very torn about this because I really wanted to hear what they had to say. This job is 20 hours a week and is a Parent Mentor position. Helping families learn the ropes. Training them to be proactive, if need be referring them to an advocate (the other job I accepted). Then an amazing thing happened. When UCP offered me the job they said they really wanted me, but they knew my resume was in at the ARC. They gave me their blessing to interview there and if I decided it was a better fit, gave me their blessing to take it with no hard feelings. But they wanted me for as long as they could have me. What an amazing offer! It took away my stress. I really didn't want to commit to one then immediately look at another job. I don't work that way. I commit to something and stick to it.
So currently I am an advocate for UCP. I have an interview next week. Daniel just turned 13, I just celebrated my 20 year anniversary. I've been waiting for the other shoe to drop. The only thing that happened is Zachary's school is closed for the next 2 days from Swine flu. He is currently well. It's an exciting time for me. It's nice to know those years of going to meetings for "free" and working so hard ended up creating a really nice little resume. After not working for 12 years I was told I had "tons of experience as an advocate". I'm proud of that. It's amazing to be recognized for what you've done. My brain is still trying to catch up to all of this. But I am very thankful for the opportunities that have come my way. It is exciting to think that all I have learned can be put to use to help other families. It will also be exciting to get a small but consistent check every other week!
Times are changing in the Sneathen household. I think it will be for the better.
Monday, October 5, 2009
I have about 10 pair, of this style of pant in a 16 husky. They are perfect for kids like Daniel for the following reasons:
1. The fabric is nice, not rough, not scratchy.
2. They don't have buttons, but they look really nice. With a decent shirt untucked you would never know that they are elastic waist.
3. For kids who are wider (or slimmer) they come in husky or slim.
4. They are exceptional quality.
There are probably many more reasons. But this is enough of list isn't it? These pants, while expensive have really been a wonderful thing for us. Daniel is unfortunately in the largest size right now; 20 H. Therefore my mind is in problem solving mode of what the heck do I do next?
The reason I am posting this is I am boxing up things to give to charity. It occured to me that someone who lives with a child with special needs may really really need something like this about now. So here is my deal. If this size works for you or someone you know and you are the first to take dibs, I will send these to you. The only cost on your part will be to pay for shipping. Once you give me the address, I'll get an estimate and see if it's agreed upon. Then I'll send them off with only the cost of shipping to you.
I would rather have these go to someone I "know" who may need them. Any takers?
Wednesday, September 30, 2009
We had a homework assignment tonight. Very small. He had worked on most of it in academic support. One of the sheets was defining words, telling the part of speech and writing a sentence. A difficult task when you have no idea what a word means. We only had one of these. One was enough. The other sheet was "predicting" also a very difficult if not impossible thing for him. We had two of these words to do. I was explaining a word to him and what it meant and he started SCREAMING and beating himself in the head. Out of nowhere. Left field. For some reason it scared me more than normal and I immediately started crying. Very odd for me. Is it the fact that I am beyond exhausted with the new 6:00 am rising time and recovering from a cold that doesn't seem to want to let go? Is it that today is my 42nd birthday and frankly, MY birthday's aren't my favorite? I'm not afraid of getting old. I welcome it, (it sure beats the alternative?) but I don't know, I've just felt "weird" today. Anyway, my son was beating himself on his head and I was crying. Daniel had no idea what to say to this odd female reaction. I was having a flash back to Mork from Ork, Robin Williams earliest TV gig (now I'm really aging myself) and him watching the girl cry and saying "your eyes are leaking". But really, how many men would know how to deal with my sudden crying? But he did struggle out a "did I scare you?" Very quietly and timidly.
Me: "Yes you did Daniel"
D: "I'm sorry I scared you"
Me: "Daniel, why did you start hitting yourself?"
D: "Because this is hard" he says very calmly.
Me: "Yes, yes it is Daniel". (heart breaking in two)"What's the next word on the list to define Daniel?"
"Forgiveness" he answers.
Sigh. How appropriate.
We had 3 words to discuss and define and explain and this is what happened. He gets so frustrated.
I received a note from his speech teacher the other day. That day Daniel had "participated in the listening comprehension portion of the OWLS (oral and written language scales). In 2007 Daniel scored a 56 (the "normal" standard score range is anywhere from 85 - 115). Yesterday he scored a 63. Good news, he improved. Bad news, he scored a 63. I will be curious to see what some of the other testing reveals. He is up for his three year evaluation. The results of his tests should be interesting, but I don't think it will provide any earth shattering news. We know all of these things, but it may be helpful for the educators to see exactly where he is. Hopefully it will help us figure out ways to better help him so he doesn't keep beating himself in the head? This has been a problem. The hitting himself in the head. It's not very often. But it is disturbing. The good news is he isn't hitting others anymore. The bad news is he will usually hit himself instead. We give him strategies as alternatives. But, you get rid of one behavior and it will always be replaced with something else. You just have to hope the replacement behavior is an improvement over the former one!
The good news is today is another day and his new swimming starts today! The bad news is no cute Nikki instructor. We got a call from the new instructor last night. The new name is Marcus. No cute college girl this semester!
Tuesday, September 29, 2009
I remember sitting at a table, I believe it was covered in playdoh and fighting back my tears. Amy asked me some questions. I don't remember what, but I remember her kindness. I soon found out she was also a mother of a child with special needs. This child turned out to be Joseph. We have had a bond since then, because even though we don't have the exact same challenges, we understand each other. At least I'd like to think so. Zachary and Emma are very similar kids, both "the siblings" of the "special" child. Joseph is much younger than Daniel so I have lived some of the things coming their way. They also have challenges that I have not dealt with. There is one thing for certain. We both have some damn cute kids!
We went to the Buddy walk in support of Down syndrome and our friends. It was a wonderful day and "Team Joe" had a BIG showing. They had food, drinks, blow up slides, jump houses, Sparty (the Michigan State University mascot who is the BEST mascot anywhere!) and the best of all, friends. Here are some pictures of our day. It was wonderful!! If you have a buddy walk near you, be sure to support it!!
Monday, September 28, 2009
He is also up for his three year reevaluation. I met with some of the staff last week about this. It is always interesting to me how the focus shifts from one area to another. Lately the shift has been toward his comprehension. This is always hard to explain to people. Especially because if you know him he is chatting almost constantly. This makes it hard for some to understand that his comprehension of what YOU are saying is very very low. This translates to his reading comprehension too. This is nothing new, but it has taken front stage at the moment. It is the biggest obstacle for him carrying on a conversation. He doesn't understand what is being asked of him or he doesn't know how to respond, so he just quotes some movie. He sometimes does say, "I don't know", but not often enough. I was talking to the new speech therapist during this meeting and we talked about this at length. I told her that when I'm with him and someone asks him something, I automatically rephrase the question so he'll understand it. I don't know how I know it will be helpful, but it is. And it's not something I can explain to others how to do. It is an instinct.
When he is getting a new swim coach or para or whatever, I tell them to use short concise sentences. If you get too wordy you lose him. Quickly. That is hard for a lot of people to do though. We set up his schedule for resource room English this year to work on his reading comprehension. I'm hoping we see some improvement. We did last year and it wasn't our focus. Math was. With Daniel you really have to pick one thing to focus on at a time. Otherwise it's just too much.
The speech teacher at school talked to his outside speech teacher. We are working on it. On Saturday I was talking to Daniel about practicing his baritone. He keeps asking me if he has to practice, "all the time". We are trying to get him on a schedule of 4 times per week. Saturday I told him he needed to practice again. And again he says, "do I have to practice all the time?" I went through the whole scenario yet again telling him it is his band homework to practice. His teacher said 4 times per week is good for Daniel. He sat there for a minute and said, "what's a week mean?"
Frankly I was stunned. He doesn't know what a week is? This took me by surprise. It also made me very sad. We use calendars and planners all the time and he doesn't know what a week is? I showed him the calendar and explained the weeks. Each week (there it is again) at speech we turn in a job chart "for the week". It blows my mind to think of how many times a sentence starts with "this week" or "next week" and I realize he has had no idea what this means. On one hand, I'm thrilled that he could ask me that question and get the help he needed to figure it out. On the other it makes me realize how far he has to go and how little he understands of what people are saying to him. It also makes me even more amazed at how well he does on a day to day basis.
These glimpses into his mind are always a mixed emotion for me. I know that being able to ask will help him clear up some things. But I can't help but feel sad for him that he walks around daily with everything so unclear. As usual just when you are feeling up, something can bring you down. It's the way it goes. It is part of our constant struggle. You can focus on the positive or on the negative. I choose the positive. Otherwise, I don't know how I could get through the week.
Thursday, September 24, 2009
What also happens every year is I think school will start and I'll feel relaxed. It never happens. I end up so busy, despite having the kids gone from 8 - 4 (by the time buses deliver everyone) that I find myself wishing for the lazy days of summer again. How could I have been so foolish to think I wouldn't be busy? When will I ever learn?
Besides my endless lists during the day, the nights turn crazy. Last night my husband had is third night meeting in a row. I'm on my own. I know a lot of parents are on their own every single day, but we pretty much plan our lives thinking that there will be two of us to handle it all. I found myself feeding the kids McDonald's and bringing my "Bacon Ranch" salad with me to Zachary's flag football practice, Daniel brought his Nintendo DS and we hung out in the car for an hour. Once I got home I realized I had made a huge mistake in not checking backpacks before leaving. It was 7:45 and there was a lot to do. I had already told Daniel he would need to practice his baritone. He is supposed to practice at least 4 times a week for 15 minutes. It doesn't sound like a lot but we are finding it very difficult to fit in. Mostly because you usually have to sit with him and push push push or it won't get done. Last night Zachary had to write sweepstakes questions for school which includes writing a question from newspapers, or these Time for Kids that they get from school. Three questions, one about local/state, one national and one international. With his sincere questions after reading each article, trying to understand the workings of health care reform and the effect of incandescent light bulbs on the environment, it isn't a quick assignment. (he's in 4th grade). Because of these sweepstakes questions our dinner conversation has switched from SpongeBob to "did you know that Meridian Township is having budget problems, they basically have three options....." Did I mention he's in fourth grade?
As we were reading the articles for homework I told Daniel he was on his own for baritone. He needed to play each of his songs one time. I know from previous practice that takes him almost exactly 15 minutes. I told him I'd be listening from the kitchen. He asked if he should "keep his door open so I could hear him better?" Um, no Daniel, I can here your gigantic brass instrument just fine. In fact, with our paper thin windows I'm sure that most of our neighborhood can hear him. (Sorry everyone )Daniel had a math quiz we needed to review for. Showers needed to happen, Zachary was insisting on working on his Michigan map project due October 9th (I really don't know how we have raised such a task master of a 9 year old) and the whole evening was spiraling later and later. Daniel was very proud of himself for practicing on his own. It took us two years to get to this point, but I think our busy evening forced that issue. Now we have a new routine, involving less help by a parent, which is the positive thing that comes out of craziness. It forces them to be more independent. They have to be. There was no other choice.
As I came out of Daniel's room and the last light was turned out, the house was quiet. Todd strolled in the door from his meeting kissed the still awake children good night, was the hero for being there before they went to sleep and asked what I'd been up to....To this I could only roll my eyes at him and say A LOT. Today I am going to email Daniel's speech teacher from when he was in 4th grade and kiss her feet because when Daniel was in 4th grade she did his sweepstakes questions with him. All I could think about was how thankful that I was that she took that off of my plate for a year.
The school year is upon us. I'm meeting the school for Daniel's re-evaluation, going to my own committee meetings, juggling homework, sports and instruments, pleading with transportation at school to maybe bend just a little bit, preparing for a garage sale, trying to keep the house fairly clean and people fed and feel like I'm barely holding my head above water. And next week I have jury duty....fantastic.
Friday, September 18, 2009
As of the first day of school we had no idea who his para would be. The first day I walked him to the bus stop (the bus carries highschool and middle school kids). I put him on the general ed bus which was beyond capacity. He had several wonderful neighbors on there with him. I knew the bus driver, (who is AWESOME) and whispered to her that his IEP has him sitting behind the driver. He did, even though it was so full. I got off waving (the only parent within MILES) and he looked scared straight. I was having an internal massive breakdown while smiling and waving. I just had put him on a over packed bus full of nasty teenagers, on the way to middle school, where I had no idea what his support for the day would be. NO ONE CAN EVER TELL ME I CAN'T LET GO. Wow. I had many other parents of general ed kids say they were scared out of their mind how was I coping? I had one neighbor ask me if I needed to take some xanax, the other one offered for me to come over at 9:00 am for a cocktail. I put Zachary on his bus at 8:00 (same school since Kindergarten, he started 4th grade, I just shoved him on and walked away :) my husband and I went out to breakfast. I got home and marched over to my glorious neighbors. It was her girls who were on the bus with Daniel. Three of her kids were changing schools and it had been a hectic start to the year. By God, we had a drink. Tequila and orange juice if you are curious. I have to say THAT WAS THE MOST BRILLIANT PLAN IN THE HISTORY OF THE WORLD. I'm almost ashamed to say how much better I felt, although I don't know if it was the tequila or chatting with my friend for 2 1/2 hours. Probably both. Please don't think less of me! :)
Daniel did have a substitute that day. She was ahem, "fine" according to the social worker (sw). But they thought they might get a different one the next day. Which they did. If I've lost you, Daniel's para pro is on family medical leave until November 30. So we have 12 weeks to fill. This day two para was quiet wonderful, so I hear. I haven't yet met her. She has agreed to stay on until November 30. All the teachers are reporting a wonderful rapport with Daniel and a very calm demeanor. Yea.
The real hero in all of this is Daniel. He never missed a beat? Can you believe that? He was SO excited to go every day. He is the most amazing kid EVER. I am now walking to said tequila pushing neighbor's house (just kidding Elizabeth) and he is continuing the walk to the bus stop with 5 kids from the hood. All girls. He is growing up. Let me just point out this was a huge, huge huge step for me as well as him. He is ALSO walking home with two neighbor boys, over the pedestrian overpass over the very very busy road and all the way home. Without me. Just the three boys, who stepped up and asked to help. Yes, you heard me, two 12 year old boys asked, several times, if they could walk Daniel home every day. AND I SAID YES? Of course this is after I wrote the longest email in the history of the world giving them do's and don'ts and exchanging cell phone numbers with them. That second day of walking I sat on my porch willing myself not to text them "where the hell are you?" "is he ok?" "are you ok?" Nope I didn't do it. I pretended to calmly read a magazine and pretended to enjoy the nice weather, while my head was screaming these things. I picked up my phone to look at it for the 400th time and they walked around the corner. Ahhhh. Sigh. Daniel is in his glory. Mom is losing it a bit, and trying to give him the independence he himself has advocated for. Every day I am more and more proud of not only Daniel but the wonderful community we have here. I am truly blessed. This has been a really hard two weeks for me.
The honeymoon period is ending at school. Some rockyness has happened. I went to an incredible two day conference out of town. I sent in my resume for a job and now I have a cold. I next need to figure out how to clone myself. More on all of that later. I don't want to ramble on too long. But thanks for checking on me bloggers. You are a wonderful community too!
Friday, September 4, 2009
We are in the home stretch before school starts. He is supposed to be taking the bus again this year after a two years hiatus. This is something he is very excited about. I have been in negotiations with the district about how some of this will look. The bus has always been the most frustrating part of his schedule. I don't understand how I can get everything else set up to perfection and a bus can continuously get in my (and many others) way. But it is the case and here I am waiting for information. Frustrating. I don't really feel that I can say any more than that, so it will just have to stay with that amount of information. . .
I was sitting next to Daniel at Devos Hall in Grand Rapids, watching a High School Musical production. He loves these live shows! At one point he put his arms up and I almost passed out. When did he get smelly? Wow. I texted my husband (who was at his parents house) "D needs deoderant, fast." Luckily his is obsessed with showering and does so daily. I have to keep telling him to stop washing his feet. Everytime he goes outside he comes in and washes them. I have "mentioned" a few times that showering before bed and washing them then is sufficient, unless you are walking in mud for some reason?
Michigan summer has, well, not to sound repetitive, stunk. It has been cold, wet and depressing. This last weekend has finally decided to be high 70's and clear skies. We will hopefully get in some last outdoor swimming.
We have been shopping for clothes. He is in the top size of his favorite pants, 20 husky. What next? I should have pushed the button thing earlier....
I need to work on my resume this weekend. More on this later. How is that for a teaser?
I hope everyone has a wonderful holiday weekend!