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.

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.

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?

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.

Grateful and a little depressed

We just received yet another developmental assessment. We've read quite a few in the past year, written by Quinn's many village members. This most recent one is by the wonderful folks at Quinn's amazing new super-intensive early intervention program. This is a pretty thorough report, discussing each area of Quinn's development. And these folks know what they are talking about because they spend hours with Quinn each day. 

Reading about what these folks are working on with Quinn, and how they are doing it (with a combination of TEACHH, PECS, ABA, and Floortime!) gives me an extraordinary appreciation for their work. I've observed Quinn in the classroom there, and the patience, knowledge, commitment, and professionalism these folks exhibit is stunning. So that's what I'm grateful for.

Now for the depressing part. Quinn is really delayed. Assessments are an imperfect measure, and they all differ, and the instruments don't capture all the strengths, and the reliability and validity may be questionable and who cares anyway about the numbers, and yada yada yada. But it's just a downer to read that your 30-month-old has the cognitive development of an 8-month-old.  And even the areas of relative strengths show a 50% delay, so around 15-16-month level. Just not that fun to read, really. None of this is a shock, but well, it always is, a little bit, to see it in black and white, after all the work, all the "more" games and putting blocks away one-at-a-time.

And even though I am blown away with the patience of the folks working with Quinn, that also makes me a bit sad. Because frankly, I just don't have the patience to to exchange a PECS card for a Pepperidge Farm goldfish 30 times at every snack, like they do at his program. (Quinn eats a lot of goldfish - yum!) Even if I were not working, I probably wouldn't do it, which makes me feel a little guilty and inadequate...and grateful that Quinn has people in his life who will do that every day for a few hours.

Time for a transition

So we had our first meeting with the school district folks today. We're not really looking forward to this transition since we feel like we're finally settling into a nice routine, we like all of Quinn's providers, and he is doing really well. But he is 2.5, and so The Transition Must Go On.

The school district folks were nice enough, but it was pretty weird how they kept talking about how Quinn needed to be "assessed" to determine his "needs" before we could even begin to discuss service options. Haven't enough public funds been spent on assessments for our child? We really know quite a lot about his "needs" and have stacks of paper to prove how knowledgeable we are.

Part of what's frustrating is that because Quinn's issues are primarily developmental, not physical (if you ignore the absence of FMR1 protein, hypotonia, macrocephaly, and increased risk for seizures and mitral valve prolapse), people always feel they need to "assess" for themselves. If Quinn had no legs, people would simply say, "Of course he needs some help getting around." But because he has no/little speech and a host of other less visible issues, he always needs to be "assessed". Even though to me not being able to say "mama" at 2.5 years old is as obvious a sign of disability as missing legs. And I'm not minimizing the difficulties of having missing limbs. I just envy the speed and objectivity with which missing limbs can be "assessed".

The hilarious part is that at the end of all these assessments, the conclusion is always the same: "Your child is really delayed." No way! For real?

As I said, the people were very nice. And I get how bureaucracy works. But it really is a PITA and I feel entitled to whine just a little.

Maybe we're not just whiners

Sometimes we worry we're just whiners, that raising Quinn is no harder than raising any other kid. But in the past week, our whining has been validated.

First, we got told by our Regional Center social worker that we likely qualify for respite care, more than the minimum amount. This determination was based on an email I sent her in which I described some of Quinn's more challenging behaviors, and the email wasn't that long and I took care not to exaggerate.

Then, on inauguration day, we attended a wonderful breakfast at our church with Quinn and Zac's mother. Quinn had three loving adults looking after him, but we all had to work pretty hard to keep the tantrums at bay and prevent mishaps with, well, everything, from hot cups of coffee to furniture-turned-jungle-gym to other people's belongings. And we had plenty of books and toys for him, but nothing was sufficiently calming or engrossing, so the three of us took turns walking him around in the stroller (missing parts of the ceremony) or letting him play in the entrance area of the church, where there is a fountain he attempts to hurl himself into, an activity he enjoys enormously. Meanwhile, many other children, both younger and older than Quinn, sat quietly in their parents' laps watching the ceremony, or occasionally needed some walking around the room, but in a relatively quiet, safe, and organized fashion.

None of this is to say that Quinn is not delighful, magical, and the apple of our eye. We love him like crazy. But he is indeed a lot of work.

Catching Up and Random Bits and Pieces

Our posting has been slowed down this week as we've returned to work, etc. Things have been good, just busy. I got and accepted a great new job, and am making plans to transition from my current one. I'm going to New Orleans next weekend for a work conference, so I've also been preparing for that. It will be excellent to see many of my old pals from Haviland Hall and other colleagues.

Quinn woke up at 4 am today. Yep, it's 6, and I've already been up for two hours.

As March is quickly approaching, which is the last IFSP review before Quinn turns 3, we are starting to think about which school district we'd like Quinn to be in. We are hoping to move in the spring, so where we live is open. In my work on transition-age youth (young people ages 16-21), I'd read and written about institutional transitions, which are transitions guided by bureaucratic system demands, rather than client needs. I have to say, now that such a transition is upon us, I have a new perspective on them. We feel like we're just getting to know our early intervention providers, and have settled into a routine. So being forced to make a change just because Quinn will be 3 is frustrating.

Zac is off to play d&d this weekend with some buddies. Quinn and I will be going to our monthly East Bay parents of kids with special needs group, which currently meets at SadieDey's Cafe (formerly Tumble and Tea). If you're in the SF Bay Area, feel free to join us. We also have plans to hang out with other friends we haven't been seeing enough of. It should be a fun weekend. If Quinn will sleep past 4 am.

Our little guy got us a Christmas present!

Awhile ago, I posted that he is making a few signs and saying "mmmoohh". We weren't sure at first, but now there's no mistake, Quinn is talking! He is still saying "Mmmoohh" (more) and yesterday said "Ah Duh" (all done). Woohoo!

Since sign language and speech are emerging, we're ditching the PECS for the time being. We were bad and lazy about using the cards anyway. When our kid is crying for milk, it is hard to crawl around on the floor looking for the slimy milk card he adorned with drool and snot and then threw during the last meal.

This is a wonderful Christmas gift for us. It's been a long time coming for both the signs and the speech. Like many good yuppie parents, we started doing a few signs half-heartedly from the time he was a few months old, and have been doing them (especially "more") pretty intensively for the last 9 months at every opportunity (more tickling, more bubbles, more reading, more singing, more food). It didn't look like it was sticking. I'll admit, I was getting discouraged. But clearly Quinn was just waiting for the right occasion to share his newfound ability!

After the diagnosis

You all must've known that after the flurry of light-hearted posts, we'd have to throw in a serious one. We have talked many times about the period right after we got Quinn's Fragile X diagnosis, how we were feeling, and what was or would have been helpful. I wanted to write this post while the feelings were fresh enough to remember, but no longer too difficult to write about. We got Quinn's diagnosis about five months ago. For about a year before the diagnosis, we knew he was delayed in his development, but we didn't know why, and we didn't know that it was a permanent (or perhaps someday, but not today, curable) condition.

We are very grateful to many family members, friends, co-workers, and acquaintances who expressed their love and support for us. Some of them commented, "I don't know what to say/do." At the time, we were so consumed with our feelings, we didn't know how to respond.

Now that we've had a little time to think, we have some ideas, which we hope will be helpful to people grappling with a new diagnosis.

When other sad events happen to a loved one, friends and family may feel awkward or unsure about what to say or do, but there is usually a social script or personal experience to rely on. For example, many people have experienced the loss of a loved one, and we have ways, as a society, of dealing with that, like bereavement leave, rituals, and offers of casseroles. We have no social script for dealing with parents who have just learned of their child's special needs diagnosis, and most people have not personally dealt with something like this themselves and statistically speaking, they probably never will.

So here are some things you can offer - or ask for - in the period right after a child receives a special needs diagnosis:

1. Time off from work and other social obligations. One of the things that was hardest for us was that we felt expected to carry on with business as usual. This was very difficult. We desperately needed a break, and found it difficult to ask for one.
2. Babysitting help. As much as we love and adore our little guy, it was hard to process this information on very little sleep while avoiding tragic toddler accidents, changing diapers, reading Dr. Suess, and wiping a constantly runny nose.
3. Help with household stuff. For the first couple of months, we were so sad and exhausted that just paying our bills, doing laundry, and maintaining our house felt onerous.
   
4. Social outings that do not involve children. For the first couple of months, just seeing typically developing children was heartbreaking.
   
5. Meals, flowers, cards, emails. All of these little reminders that people care mean so much. We treasured the kind words and deeds of our friends. One night a friend of mine invited me over for dinner, when her husband was working late, after her son had gone to bed (see #3). The dinner was spaghetti with jarred sauce and a green salad. I cried in the car on the way home after seeing her, out of appreciation for her kindness. It was so nice to get to talk with her in a quiet, warm, comforting space, and not have to cook or do dishes.
6. Culturally appropriate spiritual healing. Since there are no rituals for making the transition to being a parent of a child with special needs, it is helpful to find places, people, books, music, and ceremonies that mark and make sense of the experience. We're not talking about the facts; we are geeks and have read too much about Fragile X, early intervention, medications, etc. Edited to add: We are also not talking about the utterance of religious maxims such as, "This is God's way," which can be unhelpful, insensitive, or culturally inappropriate. This is about processes for dealing with the existential stuff: What does this all mean? What now? We are still looking for more ideas on this one, and welcome any resources others have found helpful. (And yes, we've seen "Welcome to Holland". It's okay, but not really doing the job.)
7. Shared language. One of the things about this diagnosis, and probably a lot of other special needs conditions, is that in addition to dealing with feelings of sadness, a parent must also become an expert in the child's condition, quickly learning new words, people, and places. The more friends and family know, the easier it is to communicate about our experiences. Even day-to-day conversation can be encumbered when in the course of making plans, we casually say, "Quinn has an OT appointment that afternoon," and then have to pause to explain what an OT is and why Quinn has one. We love it when people know the lingo because it makes not only the "big" conversations less taxing, but the everyday small talk as well.
   

To help anyone dealing with a new diagnosis who has found this page by googling, we hope that other parents of kids with special needs who read this blog will use the comments section to add your thoughts on what was or would've been helpful to you, or write a post on your blog and link to it here.

PECS

So we're starting a little picture exchange communication system (PECS) with Quinn. I was a hesitant at first, thinking, "But he's gonna talk any day now, so why do we need that?" But it's become clear that: 1) It might be awhile before Quinn speaks; and 2) He has a lot to say, as evidenced by his numerous adorable requests for assistance by putting our hands on stuff. Today, for example, Quinn got Zac to open the car door, buckle Quinn in, and drive around the block - all by putting Zac's hands on what he wanted. (For the drive around the block part, he nudged Zac towards the front seat - Zac had been sitting in the back seat with Quinn - and Zac took that as an indication that Quinn wanted Zac to drive the car.) We wonder, did Quinn want to go just anywhere (like around the block) or did he have a specific destination in mind? We hope that as Quinn's PECS power increases, he'll be able to tell us lots of things. We can't wait to learn more about what he's thinking and wanting.

Some technical notes for others who might be curious about PECS: the pics shown above are just a few of the ones we made. Some of them are pictures we took, and some we found using google image search. We printed the pics on our home printer using picasa's handy "contact sheet" collage function. Then we glued the pics to corrugated cardboard and laminated them using no-heat-needed laminating sheets from Target. Finally, we stuck small pieces of velcro to the finished cards. Yup, it's a PITA. But we hope it will be worth it. We just didn't think Quinn would respond to the standard PECS.

A New Language

PT...OT...ST...SW...CHO...LPCH...PIP...LEAP...RCEB...IFSP...POS...IEP...SELPA...PECS...
proprioceptive...sensory integration...motor planning...CGG Repeat...FMR1...MGlur5...
premutation...full mutation...methylation...FXS...FXTAS...FXPOI...carrier...
mosaicism...respite...weighted vest...chewie tubes...Ps and Qs...orthopedic inserts...crib tent...pronation... expressive...receptive...melatonin... folic acid...carnitine...MRI...eustachian tube dysfunction...negative pressure...karyotype...VABS...Bailey Scales...IDS... Peabody...strabismus...mitral valve prolapse...tongue lateralization...lip closure...macrocephaly...hypotonia...joint laxity...joint compression...vestibular

It Takes A Village

This maxim exists for a reason. It's true for any kid. Raising kids is hard, parents need help, and kids benefit from interacting with lots of loving people. But kids with special needs really do need a village, a fact I am finding both challenging and wonderful.

The main challenge is logistics, as noted in the prior post. Here's a rundown of our family's team, roughly in order of frequency of contact:

- Special needs integrated pre-school including multiple teachers and aides
- Speech therapist
- Occupational therapist
- Physical therapist
- Infant development therapist (who we sadly had our last meeting with today as she's retiring).
- Housecleaners
- Therapist for parents to help us deal with this diagnosis and all the baggage it comes with
- On-call nanny to care for our child when he can't go to the special school due to the common cold he will most likely have all winter
- Babysitter (she has a day job so can't be the on-call nanny)
- General pediatrician
- Developmental pediatrician
- Social worker
- Geneticist
- Fragile X specialist
- Neurologist

(As a fun aside, which will be the subject of another post - lots of these village members will be replaced by new ones when our son turns three because at that point the school district will be in charge of his care. So we'll have a whole new set of people to get to know.)

Logistics aside, this is a blessing. It has been humbling and freeing to be able to say that I really don't know, often, what to do with my son or how to help him. I have to hand my son over to the village. There's no other choice because we can't possibly do this alone. If you are not the parents of a child with special needs, you may think I am suffering from a lack of confidence or need to read more parenting books. Here are a couple of examples of things I couldn't teach my son:

1. To eat. Literally, to bite, chew, swallow. My son would not touch non-pureed food of any kind until we got a feeding therapist to teach him how to eat. We tried everything from organic scrumptious fruit to french fries to cake, and at best he wouldn't touch them, and at worst, if we tried to introduce the offending substance into his mouth, he would cry, gag, and vomit. Our feeding therapist got him to eat within a few months.

2. To play. I really wanted my child to play with this toy. He loved it whenever I pushed the popper around the room, but whenever I handed the stick to him, he just looked at it blankly. After months of popper demonstrations which delighted my son, but did not succeed in teaching him how to play with it, I told the infant development therapist what was happening. She explained that he had a motor planning problem, and could not easily envision his body moving through space the way that most people could. Thus his difficulty in mimicking us. She put his hand on the toy, then put her hand over his (a common technique I now know is called hand-over-hand), and pushed the popper. Within a few minutes, he was smiling and popping the popper on his own.

Something in our society makes parents, especially mothers, feel that they must know how to take care of their child, that they are the expert of the family. It seems accepted that a parent will take pride in this responsibility. Some of our providers are sensitive to this, and will say, "But of course you know what will work for your son," and though I appreciate the comment, I sometimes think, "No, I really don't." And that's okay. I'm very grateful to our village for all their support, patience, and guidance. Even if it is a logistical nightmare.