Ellie's third birthday triggered an end to a program she's been in....her whole life!
Three years minus about four days ago...two people visited our house and one lady called on the phone. Now both of those things that began long ago are coming to a close.
If there's one thing evvvverybody tells you to do when you have a child with developmental delays, it's "sign up for an early intervention program". Ours in town is called "Babies Can't Wait". You are encouraged to sign up while still pregnant so I did and had all that lined up. The good/bad of that is they want to start helping you right away by coming to your house and asking you 27 million questions about the baby you've only known for a few days and how could you know anything when you're only on chapter two of the Handbook for Families with a Child with Down syndrome.
So Jeff took the kids out of the house and I sat through the whole intake process. Shortly after that, we began to get visits from therapists to work on things like rolling over. Except soon after we started, Ellie was in no position to roll over. Hard to do when you have tubes coming out of you and you keep falling asleep. But the therapists came anyway and did little things like let her chew on a little plastic device for oral stimulation, etc. Through the years there were were funding issues and staff issues so it wasn't always consistent. Until about nine months ago. At that time we were assigned a therapist who stuck with us the whole way and worked on Ellie's fine motor skills and oral exercises. She was a terrific fit for our family and we loved the days she came.
Patricia came to our house every other week and brought puzzles, balls, electric toothbrushes, games, toys, whipped cream for Ellie to play with, crafts and various other "gimmicks" as she called them to get Ellie to do the hard work she was tasked with. She had a special little helper each visit - a cute little 5-year-old little girl who let her in the door every week :). When Patricia started with us, Ellie was neither walking nor eating. She worked on both things and by the time we had our last visit last week, Ellie was like a different child!
We had a little celebration with cupcakes and we all cheered when Ellie blew out her own candles. Then it was really neat to watch her eat with someone that appreciates all she's accomplished. The kids and myself were cheering and then there was this other person in the house that was also so happy and celebrating too...it made it feel like she was part of the family too! I love that the program came to our home. It was really wonderful.
Here is Ellie and Patricia whom she reached for upon arrival every week.
As far as why kids get "discharged" at 3 years old - the program assumes you will then enroll your child into the public school system and receive services/therapy there. All the staff I've met with both in these programs as well as in the school system (amazingly the coordinator goes to our church!), all agree that the home can continue to be an environment in which Ellie learns, grows and thrives. I think it's fair to say her siblings have been paying attention over the years to all the tricks of the trade. I see them doing exercises on their own like encouraging Ellie to kick a ball around the room.
We'll miss Patricia and we thank her for her dedication to our family and her big kind heart!
The other relationship ending is a representative we were assigned through our insurance company to sort through some of our medial concerns/questions/billing issues. It was this same week of coming home from the hospital and adjusting that we got a phone call. For some reason on this day it was just me at home with the kids. I answered the phone and a woman identified herself but I totally missed what she said. You know how those first few seconds of a phone call be be foggy? Then she said something like "I want to explain what I do - do you have about 15 minutes for this phone call?" I heard that. But what I actually processed was: "Can you manage your four children while rounding up enough brain cells to have this important conversation right now?" I politely asked her if we could do it another time and she was great about it. Later when we re-connected I was happy to learn that if you have a baby who racks up a large amount of medical bills just by taking their first breath, you get your very own insurance agent you can email and call directly with pretty much any question. Oh and she's also a registered nurse. Score. This lady knew everything about Ellie and in a short time knew everything about our family. She was awesome. We must have talked more than 100 times. We'd talk every day for a few minutes during the hospitilizations - she wanted to know everything happening. Partly to communicate to her superiors what was "coming down the pike" in terms of expenses but she really really cared about Ellie and steered us toward/away from things several times during hard decisions. She was one of the ones that encouraged me to "embrace the tube" for feeding in the beginning :).
The other week she suprised me right after we'd talked about Ellie's success with eating when she notified me our time together had to end. Because of Ellie's "non critical" state, we'd be going back in the main pool of people who have to dial a 1-800 number for insurance questions. In fact, she said applying for the feeding program was really the last thing she was told she could do for us and when Ellie started eating we dropped that whole thing.
So I thanked her tremendously (I thought we'd have her forever!) and we said bye. It's a weird ending. Weird to be "dependent" on someone then not need them anymore! Plus she was nice and made me laugh. Sniff.
Well, as people have come and gone over these three years (there have been a FEW!), one person has stayed with us all this time. That's our little Ellie - the center of all this fuss. So many people have cared about her and have jumped into our lives. Then they jump out because she's doing better.
I guess that's the definition of a "Happy Ending".
