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Friday, November 15, 2013

Victory!

IEP meetings are finally over. I did a lot to prepare for them, and I'm glad I did. As we were going through the meetings, I thought about how lucky I am that I have my social work background, and that I specialized in school social work. IEP meetings are so stressful and confusing, even if you know a little about what you're talking about. I can't imagine how hard it must be for parents who don't have a background in this field, who are being thrown into this for the first time. The laws are intricate, the school policies are complicated, the lingo is foreign...I really feel for parents who aren't used to all this.

We spent four hours at the school yesterday, hashing out how to best help Jonah and Ben. We had Ben's meeting first. The team had to decide if Ben qualifies for special education given his current level of disabilities. The team kept teetering between giving him an IEP and just keeping him on a 504 Plan. I had met with an IEP expert at The Therapy Tree several times to talk about how I could best help the boys get what they need during the meetings, so I was prepared with my points of concern. Every time the team paused and started leaning towards not giving Ben an IEP, I piped up with another valid, well-thought-out concern. It was a long, intense meeting. While the team debated, every cell in my body was screaming "Give him the IEP! Can't you see it's exactly what he needs?" Finally a team member said "Just give it to him! He needs it!" Yes. Yes. Yes. 

The only special education minutes Ben will receive will be social work, which he is already getting weekly anyway, and a special ed resource period. I know Ben may hate this resource period, because there is a smaller ratio of students to teacher, and so more attention will be paid to whether Ben has completed his homework, helping him learn study skills, organization, how to break up long term projects, etc. But this is what he needs. This will help him. Even if he hates it.

Ben will maintain his eligibility for his IEP for three years. So this will carry him through 9th grade. I can't wait to start seeing the benefits of this extra help he will get now.

Jonah still has a 504 Plan because he didn't qualify for an IEP. The good thing was that we amended his 504 to reflect his current level of needs, and so we were able to make sure he is still getting what he needs to succeed at school. I told the team I don't care what we call the plan that the boys qualify for. I don't care if it's a 504 or IEP. What I care about is that there is documentation about how the school will meet the boys' special needs because of their disabilities, so that school is a place the boys can be successful. 

So we're happy. The boys will get what they need at school. The team listened to everything we had to say, all our concerns. We are blessed to live in this district, because this has always been our experience with our school. Every time we have a 504 or IEP meeting, I completely freak out with anxiety. I prepare for weeks ahead of time. I research. I get all my materials together and study them. I ask therapists, psychiatrists, and IEP experts for help. I focus all my energy on figuring out how to best present my concerns so that the school understands what I'm seeing at home and can find a way to help the boys at school. So now that the meetings are done, I'm totally wiped out. I feel like I've been put in a washing machine on spin cycle for weeks. I want to put on a pair of sweats, crawl into bed with my fuzziest socks on, drink hot cocoa with marshmallows, and watch Meg Ryan movies until I feel human again. 

But Jonah is still sick. And kids still have to get up and get help to go to school. And we still have therapies. And the dog still has to go out so he doesn't use my carpet as a toilet. 

So there will be no Meg Ryan movies. Life goes on. I am very happy we have this small victory for the boys. I hope they begin to feel some change in regards to school. I hope things get clearer for them and they're able to function better both at home and school because of the changes we made. Hurray for victories!

Wednesday, November 13, 2013

Home Depot Pumpkins

Fall is my favorite season. I love the colors, the smells, the leaves changing. It feels cozy and hopeful, and with every leaf that leaves its branch you know you are closer to the holiday season. A few weeks before Halloween, we decided it was time to get our pumpkins. It took us most of the morning to get the kids ready and willing to get in the car, but finally we made it. Everyone was in the car, some happier than others. We started the trek to the pumpkin farm, which is my favorite part of every Fall. I was anticipating the apple cider, the hay ride, the pictures of my adorable children with goofy smiles on their faces...I had a Halloween movie on the car's DVD player, we were talking about Halloween costumes and parties. Getting in the mood.

Then it started to rain. Actually, pour. 

With much trepidation, Alex and I decided it just wasn't possible to visit the pumpkin farm that day, because even if the rain stopped, everything would be wet wet wet. I gingerly broke the news to the little people in the back seat. 

They went ballistic.

We finally figured out that they weren't so disappointed that we weren't going to be able to go to the pumpkin farm as they were devastated that they couldn't carve pumpkins that day. To them, carving pumpkins was the most important part of the day, not doing Fall-y stuff at the pumpkin farm.

Alex said, under his breath so only I could hear, that maybe we should go to Home Depot to get pumpkins to carve this year. 

HOME DEPOT?!? HOME DEPOT FOR PUMPKINS?!?

That goes against everything I hold holy about Fall. Home Depot is a wonderland of home project possibilities, and I love it there, but it is definitely not a pumpkin farm. Home Depot does not have hot apple cider and cider donuts. Home Depot does not have falling leaves and sweet picture opportunities. Home Depot does not have the ambiance of a pumpkin farm in Fall. I just about wept at the thought of Home Depot pumpkins.

But then I thought this was one of those times when the needs of my children outweigh my desires, or what I feel is important. I decided that what really was important about the day was to get pumpkins, regardless of where they're purchased, and carve them. So I agreed that we could go to *gasp* Home Depot for pumpkins.

It actually worked out great. There was none of the overstimulating things that end up making our pumpkin farm visits a nightmare. The pumpkins at Home Depot were sitting out on the front sidewalk, covered with an awning so we didn't get wet while choosing the perfect ones. There was no music, no swarms of people, no endless walking, no mud and hay to get in our shoes, no smells to overwhelm our noses, no games or rides to fight about "doing first," no snacks to spend a million dollars on, no miles and miles of pumpkins to make a child with ADHD and SPD overwhelmed to the point of shutting down because how could he possibly choose just one pumpkin out of the 8000 choices that were available?
It was just a few pumpkins, stacked on the sidewalk, at Home Depot, in the rain. My kids were happy. I swallowed my disappointment as I watched Ella prance around picking her pumpkin, and saw that although it still took Ben an insane amount of time to make a decision, he wasn't overwhelmed. No one was fighting because they were exhausted and overstimulated and frustrated. They just were picking pumpkins in the rain on a sidewalk. So I tucked this knowledge into my heart and decided that I needed to be ok with the fact that sometimes my expectations have to change for the happiness and well-being of my children.


We took our specially-picked pumpkins home and carved them. The kids were happy.

The kids had the following Monday off from school, so I took them to a pumpkin farm that day instead. It was wonderful, for the most part. The air was pristine and perfectly Fall-like. We rode all the rides and played all the games, at least three times. We had lunch at a picnic table. We spent all day having relaxed Fall fun. Without Daddy, which was sad for me but made Daddy happy because he doesn't get as big of a kick out of the whole pumpkin farm as I do. He feels more like the kids do at those places- overstimulated, suffocated, exhausted, and overwhelmed. And crabby, don't forget how the rest of my family gets very crabby at these farms. In fact, it is quite possible that from now on I should just rent a family and go with them to the pumpkin farm. My family really doesn't enjoy it that much, and I force them all to go every year because you HAVE to go to a pumpkin farm in the Fall! It's Mommy's Rule! There aren't too many things that are as important to me as going to a pumpkin farm. Maybe because I didn't get to do that special Fall activity as a kid, I am filled with excitement every year at the prospect of all the Fall activities I will get to do at a pumpkin farm with my kids.




Sometimes it's so 'in my face' that my kids have special needs and need special accommodations. Accommodations from the world, from school, and also from me. There are many times when I have to adjust my expectations, and lots of times it's not too hard. However, when a pumpkin farm was involved, it was extremely difficult for me to change my expectations and give my kiddos what they needed in the moment. I did it, but it was really hard. I have hopes and dreams and expectations like any parent, and when something that is important to me has to be changed for the sake of my kids, it takes a little time for me to be ok with that. I get there eventually- like when all the kids were blissfully carving their pumpkins and sticking their hands in the oozy, gushy pumpkin guts (something they used to all be afraid of!), I knew getting Home Depot pumpkins that day was the right decision. And I still got to go to the pumpkin farm, it was just a pumpkin-less excursion. 

3 Minutes of Boredom

For about three minutes last week, I was bored. Actually bored. There were no sick kids to pick up from school. There were no rages happening. There were no teachers letting me know that my kids were having challenges. There were no therapies to go to at that one moment in time. I told my dad I thought I might need to get a job because boredom and I just don't mix. He said if I was bored for a good solid three months, then he could see me getting a job. Otherwise, he said, just wait. You'll have another crisis before you know it. Of course my Daddy was right.

Last week I got an email from one of the boys' teachers saying that she was very concerned about the fact that they had book reports due in about 4 days, hadn't read a book, one of the boys hadn't even chosen the book, hadn't completed the report, and are currently both failing her class. She said she was "passing the assignment of the book report off" to me, in hopes that I would be more "convincing about the importance" of this assignment. I wrote back and said that I have been trying desperately to get the boys to read a book. I try desperately to get the boys to do anything and everything they are supposed to do in life. Showers, homework, therapies, clean underwear...This is not a laziness issue for the boys. This is lack of executive functioning skills. The boys struggle like this in every single area of their lives, from daily living skills to academic to emotional. This is just how their brains work. No amount of arguing, wheedling, pleading, yelling, bribing, cajoling will ever change this. Believe me, I've tried all those things. Many times, I work way harder trying to get the boys to cooperate with whatever I think they need to do than the effort it would take for them to just do it.
I can tell the staff at school are getting frustrated with the boys. Jonah's social worker had a chat with him this week and he felt she was very tough on him about homework, completing it, turning it in, working hard, etc. These are all skills that need to be improved upon, but that will come with time and practice, not chewing my kids out. A teacher recently told the boys they were failing her class anyway, so it didn't really matter if they turned in their worksheets or not. 

I can tell the staff at school are going through the process I have been through, where they're trying different approaches with the boys to see if anything will get through to them to motivate them to finish their work and get it together. The teachers have tried the compassionate, understanding approach. Then they've moved on to the tougher approach. They've being firm, yet encouraging. They're edging on scare tactics now. Telling the boys they will fail, no matter what they do. That it's not worth turning in late work because they won't earn enough points to make the assignment worth doing. I understand these tactics because I've tried them all myself. I can't blame the school for doing these things. But nothing works unless the boys themselves feel invested and motivated. The boys are just the way they are. Their brains are doing the best they can. The fact that they get overwhelmed when asked to brush their teeth and put their shoes on tells me there's a good chance they're overwhelmed with 6th grade academics also. It's not a question of a cognitive disability. It's an executive functioning, frontal lobe, disability. They're doing the best they can. And, sadly, their best is not currently good enough to meet the expectations at school.

Which is why tomorrow we are having IEP meetings to see if the boys will qualify for more help. I got the reports from the school psychologist and the boys test in the average range overall for everything. Every test. Every evaluation. There are some minor concerns here and there that dot the horizon of how the boys are perceived to function at school, but overall, they test average, act average, hide their problems so they appear average. I'm happy about that, it is a true blessing that the boys have enough courage and strength to make it at school without completely sticking out. But I'm very concerned because the school sees the external things that happen with the boys, but the internal things come out only at home. Because of the boys' anxiety, stress, feelings of being overwhelmed at school, when they get home they let it all out and let me in to see what a ball of nerves they are from holding it together all day. I can see they're disorganized, confused, overwhelmed, discombobulated, and exhausted. This isn't an ok way to get through your school career.

The other thing that really worries me is the fact that the boys have such poor immune systems because they were so premature. They miss a lot of school. A lot. Sometimes it is due to anxiety, but for the most part it is due to illness. It's hard to explain, but the boys have such sensitive nervous systems it seems, that any minor illness makes them feel completely horrible and they can't function at all. So although their fever might be only 100 degrees, they feel like it's 107 and they're dying. They can't concentrate or focus. They feel they can't survive at school. They come home and shrivel into the fetal position for as long as it takes to feel better. Even if it's just a cold! Jonah has come home sick three times in the past three weeks, including today. I took him to the doctor, who said it's not strep. They're doing blood tests to check for mono, among other things. The boys are just always sick. Last Friday, I had to pick up Aidan AND Jonah from school because they were sick. I never know when all my plans for a day will have to be thrown out because a boy is sick, yet again.
When the boys feel sick, they can't function at school. When they miss school, they feel more anxiety. They miss more work. They get behind. Which makes them feel more anxiety. Which makes them want to avoid school. Which makes them feel more anxiety. It's a vicious circle that I can't break for them. I am doing absolutely everything I can think of to boost their immune systems and help them be healthier, but it doesn't always work. I want help from the school with this. There has to be some way to help the boys keep up with everything even though they miss a lot of school.

I'm nervous about our meetings tomorrow. The bottom line is that I want more help for the boys so that I can see that their level of daily functioning at school is up to par with their cognitive potential. That's not too much to ask, is it?

Last week I got another email from Aidan's dear teacher. She let me know that for the past few weeks, Aidan has really been struggling with focus. She reminds him to pay attention, and sometimes that helps. But he's struggling. I told her that I'm frustrated because I'm doing everything I can on this end to help Aidan. He's on vitamins and supplements and medications. He gets an essential oil blend for ADHD on the bottoms of his feet before school (when I remember). He has fidgets and chewies. He gets all kinds of therapies. At some point, I realized, I'm doing all I can do. The rest is up to Aidan's brain. And I also realized, his brain is doing the best it can. I'm priming it for success, and this is what success looks like for him at this point. He's doing the best he can. The teacher understands this, and I told her I appreciate so much how she keeps me informed. It helps me get a whole picture of how Aidan is doing, so I can be a more effective advocate for him.

Last but not least, little miss Ella has a bit of a diaper rash type deal going on, even though she's long past diapers. So convincing her it won't hurt to pee, and it won't hurt to take a lovely baking soda bath every night, has been like TORTURE. Mostly for me. And also for her. Why don't kids believe me? After the first night when she had succeeded at going pee and I had put her in the bathtub "the hard way" and she realized it wouldn't hurt, Ella said "Mama. You were right." I said I know! You have to believe that I will always tell you the truth! If something will hurt, I will tell you! She said "I know. You never joke me." That's her way of saying 'trick' her. My kids should know by now that when I say something won't hurt, it won't! Crazy kids. How old will they all be when they finally realize this??

Not only have there been crazy things like teacher emails happening recently, but there has also been the normal level of crazy: yucky behaviors because kids are sick and so more crabby and irritable. Kids being even more overwhelmed than usual with demands like put on shoes, take a shower, do your homework. Kids fighting with each other more than usual. Kids fighting with neighbors more than usual. Kids refusing to eat meals, take meds, brush teeth, put on clean socks...I'm worn out. 

As one of my friends said recently, it's the thinking about everything your kids are going through that exhausts you. Yes, it's the running around like a chicken with your head cut off too, to all four kids' therapies, doctor's appointments, psychiatrist appointments, school appointments, extra-curricular stuff, etc. But man, the thinking can get to you. I spend the majority of every day, I think (no pun intended!), just thinking about my kids. About their disabilities and special needs. About their medicines and behavior programs. About their dietary needs and sensitivities. About therapies. About supplements we should maybe try. About school. About what I can say to convince school that the boys need more help to be successful. About anything I can think of or research about that may help any one of them with any one little thing. I think about it when I lay in bed at night and can't sleep because of worry. I think about it when I'm stopped at a red light. I think about it in waiting rooms. I think about it in the shower. I think about it when I'm tying their shoes in the morning. It's exhausting! If I was paid to brainstorm about my kids and their special needs, I would be a wealthy, wealthy woman.

My dad pointed out I don't do well with boredom because I thrive under stress and pressure, and am good at multi-tasking all the unique challenges our family has. Thank goodness I listened to his advice and didn't run out to apply for a job last week during my 3 minutes of boredom! Because sure enough, we've been bombarded by our usual level of chaos. Maybe even a bit more than usual. I just keep telling myself once I get through the meetings tomorrow, I'll feel wonderful and light (assuming I get what I want) and I can take down Fall decorations now that we have snow and put up Christmas ones with joy in my heart. (Don't tell my mom I've already been listening to Christmas music. For some of us, the holidays can't come early enough or last long enough!) And just move ahead to the next challenge that next week will bring us. 

Once I get through the meetings tomorrow. And Jonah gets better. And Aidan starts concentrating better. And Ben picks a book for his NEXT book report. And Ella's rash goes away...at least there is no more boredom around here. Those three minutes were uncomfortable and miserable for me. But maybe a little peace and boredom would be ok once in awhile. Maybe like two minutes.

Wednesday, November 6, 2013

Worms and Candy

Yesterday, Aidan got off the bus after school and carefully, thoughtfully walked up the driveway, looking all around on the ground as he walked. Instantly, I knew he was looking for worms to save. It had rained a little bit and Aidan was on a mission to return any and all earth worms to their lovely cozy home of the lawn. It reminded me how insanely, irrationally scared he used to be of worms. A couple years ago, if it rained, I would be in for a day of carrying Aidan around outside while he shrieked in horror at all the worms on the ground. He refused to play outside after it rained. He refused to walk across the driveway. He just couldn't deal with it. He was terrified of worms. 

Many things have changed since our Earth Worm Terror days. Now Aidan is best buddies with any worm he finds. He is able to navigate the worm-filled driveway after a rainstorm. There are so many little things that you forget were a problem, and when you do think about it, you realize how far you have come.

Halloween is another thing that has changed for our kids. It is usually a mine field for them. The excitement and stress of getting costumes on after school, finding friends to trick-or-treat with, ringing strangers' doorbells, getting as much sugar as you can, all lead to meltdowns of epic proportions by the end of the night. Times four. This year went a little bit better in many ways. No one had to wear makeup, so faces felt normal. Ben and Jonah went to a friend's house to share the Halloween festivities. I took Aidan and Ella out to brave the rain, with clear ponchos that I had bought at the dollar store so everyone could still see their costumes. Ella had trouble walking at first because she kept stepping on her poncho. So I got a scissors and cut off a foot of it. She declared with a thrill of amazement in her voice "MOM! You are my HERO! You are amazing! You are the best mom ever!" Sheesh. Who knew that's all it would take to earn Best Mama Of The Year?

Aidan and Ella were thrilled that trick-or-treating time was finally here! Ella couldn't run in her princess shoes (which were too big so I stuffed kleenex in the toes- another Ella-proclaimed Mother Of The Year moment), but she waddled through the puddles as fast as she could as Aidan dashed up driveways ahead of her. Three houses down the street, Aidan had a huge hissy fit about wearing his poncho. Fine. Take it off and get soaked. One block into trick-or-treating, Ella was fussing because her shoes were soaked, Aidan was tired and whiny and wanted to go home because he was wet. Fun times. We headed home to regroup.

The kids changed into dry clothes, but Ella put her costume back on and insisted on going back out to trick-or-treat. Once Alex got home to man the candy station with Aidan, Ella and I went back out into the soggy Halloween evening. That girl was a trooper! She didn't complain once about anything. She walked the whole way and didn't ask to be carried. She took her doorbell ringing very seriously. She loved saying "Twick oh tweet!" to strangers. It was so funny. And fun. And super wet. I kept asking Ella if she was ready to go home and the answer continued to be "No!! Not yet!" I followed her soggy little poncho down the sidewalks of our neighborhood as her tiny purple princess costume sashayed underneath. She was a girl on a mission. She had been promised trick-or-treating, so trick-or-treating we would go until we dropped dead from exhaustion or hypothermia. Or sogginess.

Finally we came home and Ella took a bath to warm up. As I washed her hair, she declared I had "smashed" water into her eyes. (Instead of splashed. Made me laugh so hard.) She also said this had been the best day ever, and she had SO much fun! She asked when we could trick-or-treat again. 

Aidan was done with the whole Halloween thing early, which is typical for him. Ben and Jonah had a blast because they could go do crazy boy fun stuff with their friends while they trick-or-treated. Ella took Halloween very seriously and was excited to finally be able to ring doorbells and get candy. All in all, it wasn't a bad day. Jonah and Ben got home and spread their loot all over the floor in Ben's room. They did their yearly trade tradition- Jonah gave Ben all his candy with peanuts, Ben gave him non-peanut candy. I let them stay up a little late and organize their stash of sugar. When it was bedtime, of course there was fighting, but given the fact that A. fighting is normal at bedtime, and B. they had more sugar than normal in their bodies, this was to be expected. If that was the worst part of our Halloween, that wasn't too terrible.

It's interesting to see your kids changing year after year, and to look back and see how far they have come. Jonah and Ben used to be terrified of trick-or-treaters at the door when they were toddlers. Masks, weird costumes, it all reminded them to much of dreaded puppets. Halloween was very difficult for many years. But it's gotten manageable. I'm grateful for manageable. From worms to trick-or-treating, I have to keep reminding myself of the positive changes the kids are in the midst of. That way when hard times come, I can think about all the things that are going well and improving. Here's to worms and candy!