Friday, October 30
Things have been good here lately. But for the most part, I am just numb to the daily routine until we have a day like today.
Will has a cold. A bad one. So bad that it has affected his sleep which we JUST got under control. Last night he was awake from 4:30am to 6:30am. I do not know why, but each time this happens, it is two hours. Exactly.
Which means that I have now been awake since 4:30 as well. And that Will stayed home from school. Again.
Meanwhile, I received an email and voice mail from our county MRDD person answering my phone call yesterday inquiring about getting someone certified for respite care. A process which is not so easy. I found out recently that if we do not use our waiver money, then there is the chance we'll lose the waiver altogether, Medicaid card included. Without this, we'd be totally broke and in debt to our eyeballs.
However, using the money is not that simple. Lots of hoops to jump through.
At the same time, I am emailing and reading emails from four people on Will's school team to get his IEP to reflect the correct eligibility for services. More hoops. Waiting on the autism team to continue to hoop jumping process.
Also today I received a card from the school district's transportation office saying Will was going to be removed from the bus route due to inconsistent use. (We've started keeping him home every time he has a cruddy night of sleep.) Which meant I had to make another phone call to clear up the fact that yes, this is due to medical issues and yes, we still need the bus. Hello hoops. I'm jumping.
I'm awaiting a letter home from the school district to let me know that Will's dental form is out of date and he needs an appointment. Which I have not scheduled. Well, scheduled and cancelled due to illness. Not rescheduled.
I spent another 20 minutes on the phone with someone from his medical team figuring out what was going on with his sleep. (The result: Illness + mito dysfunction = stress on body which then = lack of sleep for Will currently)
All the while I mixed meds, fed kids, cleaned house....sort of, and found someone (thanks Grandma!) to come over so I can attend another child's Halloween Party.
'Cause, you know, I have other kids too.
So sometimes I wonder....do they know? Do they ever wonder why we look so tired? It isn't just meds and therapies (Darn it, I forgot to do his PROMPT exercises today!). It is all of the paperwork, phone calls, and hoop jumping I have to do.
Most of my days are like this...though admittedly less intense. Do they know? Those people....the people that make the rules....do they know what our days are like?
I doubt it.
Sunday, October 25
I have to do this, however, to space out the cost of Christmas. We're on a tight budget because Will costs us a house payment alone in out of pocket expenses each month. (More about that in an upcoming post.)
We talk every year of our kids having too much or getting too much. We have simplified greatly over the past years, but we're still looking for a way to reign in Christmas. It doesn't help matters any that Will's birthday is in October, my oldest is in December, and my youngest in January. It is a barrage of gift giving through a few short months and then the whirlwind is over. It's overwhelming.
So, instead, we're talking about implementing a simple strategy I've heard a lot about....Want. Need. Wear. Read. It is just as it sounds...the kids get four things, though some families implement a Santa gift as well. For more info, click on the link here.
We're also talking about doing something during the holidays to work on teaching the kids to think of others. Maybe Operation Christmas Child. Have you heard of this?
Do you have anything special to remind kids what the season is really about? I'm looking for ideas....
Friday, October 23
**We have a corner in our basement sensory room all set up for our ABA time. This picture actually shows the corner before we cleared it out and put a small child sized table from IKEA there. All of the toys, reinforcers, and work are now inside a cabinet that has child locks on it.**
This week, we have continued to work on getting Will to sit when he is asked to. He has been doing wonderfully. Today, I gave him the prompt to "come sit" 10 times. Each time he came, got reinforced, and then was asked to do a small, easy task before being told to "go play".
Some of the things we do when he sits at the table are: a favorite puzzle, matching a picture, putting pegs into a pegboard, touching body parts, and following short directives like "clap your hands" or "knock on the table". The point of these activities is to extend his time sitting at the table. In the beginning, we only asked him to sit. Now we ask him to sit and complete one very short activity. Right now, the table is still viewed as a fun place to be!
This past weekend, we had a birthday party for Will at one of those places that has the bouncy inflatables. I've never booked a birthday party anywhere for my kids since they tend to be more costly than what I spend here at home, but it was something that I knew Will would enjoy and decided it would be money well spent.
Because we have such wonderful neighbors and family, Will had lots of friends there who made his day special. He loved it! Every bit of it...the bouncing, the sliding, the singing, the cake. He even enjoyed opening his presents.
The girls, of course, loved it too!
We've come SO far. Will threw the cake off of the table at his second birthday and had to be bribed to open even one gift at his third birthday. This year was just amazing and a tribute to just how far one little boy has come. Needless to say, I spent the ride home in tears, thanking God for the blessings we've received.
**Speaking of blessings, he really deserves his own post, but October is a very busy month in our house. Ten years ago today, I married my husband, who is the best husband and father a girl could hope for. I love you so much!!!!
Sunday, October 18
Click here for link to story on NPR.
I read this on a friend's blog tonight. It apparently hit Norah's hometown. Something in me stopped suddenly when I looked at the pictures and read her town's name in print. I swear, it seems like yesterday that we were there and yet it seems like forever ago. (Makes lots of sense, right?)
It is hard to believe that it hasn't even been a year since we got her. At this time last year, we were praying that the wait wouldn't be much longer. In fact, on this date last year, we were informed that our fingerprints had expired, which was so frustrating! I've kept the emails and just going back and rereading them brings back a rush of emotions as we found out we were traveling.
She's such a pip. She understands so much and is so very smart. Talks a blue streak and has this personality that draws people to her....we are so lucky.
Friday, October 16
He came into this world without a hitch and went home a perfect baby. A week later, my whole world was shattered when we learned he was aspirating badly. A couple of weeks later, my heart shattered once again when we found out he had a chromosome abnormality.
I didn't think I could ever put it back together again.
Events in our life are marked by moments. This morning, the morning of his birthday, my five year old marked the moment by crawling into bed and waking me with a kiss as he said "Hi mommy!" cheerfully.
We've come a long way, baby.
An old friend once said that having a child with special needs was like watching the Wizard of Oz in color. She said that, before her son was born, she saw the world in black and white, just like watching the old version of the movie in black and white. It's a good movie, and you don't know that you are missing anything. It seems just fine.
Then later, you get to see the remade version in color, and oh, the glory. It is spectacular!
That friend of mine....she's a smart lady. There were times when I didn't want to watch the world in color OR in black and white. I wanted to turn it off and crawl back into bed. However, kids have a funny way of keeping you from turning the world off. They force you to watch.
Will forced me to see the world in color, to meet people I would have never met, and to learn to appreciate things I never thought I'd appreciate before.
These days things are pretty good in our house. Will has long surpassed the doubts that people had about his ability, and in general, we enjoy good health and lots of fun here. I'm a lucky girl. I rejoice in the moments like this morning, when I am reminded of all that I've been given.
Happy birthday Will! Your dad and I love you so very much!!!
Wednesday, October 14
Today we begin our home ABA programming. I met with Will's coordinator on Monday, and she gave me some great ideas on where to begin.
Right now, we are focusing on three main things:
- Sitting at the Work Table
- Learning to Wait
- Taking Turns
Sitting at the work table: Right now, Will's biggest challenge is completing task demands. He actually has some good requesting skills as well as early joint attention and imitation. However, we have the most issues when we ask Will to do something that he doesn't want to do. As you can imagine, this doesn't go really well at school because there are lots of demands placed during a school day. His current avoidance behaviors include what his teacher has now coined as the "Stop, Drop, and Flop" as well as pinching, kicking, and hollering.
So, for now, we are putting favored activities, easy activities such as cause and effect toys, and reinforcers like food at the table. When Will responds to the demand of "come sit down" he will be reinforced. After he is able to do this successfully for 10-20 trials, we will begin increasing his time at the table, starting with favored activities.
Learning to wait: Will has a terrible time when someone asks him to wait. So, we are being very careful with our use of the word wait, and actually teaching it by telling him to wait, counting to five, and then reinforcing him with what he wants immediately. We are doing this only in situations where he can have what he wants right away.
Taking turns: When Will is playing with something, we are going to give a verbal prompt of "3-2-1, my turn", take the toy and reinforce him with food. Then, almost immediately, he gets the toy back. We will phase out the food hopefully quickly and eventually extend the time.
I am hopeful that these things are going to help! With Will, it isn't so much the skills he has or doesn't have, rather it is the compliance that gets in the way every time. This is so vital to functioning within society and within a school so as you can imagine, we are very excited to get started!
Wednesday, October 7
Will turns five in just over a week. I can not believe it!
Here are pictures of his birthday present - a Fuf chair. A very sweet friend and her husband gave us a great deal on the Fuf....her husband owns the company. We are so blessed to have so many caring people in our lives!
As you can see, Will LOVES it.
In other news, we visited the medical director of our local autism clinic/program here at our hospital. Will has had plenty of other diagnoses in his life, and although I knew this one was most likely appropriate, it just wasn't necessary. However, it has become necessary for some school based decisions and programming.
It went well, and I really enjoyed talking with her. (In fact, she has a daughter that was adopted from China!) She agrees and gave Will a provisional autism diagnosis. We will go through the process though of filling out the ADOS and meeting with some of the other team members to get an official diagnosis and look at some of his strengths and weaknesses. It was nice to hear that she thought he had some really good skills in place. He does show nice joint attention for some things and he is trying to imitate and speak quite a few words on top of the significant apraxia he has going on.
All in all, this appointment was a good one and I am not sad in the least bit. This is simply another label that explains more about the way that Will thinks, but it certainly doesn't change who he is. I realized once again today how lucky we've really been with him. It may not sound like it with all of his issues and diagnoses, but we are. Some of this doctor's comments confirmed it as well.
And so, we move ahead.