From one Special needs 3 year old to another…

Once upon a time there was a 3 year old little girl with a lot of special medical needs. When that little girl grew up she ended up adopting her own little girl with some (different) medical needs. One thing the first little girl always remembered is that her mother was always honest with her and told her when and exactly what was going to happen. No lying or skirting the truth.

Today at lunch I took the same approach with Jude. I told her all about her MRI under anesthesia on Tuesday. Even with my nursing background the staff at Maine Medical Center has taken great pains to go over every detail with me this week. Tuesday morning we will be amongst the first in the hospital that I spent 6 months living in and have spent the 27 years since avoiding whenever I possibly can.

I cannot tell now how much Jude understands what I say, or how much of Tuesday she will remember; I just know I have vivid recollections of being her age and in scary medical situations and the only comforting thing for me was when things went just as my Mum said they would, even when it was painful at least I knew what was going on.

Now the trick seems to be how to calm myself down…

She Sings!

For the past few days Jude has been so close to singing. She has an adorable little sing-songy voice anyway (when she isn’t yelling or shrieking at something) so I have eagerly anticipated the day when I would hear her sing. That day came today.

I have also wondered which song would win the race. I really thought that it would be “Twinkle twinkle little star.” She nearly did that one a couple of weeks ago. She also is a big fan of itsy bitsy spiders and wheels on buses (shamefully I admit however her hands-down favorite song is Clint Eastwood by Gorillaz, (radio edit version because I do have SOME parenting skills)) But alas, no. Of course, the song that won (and I swear on my life that she really hasn’t heard it that much; maybe a handful of times) was…

Hey Jude by the Beatles

I should have known. Although she really didn’t get out the beginning part. She just smiled and danced. She did sing the “Na,na,na,na,na,na,na,na,na,na,na,na,na,na, na, hey Jude” part. Which goes for a good 3 minutes. Now the words “na”, “hey” and “Jude” are all in her regular vocabulary so this was kinda a no-brainer.

But I am so so stoked that she is singing now.

Reality

Jude has been home 8 weeks.

I have been back to work for 2 weeks.

Welcome to reality.

Jude is doing great. I feel like I am just barely surviving somedays. Whatever great plans I had for making sure that work didn’t go to hell in a handcart while I was gone went oh-so-horribly-wrong while I was gone. It probably would have been less work if the building burnt down and to come back to a pile of ashes. I’m totally serious.

We go into survival mode Sunday evenings and emerge Friday evenings. During that time our time home gets Triaged. I get to make dinner. Get lunches made for the next day. Clean the cat box. And Jude gets a bath and a bedtime story. If (IF) there is extra time I might be able to do a load of laundry or swap out a load of dishes in the dishwasher. If I get super lucky I might be able to read my mail. One night I had enought leftover time to eat a Chocoalte chip cookie before going to bed. I have learned that at least until Jude is older I won’t ever be able to blog or watch a movie on a work night. IT JUST AIN’T GONNA HAPPEN. Whatever. On the upside I will be able to save money by downsizing my netflix subscription. I know it will get better. Everything’s an adjustment.

But Jude is doing GREAT. When I am at work she spends the days with my Mum and she absolutely adores her Grammy Kitty. Jude has now gained 3.5 inches and 2 pounds since pickup. She has a regular English vocabulary of around 50 words and uses an additional 50-75 words occasionally. Her speech has come so far that after November she will no longer require Speech therapy. Over the next 2 weeks we will find out if she will be able to graduate from Physical Therapy and Occupational Therapy in November too. On September 2nd Jude will go in for the sedated MRI of her brain so we can get an answer once an for all about what is going on in that tiny but busy cranium of hers.

I am super excited to see Jude grow in other ways I hadn’t expected to see so soon after her adoption. Just in the past few weeks we have seen the buddings of Jude’s IMAGINATION. Yes. This is a little hard to explain, but when I first picked up Jude she only had a very basic understanding of how to play with toys. She wouldn’t expand on their obvious intended functions. Rather rapidly over the past 2 weeks Jude has starting engaging more with the open-ended toys in the house and especially at bath or when playing in the water will chatter along to the toys, talking to herself. Something she had not done previously. She also likes to tuck dolls and stuffed animals into bed and nurture them. She tries to feed them. Jude is also taking an interest in picture books. When I do not read them to her, she will look at the pictures and again chatter to herself, making up her own stories it seems. She is even trying to sing. Specifically “Twinkle, Twinkle, little star.”

I am sometimes asked “What isn’t going well?” Truthfully? Sleeping. Jude doesn’t sleep well at night. We we warned of this issue on trip 1. I was prepared. It was massively draining on Pickup trip as I had to adust to her waking 2-6 times a night. It was totally fine to have this sleep schedule during maternity leave I was still tired; but now I am really tired. The lifesaver has been cosleeping. Without which Jude waking up would turin from a 30-60 second sleep interuption into a who-nows-how -long screaming and crying session. It also takes her 60-90 minutes to fall asleep at night. Every. Single. Night.
What else isn’t going well? Potty training. In fact it is a total no-go. Jude was allegedly begining potty training on trip 1 and in the midst of it on trip 2. Yeah. No. Just no. She throws a massive fit anywhere near the toilet. It took weeks just to get her to voluntarily walk into the bathroom. She now thinks flushing the toilet is fun, but absolutely refuses to go any further.

The Developmental Plan

On Tuesday I met with a group of therapists for a few hours to work on a plan for addressing Jude’s delays. We finalized the details of the plan towards the end of the week.

Jude will be in one part of Maine’s early intervention services until the day before she turns 3 (ie mid November) so the current plan takes us to that point. We are simultaneously working on the transition over to the age 3-5 early intervention services. They are similar to each other but not exactly the same.

By the end of August Jude will start weekly sessions at home with a special educator. The sessions will last for an hour and will encompass parts of Speech, Occupational, and Physical therapy services. In addition Jude will be attending a 90 minute playgroup once weekly (we started on Thursday and had a great time). There are some specific goals for Jude that were discussed and her educator will work towards those goals during their time together. Outside of those times we, as a family, will continue providing a predicable calm and enriching environment and we hope to see great things over the next several months.

As I mentioned we will also be working on transitioning to the other side of early intervention services in Maine. The greatest differences for us is that after age 3 therapy appointments will take place at the providers’ offices. We feel pretty confident that if Jude continues along her current line of progress that she likely will not need Physical therapy services by late fall. She may still require some Occupational therapy. We expect to be with speech therapy for at least sometime.

The greatest challenge will come as Jude increases her vocabulary and ability to communicate daily for us to bring her cognitive skills up to par. Jude appears eager to learn and in activities in which language is not such a barrier she is quick to catch on. In helping Jude with learning I am finding that the Waldorf homeschool materials I chose were the perfect fit; with two exceptions. 1. A limited time watching Sesame Street seems extremely helpful and I must credit Elmo for Jude’s enthusiasm in learning to dress and undress herself (amongst other things) 2. Jude’s pal Violet (by Leapfrog) has gotten her interested in songs that are age appropriate and has helped increase her vocabulary. Not to mention that this toy saves my life EVERY SINGLE BEDTIME. Other than that she is an outdoor/nature girl through and through.