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I missed a birthday or 4 and so much more

I’ve missed some birthdays here and there. I missed telling you about my boy and all that is going on with him. I missed telling you about how scared we were for a while. I missed writing things down.

I’m not sure that I can stick with it, but I can try. I have to start somewhere and why not here, with a belated birthday wish to my very own littlest.

Molly turned 6 on the 8th of August and continues to be a spot of sunshine in our lives. Even when she whines and cries, we can’t help but love her little spunky personality. Her 1st grade teacher just loves her and just told me this morning how glad she is to have her in class.

Gracie and Slater are gearing up for their b’not mitzvah in February with daily Hebrew practice and mitzvah projects. Gracie is collecting quilts to donate them to the Phoenix Children’s Hospital and Slater is collecting ponytails to donate to Children With Hair Loss. They both have blogs related to their projects and are required (by us) to write a new post every week. They really need to ramp up their marketing. We hope to print ads and take them to quilt shops and hair salons this weekend. Check them both out!

Gracie’s Stitchvah Mitzvah

Slater’s Hair-Raising Mitzvah

They’ve done all the writing, linking, and research so far and I just want to get the word out there since I know the power of the internet. Pass it on if you have the chance!

*I’ve struggled with whether or not I wanted to talk about this, but I need to. I need to show people that life can get better. If you know something is wrong, you can ask for help. While so many people deal with so much more difficult things when it comes to mental health, this is our story so far.*

Finney. My sweet boy, Finney. After a rough start to 2nd grade last year, when he changed schools, Finney’s teacher asked us about some of his atypical behaviors. I had always noticed that he was not a typical kid, in many ways, yet we had hoped he’d grow into a life where he could succeed without all of his ups and downs. He’s sensitive, emotionally and physically. Warm baths were deemed HOT!, a drop of water spilled on his shirt meant he needed a new one, and temper tantrums continued into his 7th year. He was constantly on the move, physically and mentally. He exhibited pressured and excited speech, goofiness, and shutting himself into his own world. He also displayed palilalia, which was noticed by his older sisters at the dinner table. Two years after they noticed it, Ben still hasn’t ever seen him do it, but I recently caught it on video when he was being silly. Palilalia is the repetition of one’s own words after you’ve spoken, typically the last phrase, and he always whispers it. He didn’t know he was doing it, but we girls saw it.

We started with our pediatrician who gave us a few recommendations and decided to see a well-known pediatric neuro-psychologist, Dr. Nick.

After speaking with us for about 45 minutes, he threw around words such as High-functioning Autism, Sensory Processing Disorder, Pediatric Onset of Mood Disorder, ADHD, and Frontal Lobe and Executive Function Disorder. He didn’t attempt to diagnose any of these disorders, but said that other doctors may use these diagnoses on him. Our doc didn’t really like using Autism and SPD because they can be so broad and not really tell the whole story and he agreed with the new recommendations from the Nation Institute of Mental Health that the DSM-V was too broad and didn’t always give the right answers to diagnoses. Consequently, the NIMH is in the process of writing their own diagnostic volume. He then had Finney come in and take a morning’s worth of tests with one of his assistants who was struck by Finney enough that she texted the doctor during testing that he had to meet him before we left that morning. Finney is endearing and hilarious, and she wanted the doc to see how awesome he is. When we went back a few weeks later for Dr. Nick’s evaluation, he spoke about the test results, noted that Finney is brilliant and funny and charismatic, and then 30 minutes into it, he blew us away. He said he had a hunch that Finney might be Bipolar.

I’ll let that sink in.

Bipolar.

My sweet and happy boy, who tends to temper tantrum might be Bipolar.

Dr. Nick actually said he wanted to rule it out based on how Finney tested on a certain battery of tests. Kids who are bipolar test one way on a series of tests and kids who have ADHD test a different way. Finney fit into the bipolar group on every test. There’s also a family history of bipolar disorder and schizophrenia in our families, so Dr. Nick wanted to err on the side of caution. He referred us to a child psychiatrist, Dr. B, who has been head of Psychiatry the Phoenix Children’s Hospital and I was in a daze until we met with him.

For the next three weeks, I read everything I could about pediatric onset of Bipolar 1 Disorder. There isn’t a whole lot of info out there since so few children are even diagnosed, but I checked out every book at the library. While I saw a few symptoms that Finney shows, there were much more scary things that we never saw. He isn’t violent, he doesn’t talk about death and morbidity, he doesn’t have violent dreams. So much told me he isn’t bipolar, but I had a nagging feeling that maybe he was.

After talking to Dr. B for about 30 minutes, he said he did not think that Finney was Bipolar. My shoulders got lighter in that one sentence. I could feel like life would move on the way it was supposed to and I wouldn’t have to constantly be worried about him. Pediatric bipolar is so much scarier than adult onset. It means so much more for the person who is bipolar and their family and friends. I wouldn’t have to worry about every phone call that came in. I wouldn’t have to worry about his safety and ours. I could breathe.

Finney has Basal Ganglia Dysfunction. Another way Dr. B described it is ADHD without the attention deficit. Tourette’s and OCD are also related and the actual diagnose he gave is OCD, although Finney is not anxious and does not exemplify the typical case of OCD. There is little information out there that truly describes Finney’s case, but I can piece together some info from some sites that do connect all the dots for him. One of the hardest parts about all of it is explaining what’s going on with him to his teachers, nurse, camp counselors last summer, ballet teacher, jazz teacher, baseball coach, etc. since it isn’t something as simple as ADHD, which most caregivers know. I’m still in the process of writing up a manifesto about Finney so I can print it out and give it to all of the grown ups in his life.

A side note about our psychiatrist: Dr. B was the first doctor that Dr. Nick mentioned, so we took it as a sign that he was the best. Dr. Nick gave us the caveat that some people have a hard time clicking with Dr. B and while I don’t love him, I do think he’s a fantastic diagnostician. He mentioned at our first appointment that he’s been doing this long enough that his brain is an encyclopedic volume of psychiatric knowledge. I don’t think he’s warm and fuzzy, and have had one person tell me that they think he’s on the spectrum, but I want someone who will treat my kid we’ll not be my buddy. I believe him when he tells me what’s going on in my kid’s head and don’t care about anything else.

It’s been 7 months since his diagnosis and life couldn’t be better for all of us, especially Finney. At one point in the diagnostic process, he asked me, “Mommy, why do you think I do the things I do?” It broke my heart to hear him question his own behavior, especially since he truly didn’t understand why he was doing what he was doing! He was compelled to blurt, flap, always move, freak out, etc. because his brain wouldn’t turn off. He still struggles with some behaviors and his teachers are amazing in helping him succeed in the classroom. He sits on a sensory cushion and he has sensory objects in his desk so his hands can always have something to do. He can finally realize his full potential because we can understand him a little bit better.

He has come a long way and we could not have done it without his 2nd grade teacher. She saw in him, what we saw, but knew couldn’t come out without removing this hurdle. She saw something in him that she knew she could help get out. Something his previous teacher and school wrote off as normal, but I knew was not. Something amazing that I’ve always seen and I’m so glad that he can see the light I’ve always seen in him. I’m so happy that he can light his own spark and show it off to the rest of the world instead of displaying his quirky and negative behaviors that marred life for him. It was a long haul, figuring out exactly how to treat him, but the last few months have been so great and he can feel it. He’s grown so much and has been able to accomplish so many things that he couldn’t do just one year ago. My happy, sweet, brilliant boy is back and better than ever and I’m so happy for him. For us.

For him. Always for him.

*If you need help, if your kid needs help, there are people out here just like you searching for something, too. A helping hand, someone who will recognize that everything is not hunky-dory and that things can get better. We had so many people tell us that it was a phase that all boys go through and I knew it wasn’t just a phase. I’ve worked with kids long enough to know that when you ask a kid to brush their teeth and they scream down the hall and bang on their bedroom door, chipping the paint on a regular basis, they aren’t experiencing a normal or typical behavior. We had teachers, school counselors and principals write us off, and we’re thrilled that we have found some answers for him. Answers that work. Answers that help. We’ll continue seeking answers as he changes and his brain grows in different ways, but we’ll never stop doing everything we can for our boy.

Winner of Paint!

After careful placing of numbers in blank boxes on the computer screen, and then completely forgetting to post, the winner of the charm pack is #12, Melissa Quinn. I’m sending an email to you for shipping info! I hope everyone can get their hands on some of Carrie’s new fabric!

The worst blogger ever,
jenny

Paint on the sidewalk

Carrie from Such Designs is at it again with her second fabric collection for Windham Fabrics. Her newest beauties are reminiscent of the first collection with some beautiful new additions that encompass her Paint Collection.

Gracie is collecting quilts to donate to Phoenix Children’s Hospital for her Mitzvah Project and I promised I’d make her the first quilt if she picked out a pattern. I made a simple quilt modeled after Pippa Quilts Sidewalk Quilt that she found on Pinterest. I have made one of these out of the Paint Collection for a benefit for Eric’s son that’s next weekend and the squares are all cut for Gracie’s quilts.

I call it Painting the Sidewalk and really love this quilt design and the fabrics I got to play with. I had a lot of fun working with the new fabrics and have to say that my favorites were the Schmutz pinwheels, Spackle paint chips and Periwinkle weave. I didn’t take a picture of the back, but I used the Periwinkle weave which is unbelievable in person and attached some periwinkle solid to the bottom. Made for a lovely effect.

To be entered to win a charm pack of each fabric from paint Collection, go to my Gracie’s Stitch-vah Mitzvah blog and leave her a comment of encouragement, then come back here and leave me a comment. (I know, I know! Lots of work, but it’s for a good cause!) I’ll pick a random winner on Monday night (Finney’s birthday!) at 10pm PST. Gracie’s blog a very young blog with few posts, but her Bat Mitzvah isn’t until next February, so she has time to pull it together! If you want to make a quilt for her, let her know!

The Eulogy I never wanted to write.

*Last week, I lost one of the most beautiful people I have ever known in a horrific and senseless tragedy. We’re still in shock, we’re still sick, and we have no answers, but I made it home and had some words to share about our Eric. I want everyone I know to know him, so I’m shining his light in your direction.*

People say that one of the worst things about growing up in a small town is that everybody knows everybody. I think it’s one of the best things, but I tend to look on the bright side and I don’t live here anymore. My theory, though, about it being one of the best things is completely proven by the love we see here tonight for Eric, and this is all because of him: his light, his smile, his love for life and his family, born and chosen. When we graduated high school 20 years ago, my address was Eric’s address, my house was Eric’s house and my parents were Eric’s parents. He was my brother.

Eric

If you ever hear someone say you don’t get to choose your family, be clear that we know that’s a damn lie. I honestly don’t know very many people who are lucky enough to be a part of a family like ours. It just doesn’t exist, not a family this big, that is rooted, strong and deep, in a love created many moons ago, before we truly knew just how big and beautiful and strong it would be and what it would all mean to us. No matter where we put our heads at night, we will always know that we have each other, even without Eric: our brother, our lover, our court jester, our king. We still have each other.

Eric

I’m not sure if it’s helpful or hurtful to know that one of Eric’s epic bear hugs would make me feel so much better right now. He gave the best hugs. He meant them with every fiber of his being. He wanted every cell in your body and your very soul to feel each ounce of his embrace. The knowledge of that will carry me forward. The memories I have will have to do.

Eric

One of my favorite memories that I share with a few of you is a night when we got stuck in a cave at Devil’s Prop, in what we thought was a thunderstorm. By the time it cleared up and we headed to Biggie’s where the power was out, we realized it wasn’t a mere storm, but that we’d been stuck in a tornado. We didn’t have time to be worried while it was happening, because Eric made it fun. He lit a fire and danced, we laughed, we loved. Eric was like that: a light in a storm, the sun in the sky. The world may be dimmer without Eric, but I’ll carry his supernova until we meet again in the stars.

Good night, my darling king.

Eric