Friday, July 10, 2009

Fragile X Friday: Little Farm

A little while back we attended a play date at Tilden Park's Little Farm in Berkeley. We had been hearing about it for a long time but didn't get around to going until just recently. There is a lot of cool stuff to do in Tilden, Little Farm is just one of them.

http://www.ebparks.org/parks/vc/tna

On this particular Day we were running a little late. Holly had therapy that morning, and I tried to get her to take a nap, but she wasn't having it, so we headed to the play date. We were meeting a number of Mom's from my meet-up group, about 30 were in attendance, but most I didn't know. Gigi and Simone, Melanie and Eliana, and Cynthia and Erik were in attendance and I ran into them and was able to say hello. Emi and Parker were there too but we never saw them, our stay was pretty short.We started off saying hello to some sheep. When we first went up to them holly seemed to be OK. She looked at them with Curiosity. Mommy pet them but she didn't want to. So I fed the little guy a piece of Lettuce. he chomped it down and as it disappeared Holly lost it.I immediately took a step back and walked away from them. We decided to explore for a bit and headed over to the Little Garden. I think they actually have sessions where kids can come and work in the garden and help grow the veggies. It was pretty cool and gave Holly a chance to relax and calm down.After she was calm, I decided to let her explore a little. She had been in the car, then the stroller, and then my arms, so I thought maybe she would be in a better mood if she had some freedom. She was hesitant to do much, but was happy to walk around. There wasn't a changing table anywhere to be seen, and I ended up having to change her on the ground in this little "classroom" but it was quick and easy and she seemed to be in much better spirits.She pushed around the stroller, and explored. After a bit I decided it was time to try and visit the animals again. This time we went to a different area where there were some Goats. She was ok Upon Approach, but as soon as I fed the goat and he gobbled up the cabbage Holly lost it again.We walked around some more to wait out her tears and let her calm down.She found a new area to play in away from the big animals. By this time I was perplexed. She seemed ok at first with the animals, but didn't like them eating. Was she overwhelmed, was she tired, was she scared. And this is where I start to talk about Fragile X, and Why it is so hard sometimes to raise a Special Needs Child. At times like these I never know if this is a normal toddler behavior, or something related to her Fragile X.The other kids loved the Farm, and the Animals, they weren't scared or confused or frightened. I hate to compare her to other children, but I don't know how toddlers are supposed to act, so its hard not to wonder if every little quirk is temperament, normal, Fragile X, or who knows what.I think when she gets overwhelmed she starts to become sensory seeking. But then that is even hard to confirm, is she teething, is she seeking input to help regulate her senses and help calm herself. She chews on everything. The other thing is anxiety, I know its an issue for some Fragile X girls, but is it something you need meds to get over, is it something you can learn to get over. I have this theory that if I continue to push her she will learn to accept new situations, but what if that's not the case and i only make her more anxious.So of course, three times isn't always a charm and I tried again with a Cow. This time I simply had to walk towards the cow and she started to cry. So instead we went into a little barn that had little ducks and rabbits and chicken, and she wasn't scared of them. They of course were little and not eating the Cabbage I brought. Just when I thought things were looking up, the Rooster crowed and she freaked out again. meltdown four. This time it was just about more then Mommy could take and I decided to leave. On our way out, I let her take her time, walk, wander around and explore, a little to cheer up, but that darn rooster kept a crowing, and she would cry each time. Near the parking lot there was a fun little playground. Some of the Mom's I was meeting were hanging out and eating there lunch and there kids were playing. It was piping hot. I couldn't touch the slide, and Holly was so ready for her nap by then. So I said hello and we took off. It was too hot for me to let her play, but I am about persistent as Holly is and we will be going back again, hopefully next time she can play at the structure, and maybe the animals will be less scary. Being a parent is like playing Russian Roulette, you never know what thing you might do to totally screw up your kid, and you never know what is up next.

1 comment:

Jen said...

That's a tough call on what's FX related and what's just being a toddler, and how serious of an issue is it. I realize that for girls, there are so many different levels of how they are affected, so I can only speak for my daughter and her situation; I realize many are much more affected than she is. Like I've mentioned to you before, we didn't find out about her full mutation until she was 12. Even though we got Kyle's diagnosis years before that, I never even imagined that she had the full mutation. NOW, looking back at her childhood, I can say, "Oh, maybe that was because of FX." For example, when she was a toddler, she had this thing about "crud"--little specks of anything that might be in the bathtub during bath time, or little pieces of lint that would be on the floor after bath time when I would put her jammies on. Totally freaked out! When she was 2 or maybe 1, we went to this place, in a building, and they had the Easter bunny. Not happy about that. She definitely didn't like strangers, but that could be attributed to the fact that I was a stay at home mom, and we didn't get out much, except to the beach and parks.
As she got older (elem. school age), we had birthday parties for her...by the end of the party, she would be in tears for what seemed like no apparent reason. I had read, though, that sometimes kids that age do that--overwhelmed. Looking back, though, I'm guessing it was FX related.
Kindergarten conference: She's a very quiet, sweet girl. She's usually the one to organize the crayons and supplies at her groups table. (This organization skill wasn't happening at home! :)
This theme of being quiet followed her throughout elementary school, but I chalked it up to the fact that both my husband and I are in general, quiet people. We (his family tells me) were both "shy" in school.
BUT, although she is "quiet," in fourth grade? she performed in the talent show...I NEVER would have done that! She made up a gymnastics routine to a song--it was great!
Now, she's still a quiet person, except around her friends, but yet, she likes to perform. She was in a couple of shows at school, she sang the National Anthem a couple of times before games, she sings frequently at church, and she has sung in two weddings.
Does she have a job this summer????? NO!!!!! (big area of conflict) But, I think she has anxiety about interviews and such, so her effort in finding one has been lacking severely. Are there teenagers without Fragile X that have this same problem? Of course, but, I'm guessing hers is due to the gene. She's not on meds, never has been (none of us have), but maybe someday she'll choose to be...at this point, I don't see that happening, but maybe someday...
Sorry about the hi-jack. :)