Thursday, September 29, 2011

Sleepless Nights

Have you ever just been unable to sleep? Not fall asleep -- but sleep through the night? That's been where I've been for quite a while now. I fall asleep quickly but am awake starting around 3 or 3:30 and I'm lucky if I ever fall back to sleep. And it definitely takes a toll. My patience is reduced, my temper rises and I just feel lousy.

Last night I couldn't stop my mind from racing. I was thinking ahead to upcoming IEP meetings. I was thinking about Rachel returning to pre-K soon. I was thinking about a conversation I had before heading upstairs to bed. I was thinking about Daniel needing to finish his homework by the end of the week. I was thinking about Rachel's upcoming dance class. I was thinking about that past moment in Simon's music class. I was thinking about, well, I don't know what else....

There is just so much stuff going on right now. Rachel is heading back to pre-K on Monday. We will see whether the ADHD really was at the core of the problems she was having last year or if that really was not what was causing her failure to succeed. So many things are based on that fact. We are assuming that medicating the ADHD will solve that problem for her. We are counting on it. She will be going to a new developmental pediatrician on October 10 and we plan to go to this appointment armed with some data regarding her school performance. If we can compare where she was before and after the medication was introduced we can make a determination if we are doing the right thing and then work out some of the specifics. But we need that answer soon because her IEP Meeting is on October 11. We will be making a preliminary decision about her kindergarten placement at that time. That is MAJOR! All right -- in the grand scheme of things, it's probably not THAT big, but sitting here right here right now, that's what we've been working towards for 2.5 years.

Then there's Simon's teeth. He lost his tooth last week. I looked over during dinner and saw a space between his teeth. More than a space. A gap.


Yup.....he'll be 5 on January 12 and he has lost his first tooth. It looks like it came out cleanly with no sign of blood which means that it has been loose for some time. I saw something strange with this tooth a few days before, but since I know he grinds his teeth (much to my chagrin), I thought that he had ground his teeth so far that it actually affected the tooth's size. But how could I have NOT noticed this?!?!?! He has his first appointment with the dentist next Tuesday. That is going to be an interesting experience considering he won't even allow me to brush his teeth and he won't open his mouth for anyone. I'm creating a social story for him which will hopefully help to prepare him, and we're going to a dentist who has been trained in working with autistic children and their office has been informed of Simon's issues and sensitivities. But still, I'm TERRIFIED of what is going to happen on Tuesday.

Then we have Simon's IEP Meeting which is still to be scheduled. I have spoken to his teachers about my goals for his kindergarten placement and they are working with him to make it happen, but they warned me before the start of school that I am expecting an awful lot from him. Is it reasonable? But we're trying and I would like to think we are going to make it.

What is most frustrating is that I can fall asleep quickly enough. In fact, it rarely takes me more than 10 minutes to fall asleep once the lights are out and I've had a moment to settle into bed. You would think that these things would prevent me from FALLING asleep. But no....I get that initial sleep and then I wake up to think of all these things.....

I think I need to get more sleep....

Tuesday, September 27, 2011

Making Dreams Come True

Yup....we're less than a week away from Rachel starting her Dance Lessons at The Studio of Dance. We are all so excited. I'm excited FOR her. And I'm patting myself on the back asking our neighbor seeking a recommendation for a dance class for her which is where this started. We don't know, like everything else, how this is going to go. But based on her apparent interest, I think she is going to LOVE this. I think that she's going to be entranced with the mirror and the barre. I think she's going to love making noises with her feet wearing the taps on her shoes. I think she's going to give this teacher a run for her money. But I also think she'll learn quite a bit.

Score one victory for Mommy!!!!!

I'm calling this my first success in my role as a Parent Advocate. Yup. I spoke with our local office of the Autism Society (MCASA) and asked if they had a problem with me calling myself a "Parent Advocate" since I really have no academic training -- just on the job experience with regards to my own children. They asked what I had been doing in that role and I described my Facebook page and this blog. I also told this individual about my responses on other Facebook pages, Circle of Moms and other websites. I also told him that if anyone asked me a question, no matter where, I would do my best to help them find an answer or give them an uplifting word. If I didn't have that, I listen and try to help provide a different perspective so that the person I was speaking to could perhaps think of things from that point of view. I don't know how many people that has helped, but I do try.

And he told me that, as long as I made it VERY clear if someone was to ask for my "professional advice" that I have ZERO legal training (which is implied with the term "Advocate"), I could call myself a "Parent Advocate". I do know where to look for information, but I cannot claim to have this knowledge. I am a parent of two autistic individuals. I advocate for them. I learn what I can to be sure to give them the highest likelihood of success in school and beyond. And I do my best. He told me that he would put my name and contact information on the list of parents who are willing to talk to those who just learn of an autism diagnosis reaching out for help and advice. That, alone, is something I consider an honor. He also told me about ways I can get more involved in their organization, things I plan for myself for the next several years. Unfortunately, right now that's not an option because all of the meetings are very inconvenient for our schedules, but they are not likely to change and our schedules will likely change as my children grow and change. By the time they are all school age, I may find myself more available for a more involved position within MCASA.

This summer, Kevin heard me talking to a stranger in a park near my in-laws' house who was coping with a recent autism diagnosis in her son. I was referring this person to a couple of Facebook pages (including my own) to give them a place to go to ask questions or get information. I also mentioned this blog. I don't know if this person ever took me up on my suggestions, but I made it available. He suggested that if I had business cards, it would make the transfer of this information so much easier. So, when we returned visiting family this summer, I went to VistaPrint to learn about creating business cards. I started playing around with the templates that were available for free to cheap cards. And I found a design that I really liked. It has 3 owls (like my 3 kiddos) sitting on a branch. And I added the text but decided I needed a title. That's when I contacted MCASA and got their permission to use this title.

These business cards are due to arrive in the mail today. I am very excited to see them on paper -- I've been seeing the computer image for a few weeks now. So, the career that I began to consider for myself nearly a year ago is starting to come true. I don't know how lucrative it will be, but that's not really the point. It's about helping people get through these first few years (this will expand as I learn more, I'm sure). It's about pushing for changes and education in the general population. It's about making a better world for my children and others who share their diagnosis and their family of diagnosis. It's about making my mark on the world for my children.

I'm feeling pretty good about myself right about now.

Tuesday, September 20, 2011

Matchmaker Matchmaker Make Me a Match.....

....that's what I feel like right now. I just came back from volunteering in Daniel's classroom and found it an AMAZING experience. Last year I went with the kids to the computer lab where they played games and learned the basics of using a computer. This year I'm working in the classroom, filling in as needed while the teacher is working with the kids in small groups.

I know a few of the kids from last year. And they're a good group of kids. And now I REALLY get to see what is happening in the classroom. I see the independent and cooperative learning that they are doing and still spending the time with the teacher. There were some minor issues for Daniel with me being there (his need to show off, for example), but those will diminish as he gets used to me being there (he's only in first grade, after all). I really had a lot of fun and I am looking forward to coming back next Tuesday to do it again!

But I saw something specific in the classroom today that made me take notice. There is a little boy in the class who sits near Daniel. He's very sweet and well mannered (his chair accidentally tripped Daniel [who wasn't looking where he was going] and he IMMEDIATLY apologized). I was walking around helping people on whatever they were working on and I noticed this child was talking to me but wouldn't look me in the eye. Other little things throughout our conversation made me think that he was on the spectrum, but I can't ask the teacher, nor can the teacher tell me if this were the case. But I strongly suspect.....

Anyway, this boy was telling me about some of his favorite things. Star Wars and Legos top the list. Now, who does this sound like to you? DANIEL!!!!!!! He is OBSESSED with these things!!!!! These two boys would have a BLAST having a play date together. And, if my suspicion is right and this child IS on the spectrum, I would love for him to have a friend that would understand. Daniel cares very much for two children on the spectrum in his brother and sister, even though I don't think he would admit it to many people other than his family. It would help teach Daniel to be more patient and teach him some of the struggles that those on the spectrum experience every day. And it would give this other child, if nothing else, a friend.

And it would potentially give me a new friend/contact/kindred spirit. Autism Moms are often friends, not necessarily because we are the people who we would naturally seek out, but because we have something very personal in common and we share this bond that we never asked for. We learn from each other. We share knowledge more than most other groups I am aware of, because we don't want others to go thru the struggles that we have already dealt with. We want to see those around us continue to move forward rather than backwards.

I still want Daniel to be friends with this boy, regardless of whether he has ASD or not -- as I said, he's a VERY nice boy with many similar interests to Daniel and I think they would have a great friendship.

Gee, I feel like such a matchmaker.

Saturday, September 17, 2011

Part 2

Well, today was Simon's next music class. I spent most of this week working up a good mad, starting on Monday. Yes, Simon had a meltdown. But it was a mild one. And there was a cause. He had gotten hurt. He was in pain. Any 4.5 year old reacts when they feel pain. Some have learned to express themselves appropriately, others are still working on that skill. Simon is definitely in that latter group. With a lot of effort, we have been able to teach him how to tell us when he's hungry, thirsty, feeling discomfort.....but pain and illness are difficult for him. When we pair this with all the other things that were happening in his music class last week, who could blame him, autism or not, for coming apart?

Apparently, parents in his music class can blame him. Well, at least 2 parents -- as far as I know everyone else was all right with his behavior in class last week. But I spent all week thinking about what I was going to do when I walked into that room this afternoon. How I was going to "show them" how wonderful my very talented and gifted child really is (and I KNOW he is musically gifted -- that's not just "Mom" talking). I knew I had to explain Simon without being too demeaning. I knew I had to recognize that many people in this world are completely ignorant when it comes to dealing with disabilities. Heck, I was just 2.5 years ago before I was finding myself directly coping with this day in and day out. But I was still furious. I WANTED those parents to pay for what they put me through this week. I WANTED to make them feel small and petty. I WANTED them to squirm in their seats when I walked proudly into the class with my beautiful son!

All week I thought about what I was going to say. This morning, I took my mental script and did my checkdown making sure that all the high points were included. I went to the Facebook page that I am the administrator for (We Care About Someone With Autism) and made my question of the day reflect what I was about to face, making sure there were no areas that I had forgotten about. I knew I was only going to have 2-3 minutes at most to make this impression and I wanted to be the best possible advocate for my son.

So, shortly before 3:00, I walk into Simon's music classroom proud and ready to go. I know what I'm going to say. I go to the back of the room to set us up at a piano back there and Simon selects his preferred seat. We pull out the books and I continue to practice the homework assignments, making sure others can see how gifted he really is. We are singing the songs. He is clapping the rhythms. He's laughing his contagious laugh because he is having FUN. And he is proving that THIS is where he belongs. Then the teacher comes in. I stand up and ask her if I can have the floor for a moment, and she allows me to have my say.

Then I revert from a confident Mom defending her child, to a woman begging others for her son's acceptance.

All the facts and stories I had prepared to say.....gone. All I could do was introduce us, and say Simon has autism. Instead of advocating for him, I spend my time defending him. A part of me spent those 2 minutes I was talking just scolding me -- YOU KNOW WHAT YOU NEED TO SAY!!! But I didn't know who had called to complain. I didn't know if that parent was in the room. I didn't want to make things worse for him or for myself. I just chickened out.

Class went on and Simon did well. He did everything that was asked of him and excelled. He listened to the teacher and proved once again his aptitude for music. He was one of the better behaved children in the class. I spoke to his teacher at the end of class and she pointed out that she also recognized the difference between this week and last week. He made me a VERY proud Momma and proved to me that he deserves better than I gave him today.


Monday, September 12, 2011

When the "Big Bad World" Attacks

I need to vent. I need to get this story out. I need to document a description of a phone call I had earlier today, so when all the dust settles, I can be reminded where it all started. So, if you aren't in the mood for reading a venting post, I understand. Hopefully the next one won't be like that.

This afternoon, I received a phone call from The Academy of Fine Arts. This is the school that Simon takes his music lessons. We started going there in November, 2010 and he has really been VERY successful in their programs. Well, this past Saturday was the start of the new term, and we arrived Saturday afternoon for his Harmony Road 1 class. This is the first in this series and he is now actually learning to play piano. He's learning to read music. He's really on the road to becoming a musician that we as his family know is where he wants to be. We hadn't been at the school since June.

We walk into the classroom. The pianos are different (the silver ones he used all last year [even when he was in this room are no longer there]). There is a different teacher. It's a packed class. There's a different teacher. None of the kids we were with last year are present. There's a new teacher. And the pianos in the back (where we typically sit so if a meltdown occurs, we are slightly more isolated) were taken. And, did I mention it's a different teacher?

The class starts well enough -- he's not behaving perfectly, but nothing out of the ordinary. Then he body drops when the other kids are dancing. I try to pull him up, but accidentally scrape his hand (scratch it hard enough that it's actually bleeding a bit -- he must have caught my ring). That's where it started. He begins to scream. I keep him there for a little while, recognize we have a problem and we go to the bathroom to wash his hands. When we come back, he's still upset and crying emphatically (but no longer really screaming), and we leave the classroom for a few minutes and go for a walk. We walk around the lobby for a few minutes. We walk in the halls for a few minutes. Then we go back into the classroom and Simon does what I feel is fine for the rest of the class. He's doing what's asked of him. He's participating. He does his part at the whiteboard (all right -- he needed a bit of hand-over-hand to draw the circle, but that's not unexpected). When the class was over, I spoke with the teacher and explained that I truly believed that the problems we saw were due to the first class and that this class really is the right one for Simon. And I described his musicality by demonstrating his behavior towards the end of the class showing the power of his ear and being able to mimic the songs that he was hearing on the piano, naming the notes (mi re do on notes other than E, D, C which is how these kids think of these named notes per the earlier classes [note, despite having played piano for YEARS, I have NEVER taught him more than the classes]).

Overall, I didn't think it went pretty bad. In fact, when I came home, I told Kevin (believing this sincerely) that, for a first class, it went quite well!

Well, apparently, I was alone. The office called me today telling me that they received complaints from the other parents. "They couldn't hear the teacher". "A child who can't behave in a classroom shouldn't be in this type of class". Even the teacher had said that she found it difficult to teach with him behaving in this way. The administrator commented that she knows that ALL children have meltdowns from time to time but because of his autism we need to consider pulling him out of this class and going in a different direction. The administrator talked to his teacher from last year (prior to calling me) and the teacher commented that once he had a chance to acclimate last year, he was a wonderful and talented student. This teacher and I discussed his placement for this year as the semester was ending last year and we both agreed that this was the better class for him. And seeing him pick up on everything they were doing, despite his meltdown (which had a distinct cause) tells me that we had made the right decision. The administrator has agreed to give it more time and see if he does better once he "has some time to acclimate to this class".

My instinct -- stand in front of this class on Saturday, tell these parents what they can do with themselves, and walk out, taking my business and money with me. But that won't accomplish ANYTHING. We looked long and hard for a music program for Simon and we found one here. I hate to pull him out just as he's reaching a point where he can make such measurable progress because of the ignorance and impatience of others. So, it's time for me to put on my "Parent Advocate" hat. It's time for me to educate these parents. Before class on Saturday, I plan on explaining to the class that my son is autistic. I plan to remind them that autism is NOT contagious and affects 1 in 70 boys in the United States alone. Simon is more severely affected than many others in many respects, but he is ahead in many other ways. Last week, a specific moment set him off and I will work harder to minimize that happening again. I will seat us in the back of the classroom so that he can be less disruptive and more isolated when and if a meltdown occurs. But he does have meltdowns. He does react to things that go differently than how he is prepared for them to go. And as he understands what is expected, he complies. I plan to mention how he THRIVED in the music classes last year after a week or two and was never the reason that another student or parent couldn't hear the teacher. He always waited his turn (unlike some of his NT classmates) and tried everything that was asked of him. And he made "friends". On Saturday, he walked into a full classroom with no familiar faces other than mine, including the teacher. Over the next couple of weeks, that will change. He loves coming here and this is the class where he belongs.

And I'll keep the comment of "And if you don't like it, you can just )$(@$% it!" to myself.

Saturday, September 10, 2011

Simon's not the only one with a long memory....

Here I am, just shy of 40 years old, and today I think I discovered a new phobia of mine. Firehouses.

Well, not quite firehouses -- just one firehouse. Just the thought of approaching it with my family I can feel my heart rate rise. All I can say is that I'm grateful that it's no longer our local firehouse (we live in an area that is growing at such a huge rate that they recently built a new one closer to our home).

Why did I realize this today? Well, because today they were holding an Open House for the local kids to come and take a look around. They were inviting kids to explore the house and the engines. They would explain to the kids about fire safety. They were performing a HUGE community service, more so than what they do every day. And how did I learn about this? Representatives from Rachel's gym was going to be there helping out, and of course, being Saturday, it was Rachel's gym day. Her class still went on as scheduled....they just had a smaller amount of staff on hand at the gym than usual today. But there were signs.

At some point today, Daniel realized that this was going on. He asked during lunch if we were going to go. You see, he's been there once before and he remembers the experience. He had a great time. He had just turned 4. He got to explore the firehouse. He got to try on parts of the uniform. He even got to climb onto a real-life fire truck. It was really a lot of fun for him. I was there too. So were Rachel and Simon. But it wasn't fun for us. In fact, it was TERRIBLE for us.

(Time tunnel swirlies appear)

You see, that was when our journey into this "Autism World" that we inhabit had just begun. We had just receiving services (probably only a few weeks) and attended a field trip with our local early intervention (EI) program. We didn't know any of the families -- this was probably our first exposure to them. But on a Wednesday morning, I put Daniel, Rachel and Simon into the car and we drove over to the firehouse. We got out of the car and left the stroller behind (you see, I promised myself any time we did anything with the EI team, I wouldn't use the stroller). I had to learn and so did they, how to handle not being so tightly confined. We were there a bit early (we are always either early or late for anything) and we got to look around a bit before the others got there. Daniel immediately jumped right into the experience and was just fine. Rachel and Simon were a bit apprehensive and we were already starting to see the meltdowns. I no longer remember the details but I remember trying to settle Rachel down during one of her worst tantrums ever just in time for Simon to go running off. I remember one of the EI teachers chasing him and trying to keep him contained. I remember trying everything I could think of to engage either of them. We were finally able to settle Rachel down and get her to have a positive experience when she discovered the reflective surface of the fire engine. She had discovered a mirror. And a BIG mirror. And she was able to stare at herself and model to her heart's content. Simon just went from one issue to another. Nothing would grab his attention.

Finally the visit ended. It felt like hours, but in reality, it was probably about 30 minutes. I managed to get them back into their car seats. We had "survived" the experience. Well, the kids survived the experience. I was scarred. I remember turning on a movie for them in the car (something we only do [typically] when they are about to take a long drive) and drove around aimlessly for probably about another hour. You see, driving is one of those things that I do when I need to clear my mind. I can think while I drive. I have explored so many neighborhoods and learned of many hidden treasures in the area through these mind-clearing drives, including where to find the most incredible string of dogwood trees in mid-March. The only other part of that day I can remember was receiving a phone call from EI services while all 3 kids were taking a nap to ask how I was doing (I'm sure they were able to see that I was struggling while at the firehouse -- I'm not exactly adept at hiding emotions [hence why I NEVER play poker]).

(Time tunnel returns to bring us back to present day)

That was nearly 2.5 years ago. Since then we have all learned so much. I'm sure the experience would be completely different if we were to try this again. Yet today when the opportunity had come up, I was grateful to have Rachel's gym class so that I didn't have to go back there. I appreciate everything that our local fire department does. Just like firefighters everywhere, they are willing to risk their lives in order to help protect that of my own and my family's. But if I can possibly avoid it, I don't plan to ever step foot in that particular fire station. Again.

Wednesday, September 7, 2011

Time is Mine Again

What happened?  I'm sitting at the computer, 1:21 in the afternoon.  There are no kids behind me crying that they want to use the computer.  No one claiming that it's their turn to play on the Wii.  No call for a particular television show.  No cry of calling for the bus or for a favorite teacher.  No questions of "Where are we going to go today, Mom?"  It's just me.  Television is playing a Food Network show that has been sitting on our DVR for some time.  The washing machine (and dryer) are running.  The rain is falling on the deck with some distant thunder rumbling.  But there are NO CHILDREN HERE!!!!

Yes, it may have taken a long time, but all 3 of my kids have now started school.  Rachel had her first day yesterday.  She got off the bus and announced that she had a "Fun Day!".  Daniel has already managed to get into trouble with his teacher, breaking a mirror trying to create a self-portrait.  Simon has already used a sick day (yup, he had a fever over the weekend and had to stay home from school for a day).  Reports from Rachel's and Simon's teacher have been positive telling me that they have adjusted nicely.

I still have a few worries about Rachel and her adjusting to her new classroom.  She still talks about "Ms. Suzanne" as her teacher.  At this point, I'm not sure if she recognizes the truth and that she has a new teacher this year and "Ms. Suzanne" is what she calls school, or if she is refusing to accept this truth.  I'm beginning to think the former.  We are still holding off bringing her to Pre-K until the school year establishes itself, so at least 3 weeks.  We have her next doctor's appointment on October 10 and we will need to make a decision of whether and (if so) how to change her medication regimen.  That will be based on her school schedule.  I really would like to see her in that pre-K classroom for the full time (full morning or afternoon) as quickly as possible, so we can ascertain where we need the extra work to prepare her for kindergarten.

This year is going to be a bit crazy.  We have set a lofty goal of sending both Rachel and Simon to our home school for kindergarten next year, even though they will likely be going into special needs classrooms.  I would also really like to see Rachel (at least) brought into a typical classroom for a portion of the day.  Additionally, Daniel really needs to settle in to his new routine.  In addition to starting school, he's started soccer and we hope to get him involved in scouts soon.  Gymnastics continues for both Daniel and Rachel, Simon begins piano lessons (yes, they are now piano lessons) on Saturday, and we have found a Dance class for Rachel.  Daniel also needs to begin his religious education this year.  Additionally, I have my own responsibilities.  I am a classroom volunteer in Daniel's first grade class.  I am on the board of a local MOMS Club International chapter.  I also am the Volunteer Coordinator for our home school's PTA.  I'm trying to get a career as a Parent Advocate started.  I administer a FB page and try to keep myself organized on other fronts.  And I still have this house, a dog and other random responsibilities.

I think I've bitten off more than I can chew.  This week is about trying to figure out exactly what I need to get done on monthly, weekly and daily basis.  I plan to truly organize myself by setting schedules and "To Do" lists.  I know there is time for everything -- I just need to figure out when that is.

But with the start of a new school year comes a new set of responsibilities.  It's a chance for me to start being ME again.