Showing posts with label gratitude. Show all posts
Showing posts with label gratitude. Show all posts

Friday, August 27, 2010

August Update




Well, it's been quite awhile since we updated our blog. It's also been about two years since we learned that Quinn has Fragile X Syndrome. About a year ago I wrote this post, reflecting on how our first year after the diagnosis had gone. I guess the main difference between this year and last year in terms of our adaptation is that it's softened - more background than foreground.

There are moments when we are acutely aware of Quinn's special needs, but most of the time, we're just doing what most people do. We work, do chores, visit family, go to the zoo, wipe our kid's snotty nose, enjoy family meals, go on road trips, catch movies when we can, do laundry, and do all of the gazillion other activities that make up our lives while trying to remember how precious, awesome, and fleeting all of this is.

Quinn's doing amazingly well. He is already doing things I wasn't sure he'd ever do, especially in those dark days just after the diagnosis. He is talking more. He can name many shapes, including "hard" ones like ovals, rectangles, diamonds, and crescents. He can count from 1 to 10. He can follow simple directions. He can sort of put his shoes on, sometimes, like when the constellations are aligned, though even then usually they are on the wrong feet. He can drink from open cups or from straws. He doesn't use a pacifier anymore. He sleeps in a bed, sometimes, all the way through the night. He gives great hugs. He is still very, very happy. Contagiously so. In short, he is a wonderful little boy.

We continue to be lucky to be surrounded by supportive family, friends, neighbors, service providers, and other wonderful people that make this journey possible.

By the way, the great haircut in the pics was just done today, by a neighbor/daycare provider who's been watching Quinn this week while his usual nanny's been away. She did it just because she likes to cut kids' hair. He hasn't had a cut this good, well, ever. And apparently there were no tears. So much to be grateful for.

Saturday, July 10, 2010

Why You Won't See Us at the Fragile X Conference



July 23, 2005





Chesterman Beach, Vancouver Island, British Columbia, Canada


This is where we spent our honeymoon...and where we will be on July 23. In the same hotel, in the same room we were in five years ago. I can't wait! Thanks to all the grandparents and Quinn's nanny for making it possible for us to take some time away from our little angel. We hope to make it to the conference in 2012!

Friday, January 1, 2010

Fingers Crossed for a Boring 2010

Happy New Year! We are pretty glad to say goodbye to 2009. It wasn't all bad, but there was way too much going on. In the 12 months of 2009:
  • Zac got laid off and got depressed
  • I left one job and started another
  • Quinn changed schools twice (one school closed, he "aged out" of the second school by turning three, and he began school district preschool)
  • Quinn transitioned from "early intervention" to "status 2" services through the regional center
  • In the regional center and school transitions, we had to changes social workers, occupational therapists, speech therapists, and physical therapists
  • We bought a house, remodeled it (with two contractors because we had to fire the first one), and moved into it. We lived with the remodeling for some time, including periods of having no kitchen, no furnace, unreliable electricity, and people and noise in our house for months.
Of course this is an incomplete list. We are so grateful to our friends and family for supporting us through all of this. We know we owe you! Adieu, 2009. May 2010 be totally uneventful!

Sunday, December 6, 2009

The UC Davis MIND Institute

On Thursday we went to the MIND Institute for a second visit. We feel very lucky to live so close to the MIND, as we know folks come from all over the world to go there. Quinn is enrolled in the "baby study" there, a study comparing the visual processing of children with Fragile X or Down Syndrome with typically developing children. Quinn was not too into the movies they show to assess visual processing; he much preferred the Yo Gabba Gabba YouTube Clips they show in-between the study movies to keep kids interested.

While Quinn was watching the movies and completing the Mullen Assessment, I met with other researchers to complete a parent interview (including the Vineland Scales and a genogram). After we'd finished with the research stuff, we met with Dr. Hagerman and her colleagues for a clinical assessment.

We came away with some helpful recommendations/ideas:

- We're going to try a little tiny bit of sertraline with Quinn to see if it helps decrease anxiety and encourage expressive language skills. We were offered this last year and refused, but as Quinn is still not really talking, and they have had some success with sertraline and few side effects, we're willing to give it a try.

- We can wait on moving to the big boy bed

- We can continue to move very very slowly on potty training (Quinn likes his Elmo potty and likes to sit on it and make Elmo talk, and that's about it)

- We are definitely right to be concerned that Quinn's not getting enough/the right kind of speech therapy at school. According to their assessments (which differ somewhat from other assessments Quinn has had), last year his expressive language was at 7 months, and this year it is only at 9 months...so lots of work needed there.

- A few sessions with an in-home behavioral therapist can help us avoid tantrums, which often involve Quinn's biting us and pulling our hair.

One thing we really like about going to the MIND is not just the specific helpful advice, but how everyone there, including the other families in the waiting room, "get it". No one gives us really stupid advice (as we commonly experience out in the world). No one stares or asks silly questions. It's just such a pleasant place to be. We are very grateful for the opportunity to meet with such knowledgeable, friendly people and it gives us hope that we have options for managing some of Quinn's special needs.

Monday, September 28, 2009

Ch-ch-ch-change

So much has been happening lately, I haven't had any time to blog. Some quick catch up:

- Quinn is three! His birthday was a week ago. It's a little hard to see my baby growing up, but I can't be sentimental for long while being attacked with hugs and smiles. He just glowed at his party as he saw many people he knew come over. It was his first birthday that he really enjoyed. I don't think he had any idea why people were coming over and giving him gifts, but he had a fantastic time. I am so grateful for his adorable, affectionate, joyous presence in our lives, and appreciate all of the things he has taught me. I love being Quinn's mom.
- We all had a sad, sad last day at his early intervention program, and sad, sad goodbyes with his OT, PT, and ST. As you can see in the picture in the previous post, he started at his new school, and the transition is about as expected. Quinn seems apprehensive when we drop him off and gets fussy towards the end of the (longer) school day. But according to his teacher, he is having some fun there with water and play doh and music, so it seems like he is adjusting.
- Based on a recent assessment, Quinn will most likely qualify for "status 2" from the Regional Center. This means we will still get some continuing support from the Regional Center, like respite and case management, which is a relief.
- Our move was stressful (see below), but it's great to be in our new community. I'm enjoying the beautiful September weather (in the Bay Area, September is a warm, low-fog, no-rain month) and exploring our new neighborhood. Quinn is turning into a real beach baby, and I'm delighted because I have many happy seaside memories from childhood (the Jersey shore). Our new street is also much busier than our old street, which may seem like a drawback, but to Quinn it's a benefit. He is spending a lot of time jumping and gawking at buses and trucks.
- We are having major contractor woes. I really hope we have a usable kitchen, a foundation, and a furnace soon. This has put a damper on the elation I might otherwise feel about our exciting new digs to say the least.

Tuesday, August 4, 2009

One Year After the Diagnosis


It's been about one year since we learned that Quinn has Fragile X Syndrome. It feels like we've lived a lifetime since the day we got that call. I feel proud that we've made it with our sanity (mostly) intact. We both have a few new wrinkles and some battle scars, but we've passed through what might arguably be the most challenging phase of this journey. Quinn's diagnosis has opened up unexpected opportunities. To love, unconditionally, an adorable, happy little person. To see the delight on his face when he uses his hard-earned pointing abilities to ask for things and to show us doggies and trucks. To appreciate the miracle of human development. To meet (in real life and online) strong, smart, funny, wise, patient, inspiring people. To revisit high school genetics and biology lessons. To learn a new vocabulary. To reflect on our values. To experience deep gratitude for the people who have supported us. To join the movement for increased access to resources and opportunities for people with fragile x and other disabilities. To feel strong as a family, as a couple, and as individuals. We are probably not done grieving, but it's good to remember that we're still here, laughing, crying, loving, and being.

Sunday, July 12, 2009

Update: bits and pieces from the weekend

- We gave Quinn a haircut tonight. Last haircut was at least two months ago. Now I remember why we kept putting it off. We tried to make it fun. We set him up in a chair with a movie and chocolate chips. We sang, we said comforting things, we made silly faces. But Quinn was traumatized anyway, and let us know with his wounded look, sobs, and screams. Makes me want to let him grow dreads. But the haircut was much needed, and he looks pretty cute. I'll post a pic tomorrow.
- Today Quinn experienced two of his favorite things: trains and dogs. It seems he likes these things better from afar. He cried on the commuter train and got totally overwhelmed and anxious at the dog park.
- I'm trying to walk more. In honor of my upcoming birthday, my body seems to be storing extra pounds. I really don't enjoy exercise, though walking is okay. Anyway, I was wiped out last night, but just before sunset I convinced myself to put on my sneakers and get outside. I was greeted by an unusually warm night (nights here, even in summer, tend to be brisk), and three rainbows. I'm taking it as a sign that it's worth it to get out, even when I'm tired.
- Quinn blew bubbles for the first time in the bath tonight. It was awesome. He's been working on blowing in speech therapy. He was really proud of himself, but couldn't repeat the feat.
- Quinn is signing a lot (same few signs - more, help, open), but still not really talking. I think he might have said "mama" today. I'm still not sure though if he was babbling or if he really meant it. That's what I'd like him to give me for my birthday.
- I'm really p*@#%! that we need to go through a three-hour evaluation to get the "status two" designation (e.g. continuing services from the Regional Center for people over age 3, which will include case management, respite, and other stuff). Quinn has a file at least a foot high, and has been evaluated by people with enough degrees to start their own university.
- I wish kindly strangers would stop asking my basically non-verbal child questions. It's weird and awkward for all involved. I guess it's time to order these cards (scroll down).
- What are you all doing for Fragile X Awareness Day, July 22?

Thursday, July 2, 2009

A wonderful present

Last night I came home to a new laptop, with which I am writing this post! My old computer was slow, possibly virus ridden, and very old and being a desktop, not at all portable. I've been looking for a computer on and off for many months, but felt overwhelmed by the choices and expense. So coming home to a fast, thin, light awesome laptop with a picture of us on the desktop is like a dream come true. Thank you so much, my wonderful husband!

Wednesday, June 24, 2009

A rose for my yummy

I was over at the new house today and I brought back a rose for Sarah.
It's on her desk and I already emailed her the picture. But I thought
I'd post it here so all our readers know how much I love her.

Monday, June 22, 2009

Enchanted walks

Lately I've been enjoying some enchanted walks with Quinn. He is in love with the world, and with his relatively newfound pointing abilities and characteristically adorable "Uhhhhh!" exclamations, he encourages me to love it, too.

Trucks! Buses! Dogs! The BART Train! Flowers! Other Kids!

I'm trying to walk with him more lately. Good for my waistline and my soul.


I hope LSFX readers don't mind the change in tone between Zac's posts and mine. I'm keeping an eye on him, as best as I can.

Sunday, May 10, 2009

One of the many reasons I love being a mother

is because of the sweet and funny things I overhear.

Right now, my husband and son are in the bathroom adjacent to our office. Quinn is taking his bath. Zac says "Quack, quack, quack!" Then Quinn says very merrily, "AAH! AAH! AAH!". This happens again and again.  Quinn only started imitating sounds in this way very recently. 

Quinn got a fever today (which he's since recovered from), and I still have a yucky cough from last week. Yesterday, my friend's child, who is just a few months older than Quinn, answered the phone when I called my friend's house. I was shocked that a child that age could answer a phone. I had assumed (really) that some other child was visiting her house for the day.

I am so grateful for the Quack Quack Quack moments that remind me to enjoy this time.

Saturday, March 7, 2009

Community

Zac and I run a casual group for parents of kids with special needs who live in our area. Today, with the nicer weather, we were able to move our group to a small toddler park, and it was wonderful to see our group "take over" the park temporarily. I like the group not only because it's terrific to meet other parents of children with special needs, but also because I like seeing children with special needs just hanging out together in public kid spaces, having fun, laughing, playing. Many thanks to the parents and kids who were able to come today. And to those who weren't able to come - we missed you and hope to see you next month!

Wednesday, December 31, 2008

Happy New Year


Happy New Year to all of our IRL family and friends, who've supported us in the first rocky several months of this journey. We made it through what we believe (hope) is the most challenging part of this experience, and we couldn't have done it without you. We're looking forward to 2009.

We also want to send a shout out to all the other parent bloggers of kids with Fragile X. Your honesty, humor, and wisdom has helped us to adjust to our new reality. Thank you. We hope to meet some of our new bloggy friends in Detroit in 2010 - or perhaps even sooner!

To all, we wish lots of health and happiness in 2009.

Saturday, December 20, 2008

Gratitude

Tonight while out at dinner, a woman sitting at the table next to us, who was waiting for a friend, spoke to us throughout our meal. She had clearly had a few drinks, or some rough living, and most likely both. She kept saying that she was envious and admiring of what we have - my husband's and my happy relationship with each other and with our son. She told us she had a son, now grown, and she wished he had grown up with a loving father, and that she had experienced parenting and living with a true partner.

Through her eyes, we were a Normal Rockwell painting come to life - a portrait of the functional family she wished she'd had. I feel like this woman gave us a great gift. We are often very preoccupied with our challenges, but in the big picture, we are very, very lucky.