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Monday, April 30, 2012

Putting out Fires

Today I had to take Aidan to see the psychiatrist as part of his intake/diagnosis process. He has been upset all day about this appointment, although he's met the psychiatrist on several occasions, and I explained he's a talking doctor who doesn't even touch you, let alone do anything that hurts your body! Aidan was skeptical. I also told him a little bit about why we're seeing the doctor. Because like his big brothers, sometimes Aidan's brain gets a little mixed up and isn't able to concentrate the way we would like it to. So like his brothers, the psychiatrist is going to give Aidan some medicine that helps his brain work better, like a super duper vitamin. Hopefully this will make school seem a teeny bit easier, and will help him concentrate a little more. 

On the way to the psychiatrist's office, Aidan sat in the back seat like a dejected little inmate on his way to his death sentence. I felt so bad for him. At one point he said quietly "Well, I hope I don't have to get a shot." I explained again that the psychiatrist wouldn't do anything to hurt Aidan, that he is just a talking doctor. With my other kids, I have a sixth sense about what they need at any given moment. I know whether a big hug or a sweet word will calm their fears. Aidan has always been a bit of an enigma to me, sixth sense-wise. I can't read him like I can read the others. Since he has so much difficulty with processing verbal language, talking to him doesn't really help him most of the time, it just makes him more irritable. And since he has such severe Sensory Processing Disorder symptoms right now, sometimes if you give him a hug, that sends him into an emotional tailspin. So it's really hard to know how to comfort my little boy. Which is something I hate more than anything in the world.

As we pulled into the parking lot of the psychiatrist's office, my cell phone rang. It was the school nurse-- big surprise! We almost made it a whole day without a call from her! She said Jonah was in her office. He had gone to the bathroom and was terrified because he had wiped his little tushy and found blood on the toilet paper. She had explained that this can be normal, etc., but he wasn't buying it from her and needed Mommy to reassure him. So I talked to him and told him the same thing the nurse had. Which made him feel a whole lot better. Another fire put out. Whew.

The psychiatrist went through his whole evaluation process with Aidan and verified that he had ADHD. He gave me instructions about what medication to try, and a prescription. We'll just see how it goes. I know from experience with Jonah and Ben that this process can take years. Figuring out which medicine and what dose will have the most positive effects with the least side effects can be a very very long and frustrating process. It's taken us FOUR YEARS of desperation to get Ben and Jonah to the point that they are emotionally and behaviorally stable. Most of the time. 

It's a strange feeling to know that tomorrow my little Aidan will take a medication for the first time to change the way his brain works. I'm so used to gearing up for that "first try" of meds, watching every breath my child takes to make sure he's not having an allergic reaction, that he's not going crazy, that the meds are working, or are they not's terrifying every single time I put a new med into my child's mouth. But when you've tried absolutely every single thing to help your child before you get to the point of meds, and nothing has made life measurably better for him, Alex and my decision is to try medication. So tomorrow I'll be walking on a bed of nails, anxious with each step about what Aidan's next breath might bring.

When we got home, I saw right away that Ella had a rash all over her face. She hadn't eaten or had anything to drink while we were gone, and nothing unusual had happened today to make her break out. I tried washing her face but that didn't help. I called the pediatrician to make sure that she wasn't having an allergic reaction to the antibiotics she started yesterday for her sinus infection. The doctor said the rash was probably not due to the antibiotics, to give her the next dose and just keep an eye on her to see if things got worse. Thanks a lot. 

Look at that tongue!

Then I got to pry playdoh out of all the crevices in the house where Ella had stashed little bits of it while I was on the phone with the pediatrician, trying to solve the Rash Mystery. That girl is quick! She can get playdoh into all sorts of strange areas! She knows how to work fast when Mommy's not looking. 

 At the end of this crazy day, I am thankful for Aidan and Ella's laughter as they play together in the new tent a friend graciously gave them yesterday. I am thankful for Ben who is out zipping around on his rollerblades with friends. I am thankful for knowing that Jonah has had a hard day, but is now resting in the sanctuary of my bed, watching TV, and that I was able to make all his worries go away. I am so grateful for this joyful chaos that is my life.

As I put Jonah to bed tonight, he mumbled through a mouthful of sleep, "Thank you for the way you take care of me." Now that, my friends, is why I love being the mom of my four special kids.

Sunday, April 29, 2012

Aidan's Socks

The other day, the school nurse called. This is a typical occurrence, so I didn't freak out. She always has at least one of our boys in her office. She said that Aidan's Kindergarten teacher had walked him down to see her because he was inconsolable and wouldn't tell anyone what the problem was. He was crying and distraught, but wouldn't, or couldn't, let anyone know how they could help him. He just kept saying he needed to come home.

I had one thing to tell the nurse-- ask Aidan if his socks are bugging him. So she did that, and sure enough, I heard him sniffle "yes" on the other end of the phone. I asked to talk to him, and we sorted out the sock issue. I had made him wear socks that morning because he had gym class at school that day, and needed socks for his gym shoes. The feeling of the socks was bothering him so much that he had a total meltdown. Couldn't concentrate. Couldn't speak. Couldn't function. All he could do was cry and hope someone would rescue him from the horrible feeling of his socks. 

I packed Ella up and we headed to school to bring Aidan his crocs. He took his socks and shoes off, changed into his crocs, and lit up the room with an Aidan Smile. He gave me the biggest hug, and asked quietly through his remaining tears if he could come home. I said no, school was almost over, and now his feet would feel so much better that he'd be able to stay and finish the morning. He agreed that now things were right with the world, and skipped back to his classroom.

If I hadn't known my son and his sensory issues so well, I might not have known that all that drama was just because Aidan had socks on his feet. It's the craziest thing, how just a pair of socks can make someone go nuts. So many times, the way my kids behave is a product of their sensory system not working the way it's supposed to. I'm always on the hunt for ways to make daily living more successful for our family; ways to calm overly sensitive nervous systems so that we can still do necessary things like flush the toilet, brush teeth, take a shower, wear jackets that are too 'puffy', get a haircut, visit a museum, play on the playground, endure the cafeteria at school, and sometimes...even wear socks.

Saturday, April 28, 2012

Here I go...
I've been wanting to do this for a long time. However, I'm about as technically savvy as our hamster, so it's a pretty daunting task to set up a blog! We have four beautiful kids who I am writing this for and about, and I hope this is a way we can keep family and friends up to date on the laughter, tears, milestones, and joyful chaos that we call "our life".

I always wanted four kids, a big family. Alex said he wanted three, and then we'd see. I thought it would be incredible to have a big, boisterous, joyful, chaotic, loving family. I wanted kids all around, toys spread throughout the house for me to constantly step on, someone always yelling "MOMMY!!!", and love love love. I knew my heart would grow and grow with each new baby, and the love we would have in our family would keep us strong through any obstacles life threw at us. Little did I know. 

We did have four kids. A big, crazy family. I'm always stepping on toys, there's always someone needing me, there's always a tushy that needs wiping, and there are always kids around-- sometimes ours, sometimes ours + friends. And there is always love love love. Our big love has kept our big family together and strong through 12 years of marriage and 10 years of ups and downs with our kids. It's gotten us through terrifying, dark moments. And our love has been part of our celebration when we have golden, perfect moments.

A little background to catch you up to speed: We have twin boys who are 9, Jonah and Ben. Jonah is four minutes older than Ben, he will have you know. They were born at 29 weeks, and have had to overcome many obstacles due to their prematurity. We'll talk about that a different day. The boys have both been diagnosed with Sensory Processing Disorder, Tourette Syndrome, ADHD, Bipolar Disorder, Dysgraphia, and anxiety. We have had years and years of therapies- occupational therapy, physical therapy, counseling, developmental therapy...and we are beginning to really see the benefits from all those hours of therapy. The boys are sweet, engaging, hilarious, smart, brave, creative, and kind. They also happen to have some special needs. 

Aidan is 6. His name means "little fire", which we thought fit his personality even when I was pregnant with him. He is a feisty little guy. He was born at 33 weeks with jet black, smooth, straight hair. All that smooth hair fell out and grew back blond and spiky, as if it knew it had to complement Aidan's spunky personality. Aidan makes friends wherever he goes. He is bright, sensitive, full of energy, thoughtful, loyal, creative, and funny, and his smile lights up a room. He also has some special needs and has had years of therapy to address those needs. Right now he gets weekly OT and speech.

Ella is 2. "Ella" means "complete", and also "fairy princess", which both suit her perfectly. She is the girliest girl you will ever meet, all tutu's and pink. She has completed our family in a way we only ever dreamed was possible. Ella is affectionate, passionate, intuitive, kind, and playful. She was born 7 weeks early, guessed it, is just going through the process of beginning therapy to address some special needs that are popping up. She is getting physical therapy to help her with some muscle/strength deficits, and occupational therapy to address her sensory issues.

This past week, Aidan was officially diagnosed with ADHD and Ella started therapy- OT and PT. A double whammy for Mama. Aidan already has the diagnosis of Tourette Syndrome, Sensory Processing Disorder, and some speech issues. It was a momentous week at our house. 

We go through times where things are even keel, the kids are healthy and their behavior is manageable. Then there are times that are painful and difficult to get through. This week was a hard one. Even though we've been through the whole process with Ben and Jonah-- the diagnosing, the medication trials, the doctor's appointments, the neuropsychological testing- it does not get easier. As I drove to the psychiatrist appointment for Aidan this week, I was surprised that I was feeling as sad and anxious as I was. I knew what he would be diagnosed with, I knew what the psychiatrist would say. But I was still dreading it. Dreading the whole thing. Dreading the 'officialness' of it. Of what it means for Aidan, the meds he will have to try that might have side effects, the testing, the psychiatrist appointments, rallying his team of therapists to have support for a special ed plan at school, going through that whole process with the school...whew. I'm tired just thinking about it. I felt, driving to the psychiatrist that day, the same way I feel every time I have to go to the dentist (which I have a huge phobia about), I just want to run away. I tell Alex this EVERY time I have to go to the dentist- let's just run away!! I want to leave and forget about this and just not do this. So I cranked up my music, and tried to sing away my blues, and force myself to drive the miles to the psychiatrist's office. My blues didn't disappear, but I did make it to the doctor's office. Where yes, Aidan was officially diagnosed with ADHD. On top of Tourette's. And whatever language disorders he has that we haven't quite figured out yet. 

Ella is always jealous of her brothers, because they get to go play with the fun therapists at our clinic, The Therapy Tree. She always has to wait for them in the waiting room. We're there a lot every week, so she really gets sick of waiting. She was thrilled this week when a therapist came to get HER to play!! It was bittersweet for me, watching her bop down the hallway, piggy tails happily bouncing, side by side with her physical therapist. I felt sad because this is another milestone- another one of our kids needs therapy. But I also felt so hopeful, because I know what this therapy has done for my other kids. The therapists who work with our boys are angels sent straight from heaven and put on this earth specifically to touch our family's lives. I'm convinced of this. They have changed our lives so drastically in so many ways, I don't have words big enough to thank them. Every single week, they show up, they're happy to see our family, they are full of ideas for how to make our lives better, how to strengthen muscles, how to calm rages, how to brush teeth...they are amazing and we are so blessed to have them in our lives. So I know what Ella is in for-- hope. Although it's sort of a sad thing to have to need therapy, it also makes Ella's future so hopeful. And she was right to dance down that hallway with her new therapist. This therapy thing is something to dance about. 

When you have kids with special needs, you obviously hope your other kids won't have any 'special' issues. And when they do, it just makes you sad. Just sad. For how hard their life is and shouldn't have to be. So whenever I've faced struggles like these with my kids, I let myself grieve and mourn. I cry if I need to, I let the sadness take over for a little while. I wonder why my child has to struggle. Why life has to be harder for him than it should be. All the while knowing that through my sadness I will fight like hell to make sure my child has everything he could possibly need to make his life easier, better, safer, more enjoyable. I let my soul cry for as long as it needs to, and then I stand up and fight for my kids with every fiber in my being. I've learned that you can fight and advocate even when your heart is broken and your soul is crying. You might be fighting with tears rolling down your cheeks, but you're still there, standing up for your sweet babies like no one else can.

Four incredibly brave, resilient children. Four kids who have special needs. It's a daily adventure, and it's always joyfully chaotic at our house.