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.

Comparisons are just getting weirder and harder all the time

Of course I know I "shouldn't" compare Quinn to other kids. Of course. He's his own little person with his own special gifts (like his adorable laugh and contagious joie de vivre). But frankly, it's just getting weirder and harder all the time, and I fear the comparisons will only become more stark and obvious as time goes by. Intellectually, I understand why this is. The gap between Quinn's and typically developing kids' abilities will widen because his rate of development, like most boys with Fragile X, is about half that of (give or take) other kids.

Today we tried a new play cafe. It was fun, and a special treat for Quinn and I since I'm usually working when all the cool play cafes are open. Quinn loved the ball pit, different fireman hats, and puppet theater (for playing peekaboo with the curtains).

It's just shocking, though, to see kids literally half Quinn's size and age, talking, running, jumping, going up and down stairs with ease, and engaging in what looks like very sophisticated pretend play, all of which are things Quinn cannot do yet. I know he will be able to do these things eventually, but there will be a point where other kids will start doing things that Quinn will never do.

It's also socially awkward because people seem to do a double take as my relatively big kid needs help with so many things, doesn't talk, and plays peekaboo with mom for a looooong time while other kids run off to play house in the pretend kitchen.

I also felt a bit jealous of other parents, sitting calmly drinking coffee for at least 75% of the time, while I'd say my sit-to-redirect ratio was more like 25% sitting, 75% redirecting. Most of the other kids didn't need to be told 5,000 times (in one hour) that the toys are "not for your mouth" or that you cannot just sit on other kids or touch their faces (Quinn seems oblivious to these social norms that other, much younger children, seem to get). Other kids didn't fall twice, bite their parents, or pull their parents' hair. I kind of get it why we are so tired and stressed.

And this was not at all a bad time for Quinn and me. This was just a normal time. Not a stellar, Quinn-as-superstar time, but not a bad time, which is much worse than what I've described above. This morning was what most activities with my little guy are like.

I can't imagine what it would be like to be out, sitting at a table drinking coffee, for at least 20 minutes while my kid played without incident. My favorite "other parent" example involved another mom, relaxing at her table, when her two-year-old (I know her age 'cause the mom told me) brought her a pretend pizza to eat and said "Pizza, Mommy." The mom said, "Thank you! I love pizza! Can you bring me some parmesan cheese to put on it?" The little girl ran off, happily, and was gone for another 10 minutes. Wow. So many things going on there that are way beyond Quinn's abilities. If this happened to me, I'd probably jump for joy and order a round of cappuccino and chocolate milk for everyone.

I know...I'm whining. I'm a lucky parent of a terrific little guy. But it is tough.

Appetite for Destruction

Quinn's physical abilities seem to be growing by the second, and he has an appetite for destruction. On Thursday, within an hour of my coming home from work, he had dumped out the kitty litter, poured Kitty's water into her food bowl, spilling both water and wet food in the kitchen, and dragged potting soil from outside through the house. I know much of this is normal toddler parenting, but it is exhausting nonetheless!

Dressing him at times has also become a feat requiring strength, humor, and ingenuity. When he is not in the mood to get dressed, he pulls hair, writhes laughing maniacally on the floor, bites, and kicks. Saying "no" firmly and taking attention away (like a mini time out) only seems to bring on more giggles. Occasionally he'll have a tearful moment, only to break into writhing giggling again. I'm pretty sure he doesn't understand that these behaviors are not funny. Sometimes the only thing we can do is sing or make faces to distract him from his agenda of destruction so that he'll allow us to clothe him.

I don't think he puts on any of these performances at school, because they usually talk about how wonderful and angelic he is. I'm grateful for this, because we love his school and wouldn't want him kicked out. I really hope this is just a phase.

Update to discipline post

In the comments section to the discipline post, I wrote the following and thought it was important enough to publish as a regular post as it clarifies the original one:

There's no question we want/plan to provide structure and discipline for Quinn. The question is HOW. One of Quinn's therapists once wrote in a report that he requires "literally thousands" of repetitions to learn something. This is true. He does not yet say "mama", and only about a month ago indicated that he knew what "mama" meant by looking in my direction when someone said "Where's mama?" So many discipline techniques require a higher level of cognitive ability and understanding of communication than Quinn yet demonstrates. He is about 2.5, but is cognitively around 1 year old. I don't think many 1-year-olds have chores yet! Even having Quinn help pick up his own blocks requires constant supervision and reminding - i.e. sitting right next to him, putting the block in his hand and saying "put in" and offering praise for EACH block. We've been doing this for many months, and we're still at the one-block-at-a-time stage. I know his abilities will increase, and I see the development every day. But regardless, figuring out effective strategies for teaching him anything, including discipline, is very hard.

Discipline

So tonight Quinn was a little outta control at our dinner out (at 5 PM, eaten quickly, as all dinners out must be), and in the car on the way home, we started wondering if and how we should provide some discipline when we think Quinn is exhibiting behaviors we think he knows are inappropriate (but we don't know for sure what he knows, cause there's that whole talking thing that isn't happening much yet). We're not yellers and certainly not ever hitters. I'd say we're reasoners, but given his cognitive abilities, well, probably talking it out won't work, at least not yet. So we mostly opt for distraction. Tonight I pulled many fun items out of the swiss army diaper bag, and when those were all exhausted, I let him jump (literally, as in standing and jumping) on my lap while I tried to eat with one hand, a skill I perfected in his first year of life when he weighed considerably less and could not stand. Hey, at least he wasn't crying and I did actually eat.

I've read that permissive parenting styles are not associated with good outcomes, but I'm afraid we're pretty permissive with Quinn, since we don't really know what else to do. We can already see we will have to change our ways as he slowly but surely begins to act like an actual toddler. But without good communication, how will we do it? Any books or workshops you can recommend?