Showing posts with label milestones. Show all posts
Showing posts with label milestones. Show all posts

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!

Tuesday, June 8, 2010

You Can Do It!

I said this to Quinn the other day, while asking him to take his own shoes off. After the phrase came out of my mouth, I realized that I rarely tell him, "You can do it," and I felt a little guilty and sad. I am pretty sure that if Quinn were typically developing, I would have started saying this at least once a day a long time ago.

I think Quinn will teach me a lot about how to empower a person with a disability as he develops. He already has many skills, and can do so many things. But I rarely encourage him to be as independent as he could be. Sometimes it's because we are in a hurry, though admittedly, it's probably less often that we are in a true rush, and more often that I am just impatient. I need to take the time, sometimes a very loooong time, to wait for him to do more things for himself.

Many of my friends with typically developing kids have already developed the patience to wait for their kids to dress themselves, feed themselves, get in and out of car seats themselves, etc. But often this is prompted by the kid who says (or screams), "I can do it!" Quinn does not yet do this very often. He is perfectly happy to be taken care of, so we have to take the initiative to encourage him to do more for himself.

Friday, April 16, 2010

Sibling rivalry

We bought this doll for Quinn awhile ago, just because I thought it was cute. It makes gurgling and drinking sounds when you "feed" it with the attached bottle. He has not really been interested in the doll.

Tonight I was playing around and holding the doll like a baby and feeding it. Quinn grabbed it from me and slapped it and said "bye bye"! I held the baby again, just to see what he would do, and he repeated the grabbing, hitting, and "bye bye".

It's fun to see Quinn exhibit developmentally "normal" behavior. And I guess it's good we have no immediate plans to give him a sibling.

Sunday, February 28, 2010

Look Who's in a Big Boy Bed!


We didn't intend to start putting Quinn in a Big Boy Bed just yet. But last night, he was crying at bedtime, so I took him out of the crib and figured I'd read him an extra story. I was very surprised when he walked over to his tiny toddler couch-futon, opened it up, and laid down! So for nap this afternoon and for bedtime tonight, we just put him in it. He seems very happy! This particular Big Boy Bed will have to be temporary. There's no way to wash it as it's just a piece of novelty furniture (looks kinda like this, with starfish, not Thomas), and it's too tiny for one of us to lie down with Quinn if he needs some extra cuddling when he's sad or sick. So this week, we'll be getting him a full-size futon to put on the floor. It seems like Quinn's just growing by leaps and bounds lately. He's really not a baby anymore. Well, except for that binky. But who knows, maybe he will surprise us and just toss it in the garbage tomorrow.
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Saturday, February 13, 2010

Excuse me while I brag about my kid some more

Quinn has had an amazing couple of weeks. Potty training continues - he's been doing #1 all week in the potty at home and at school, and just this morning, he did a "real" #2 at home! He still needs his pull-ups, and doesn't consistently ask to use the potty when he needs to, but we are delighted at his interest and willingness to use the potty at least sometimes.

He's also talking A LOT. Saying "watch" because he like's Zac's new watch and "banana" even though he won't eat one. I'd say he has about 25 words now, most of which he does not say consistently, but he is really coming along.

So very excited to see all of his progress. We're off to the toy store to get the little guy a special treat.

Sunday, February 7, 2010

Potty talk

I'm almost too tired to blog this, so I'll keep it short. Besides, this isn't something you'd want too much detail about. Quinn did a tiny (as in, you'd need a magnifying glass) #2 in the potty today. We weren't thinking he was really ready, but he was showing interest, which was fine by us. So it was a complete surprise. But it was definitely intentional, as evidenced by Quinn's giant smile of pride at his accomplishment, even before I offered praise and a chocolate chip. I am SO proud of my little guy.

Friday, January 22, 2010

Talking!


Here's a list of all the words we've heard Quinn say over the past couple of weeks:

- Nyet! (no)
- Booook
- Bye (sometimes said to people who've just arrived at our house)
- Dada
- Ma (Mama)
- Car
- Muh (more)
- KiKi (Kitty)
- Go!

And lots and lots of speech-like babbling. We are so proud of our little man!

Saturday, December 12, 2009

"Da Da!"

Quinn unambiguously said "da da" and pointed at me this morning. He was holding one of his favorite books and wanted me to read it. Tonight he said "da da" a few times when he wanted to be carried when we were looking at the Thompson Avenue Christmas lights.

It was an extremely rare moment for me. I felt so proud of Quinn and so loved by him. It made my heart so happy. But there was melancholy too. I thought to myself, "So this is what those other parents are going on about all the time. This is the love and joy that they're always talking about. This is what sustains them when things get hard, as they inevitably do. No wonder they gush so much." I wonder how much easier parenting would be for me if I got those moments more often. I wonder how much more often I would get them if Quinn were more "normal."

When Quinn said "da da", I felt like I could endure endless sleepless nights, nurse him through an infinity of sick days, wipe a thousand runny noses and change a million poopy diapers with a smile on my face. All it took was a little recognition, a little declaration of his understanding that he knows who I am. Why are those words so important? I know he loves me. I see his face light up when I pick him up from school, I see the laughter in his eyes and heart when I play with him. I know he recognizes me. But somehow it isn't the same as when he says it. Why is that so important? I know part of it is that we've waited so long for him to speak, and to see speech finally emerging is like warmth on a bitter winter day. But this is different than "go" or "ah duh" ("all done"), as wonderful as it is to hear those, or see them as signs. It's ME. I'm "Da Da". What he said means me. And knowing my child means me; nothing has moved me the way that knowing has moved me. I suppose it's like the first time you realize that the person you're in love with loves you back, but it's along a different, quieter dimension.

Well, of course I tried, with mixed results, to get him to say it again and again and again. But Quinn is not one for command performances. I'll have to be patient and let "Da Da" come to me as a gift. I love you, Quinn. Da Da loves you.

Monday, October 19, 2009

Yay! Drinking from a Straw

At his new school, Quinn learned how to drink from straws, even skinny juice box straws. It is an awesome superpower! Now we can go almost anywhere in the world, and Quinn can drink, even if we don't schlepp around his kiddie cups. Woohoo! One less item in the diaper bag!

Quinn has been able to drink from super fat straws for awhile, but he hasn't had the ability to close his lips tight enough for a normal straw. This has been an early intervention goal for a loooong time, because I guess being able to close your lips is essential for making some sounds. It has also been a hygiene goal because having lip/mouth control helps to hold back the drool.

Quinn has also been able to drink from open cups for awhile, but the risk of spillage has been too great to take advantage of that super power while in restaurants, unless we order an extra cup and poor a tiny amount from a larger glass into the extra cup. But that can be rather tedious over the course of a meal.

So we are delighted with the straw drinking. One of the things I enjoy about raising a special kid is taking pleasure in all of the little hard-earned accomplishments.

Friday, August 14, 2009

Go Quinn!

So, back in April, I posted about how I was "grateful and a little depressed". Grateful for the fabulous new school we enrolled Quinn in, and depressed about the evaluation recently completed by that school, showing, among other depressing things, that Quinn's cognitive level was only around 8 months old. I just got a new eval today, and all I can say is GO QUINN! And GO EARLY INTERVENTION TEAM! This new one shows Quinn's cognitive level as 18 months. What a dramatic difference. We've noticed it at home, but of course hadn't put a developmental age on it. I am really proud of my little superstar and all the work he's done. The report notes what a good student he is, and how much he loves to be praised for a job well done.

It looks like language is still lagging behind, at 10 months, but based on these results, I feel more confident that he will continue to progress...as long as we can keep him in an educational setting that suits him. That's a story for another post. Despite our terrific IEP process, we're facing some hurdles with finding an appropriate pre-school program for our little man.

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.

Tuesday, July 28, 2009

Roar! Shhh.

One of Quinn's favorite books is How Loud is a Lion. We read it A LOT. This morning, when he got up at his usual earlier-than-should-be-legal hour, I put him back in his crib with some books and told him that mommy and daddy needed some rest. We heard some babbling sounds, and then, about twenty minutes later, we heard a very cute and unmistakeable "ROAR!" and then "Shhhh!" - the end of How Loud is a Lion.

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

Life is good on the bus

Quinn's awesome school is a on a campus with lots of programs for folks with developmental disabilities. Every morning when we drop him off, vans are pulling in full of people going to day activities on the campus. As we've noted on this blog before, one thing Quinn has in common with many boy toddlers his age (we are always very happy to be "normal" - a way to bond with other parents) is his love of transportation vehicles. So when he sees the vans dropping people off, he is VERY excited.

The other day I was dropping him, which I don't usually get to do because I'm often off to work before his school begins at 9. But the other day I had the pleasure of doing the drop off. As soon as we got out of the car, one of these vans pulled up, and Quinn, absolutely delighted, made joyful utterances and started waving. On this particular day, all of the other people on the van, the adults with developmental disabilities, started waving, too.

For a moment, Quinn and these adults were looking very happy as they seemed to take one another in. And in that moment, I almost heard a voice (not really - don't worry no voice-hearing going on here) say, "Don't worry, Mom. Quinn is going to go to a campus like this one someday when he's big, and he will love it! He'll hang out with friends, swim, do art, and learn job skills. And he'll wave at cute little boys."

I have to admit, sometimes when I see the adults with developmental disabilities at this campus, I feel a pang of anxiety or grief, thinking, "Will Quinn be like that when he is grown-up?" And I know he will. I just do.

I still think he will be "like that". But for some reason on that day, I realized that is totally ok. I think he he will have an enriching, fun, happy life. It may not be the life I expected, but I think he will be absolutely fine with it, and I will be happy seeing him happy, riding the van to wherever he may be going.

Sunday, June 7, 2009

Shopping may never be the same again

Today on one of our early morning walks to the coffee shop following a 5:30 am wake-up (when I'm really really tired it's a very early morning drive to the Starbucks drive-thru), Quinn reached an important new milestone. He can shop. And if you can shop in our society, you can get along pretty well.

I was sleepily standing in line waiting for coffee, when I saw his cute little finger coming out of the stroller, pointing at the goodies in the display case! Then he signed "more" several times! It wasn't entirely clear what he was pointing to, so though I was tempted to buy him the entire jar of giant chocolate chip cookies to celebrate the occasion, I got him a piece of pumpkin bread.

I guess the days of being able to slip quickly in and out of a toy store to get something for another kid's birthday without getting something for Quinn are over, but at least for awhile, I don't think I'll mind at all.  All of these little milestones are all the more joyful because we wait so long, and we know how hard Quinn's "team" works to help him progress, and how hard Quinn works to learn new things. He is so proud of himself when he accomplishes a task, he applauds for himself. 

Our First IEP

On Friday, we attended Quinn's first Individualized Education Plan (IEP) meeting with the school district. This was a meeting to discuss Quinn's eligibility for special education services, the transition from early intervention to special education, and the specific goals and services provided to meet those goals. Quinn is not turning three until September, but our school district wanted to have the initial meeting now, before folks leave for summer vacations. I'm a plan-ahead type of person, so that worked well for me.

Years ago I attended IEPs as a support person for others in a professional capacity, and so I know they can be contentious meetings. As we told friends and professionals about our upcoming IEP, they advised us to make sure we knew our rights and be prepared to advocate.

I'm happy to report that the meeting went very well and was entirely drama free. What a relief! And they offered to give Quinn everything we'd want him to have (except PT, which they admitted they should have evaluated for, and will be evaluating for asap). 

There were, however, a few odd/sad moments.

First, the odd moment. At the very beginning of the meeting, when they asked the school psychologist to report on Quinn's eligibility for services, she seemed tentative as she said, "Quinn has significant global developmental delays which do qualify him for services [pause] which is consistent with [pause] a diagnosis of [pause] mental retardation." Then everyone in the room looked at Zac and me, seemingly wondering, "Are they gonna cry?" So I just said, "Yeah...it's not a surprise." And the meeting continued.

Then a couple of sad moments. The first goal they wrote for Quinn, which he is to accomplish over the next year, is to make a chain consisting of X number (can't remember) of large beads on a thick rope. Quinn has had big beads and a thick rope in his toy collection for about a year (thanks, Grandpa Bill!). He plays with them often, and can sometimes get one bead on. His therapists also use beads like this regularly with him. The sad part is that not too long ago, we had another couple over, and their son, who is several months younger than Quinn, made a long necklace with the same beads in about 15 minutes, after his parents showed him just once how to string the beads. They said he did not have beads like this at home and had probably never played with beads. So, the idea that after a year of instruction Quinn would be able to make a bead necklace successfully on 75% of all trials was a little depressing.

Also, though there were goals related to speech, none of them actually stated that Quinn would, in fact, speak. Again, this is over the next year. The goals were about making pre-speech sounds, improving imitation skills, drinking from a straw (important for mouth control), etc. But no actual talking appears to be expected.  I do think Quinn will be talking more in the next year. As noted before in this blog, he does say a few things, (like "moh" for more, and recently animal noises, and he is signing several words now, too). But it's just kinda sad that he's not so far along that it didn't seem appropriate to have a goal stating that he'll speak X number of words over the next year.

Wednesday, May 20, 2009

Status updates

My posting to this blog has suffered recently, as I've been using Facebook as my primary venting/griping forum. For those of you not there, I'll transcribe some of my recent Quinn-related material. In chronological order:
Zachary Drake is with sick baby. :( How can I treat Sarah like a princess? Happy Mother's Day all (including those who are trying/hoping/attempting to convince hesitant partners!).
May 10 at 8:03am · Comment · Like

Happy Mother's Day Sarah! Quinn & I love you very much. You are so good to both of us :) :)
May 10 at 9:41pm · Comment · LikeUnlike · Share

Zachary Drake has read "Big Red Barn" far too many times today. Fortunately, I think Quinn will be able to go to school tomorrow. I was not optimized for extended bouts of special needs childcare. (Is anyone?)
May 11 at 6:17pm · Comment · Like

Zachary Drake needs D&D night like this planet needs to control greenhouse gas emissions.
May 12 at 4:57pm · Comment · Like

Zachary Drake another 4am wakeup. Resenting your own child makes you feel like crap. He's awfully cute though.
May 13 at 5:54am · Comment · Like

Zachary Drake Quinn built this tower with some guidance from his physical therapist. His skills are improving!

Zachary Drake So looking forward to watching episodes of "In Treatment" with my Yummy tonight.

Zachary Drake Quinn watches the garbage truck drive away

Zachary Drake Quinn's not napping because of gardener noise. I really needed that couple hours. But onward I trudge!!
May 15 at 2:29pm · Comment · Like

Zachary Drake got to see "A Streetcar Named Desire" last night. A play! How grown up!
May 16 at 7:04am · Comment · Like

Zachary Drake God, it feels so good to do real work. The show is largely intact in my mind and just comes pouring out if I'm properly focused. I just need to clean up a few spots and make sure I'm in proper mental and physical shape for the performance.
May 16 at 1:26pm · Comment · Like

Zachary Drake is buzzed from a very strong mojito. Yay parents' night out!
May 16 at 7:18pm · Comment · Like

Zachary Drake Quinn started making noises around 3am, and then really woke up around 5am. I've been walking and driving around with him for an hour now. Somehow I'm ok.
Sun 6:06am · Comment · Like

Zachary Drake Strolling through the mall at 6:21 am with Quinn, sleep deprived
Sun 6:27am · Comment · Like

Zachary Drake Quinn has a cold and a cough, so we're keeping him home. Another much needed day snatched away from us. God this parenthood thing can suck sometimes. Now I gotta change his shitty diaper. Oh, did I mention he's permanently mentally retarded? Sigh. (I apologize for the whiny nature of my recent status updates. I will return to political commentary and narcissistic self-expression as soon as possible.)
Mon 7:14am · Comment · Like

Zachary Drake Quinn took no nap today, but by stuffing my face with BBQ spare-ribs and fresh lychee nuts I've managed to stay sane.
Mon 4:41pm · Comment · Like

Zachary Drake Is ready for his show tomorrow morning!!!
Mon 10:32pm · Comment · Like

Zachary Drake got a partial standing ovation today. Happens with Dust Storm a lot: some people thing it's great and stand right away, some feel compelled to follow along, but it doesn't quite reach the tipping point where everyone feels they have to stand.
Yesterday at 4:46pm · Comment · Like

Zachary Drake Quinn's nose is still running like a river. Another day home from school. Another few hours I thought were mine snatched away. Another entry in the ledger of resentment. God this is hard.
8:42am · Comment · Like

Zachary Drake both of Quinn's nap attempts were ruined by bodily functions. What must I do to propitiate the gods?
2:32pm · Comment · Like
Reading these over, I'd say it's a decent sampling of the ups and downs.