Wow! I can't believe it has already been over a year since my last post. Some have been reaching out to me for an update on our little J (who is not so little, by the way, she's just about to turn 3!). Here are some highlights from 2018:
February - J got AFOs (ankle and foot orthotics) to help stabilize her ankles for walking.
April - J took her LAST dose of topiramate! She has been seizure free for nearly two-and-a-half years now!
June - J finally said her second word: "up."
May - We were asked to pull J out of childcare. This was a horrible low point for us. Her childcare center had at first been so open to having J join their classroom--and I was very forthcoming about her needs and challenges. In the beginning, we felt we had great communication and that everyone was well supported. J's therapists were all doing services in the classroom and offered themselves up as resources to her teachers. Over time, however, it became apparent that her teachers were not willing to make any accommodations for her. They put her walker in a closet without consulting the PT. They removed red tape from step-stools--a visual aid recommended by her TVI to help J see where the steps were. During her time in childcare, she was unable to nap so they would strap her into a Rifton chair for the duration of nap time, sometimes without any toys or attention to occupy her. We cut down to part-time and pulled her from the program as quickly as we could. I genuinely believe that J was discriminated against in her childcare center. I once went in to pick her up and she was sitting in a corner alone eating a book, unsupervised. Her teachers would frequently complain to us about behaviors that were unrelated to her challenges and were, in fact, very normal toddler behaviors (like mouthing and not napping, peeing during diaper changes--pretty ridiculous stuff!). One teacher actually accused J of purposely peeing on her during diaper changes. We were happy to be rid of this place, but heartbroken that J had to leave all her friends.
July - J got glasses! They are green, flexible and super cute. We had a lot of trouble keeping them on her for the first week, but after that, it clicked that she could see better with them on. She still takes them off sometimes, usually when she's tired, but she also asks for them and is starting to learn how to put them on herself.
July - J got ear tubes, an immense relief after suffering 10 ear infections and 10 rounds of antibiotics in just five months. A word of warning: if your kid goes through too many rounds of antibiotics, they have to start giving a very painful shot, one in each leg, usually a few days in a row. It's really horrible. Happily, she's been perfectly healthy ever since, barely even a cold in the last six months.
August - J LEARNED TO WALK! I cannot express how overjoyed we were when J finally began taking steps on her own. It honestly felt like a miracle had occurred. Her physical therapist had just talked to us about how J could be four- or five-years-old before she really learned to walk on her own, but a week or two later, she just started walking! Considering she now weighs in at 41 lbs, it's been a huge relief physically, too. I was praying for the day she could just walk to the car on her own. Now she does every single day! It's obvious she's so psyched about being able to walk, too. She spends much of her day just walking back and forth across our living room. Since she's still a little uncomfortable walking outdoors on uneven ground, I sometimes take her to the mall so she can walk wherever she wants, for as long as she wants.
October - J transitioned from crib to toddler bed. Believe you me, we were so set for this to be a month-long ordeal of laboriously training her to stay in the bed. At the time, J still got a bottle of water to drink in her bed, and we also play Daniel Tiger on a laptop (just audio) at a very low volume that she can only hear if she's quiet and still. Both of these habits facilitated the switch and we've even been able to wean J of her bottle completely (well . . . she bit the nipple off the last one we had, and we swore not to buy any more after that!). She really transitioned flawlessly. She just got that her big girl bed was where she slept. She still falls asleep on the floor on very rare occasions, and she has more or less given up her nap (two-and-a-half hours every day down to nothing, just like that), but most of the time she simply lies in bed listening to Daniel Tiger until she falls asleep. We are way impressed! She sleeps all the way through the night, usually between 11 and 12 hours.
Over the last year, J's receptive language skills have grown like crazy! Just today I asked her if she wanted to play with playdough, and she went and got it from where its kept without any further instruction. She is learning things really quickly now! She has not picked up any new words, at least not as clearly as "more" and "up." We understand some of what she says to be approximations of words, like book is "buh," grampa is "bampa," etc. Most of her words start with "b." She is trying to imitate lots of words, though, and she sometimes busts out with highly complex stuff like, "strawberry," "thermometer," "cucumber," "marker." She can do this if she's not thinking about it, but she can't replicate it. Motor planning is still very challenging for her.
In December we had her first IEP meeting and she'll be turning three in just over a week and will transition from early intervention to school services, though she won't be able to start preschool until the fall.
We are very happy with the way things are going. We no longer feel like we have to temper our expectations, or that we are underestimating her. We've trained ourselves to let her be who she is and to not worry too much about where she's going to end up. We certainly still think about it but in a far more abstract way. We're able to wrap our minds around her challenges now, without setting limits for her. I think that's the hardest part about coming to terms with raising a child with special needs, and it's an ongoing process for us, always, but we're getting better!
