Tuesday, January 8, 2013

Saying Goodbye

I say "Goodbye" to my little boy three times a day. Six if you count the times I say goodbye to him after his ten minute break during his ABA therapy session. Some days it's less, like on Sundays when he doesn't have therapy or the days that he has two 3-hour sessions instead of three 2-hour sessions.

James standing at the bathroom sink
James getting into trouble in the bathroom
(Lily took this picture from the toilet)
I'll admit it, some days I don't mind it. In fact, there are some days when his therapist comes out to get him and I'm relieved. We've been potty training Lily and he gets into everything in the bathroom, and we have to keep the baby lock on the bathroom door so he doesn't get in there. Poor Lily has had some accidents because she can't get into the bathroom.

But there are some days, lots of days, when it's the hardest thing in the world. Today was one of those days. James' sessions are normally 50 minutes of work, then a 10 minute break and another 50 minutes of work. I always try to be around and there for him on those breaks. Or try to have someone there for him.

Today I had already put Lily down for her nap when James came out on his break. He was coloring WITH me (James still has a hard time with companion play). He was using a blue colored pencil and was coloring a car on one page while I was coloring a dog on the other page.

When the break is over we usually say "It's time to go back to work. Say 'bye bye.' Say 'bye bye Lily,' say 'bye bye Mommy.'" Today, when we said, "It's time to go back to work," James said, WITHOUT prompting, "Bye,  I love you mommy."

  1. He said "I love you Mommy."
  2. He said it without being prompted or hearing someone else say it first.
  3. He chained 5 words. FIVE words. Four months ago, my little boy could barely say 5 words. Now he can say five words in a row without stopping.

James has said "I love you" before but always after hearing it first. His longest chain before this was four words, "Turn on the TV" (which of course we did because he said FOUR words in a row).

But he also said "Bye." I have to say goodbye to my little boy 3-6 times a day but he has to say it to me too.
James wearing a shirt that says "Mommy's little man"
Oct 2010

After his midday session I always put him in his crib for a 'nap' which usually ends up being 'quiet time' for him cause he never really naps. I used to keep him with me and we'd sit on the couch and watch Shrek or something like that but we found that his evening shift went better if he had his quiet time. I have trouble checking on him at night because I just want to pick him up and bring him into bed with me but then Chris and I wouldn't get any sleep because we'd be too busy worrying that he'd fall off the bed. And if I brought James I'd want to bring Lily too and that girl never stops moving.

I tell myself that after these 3 years of therapy that me and Chris will make up the time we missed spending with him and it'll be even better because James will know what spending time with his mommy and daddy means.

And Lily. Those two little ones love each other and miss each other everyday. Maybe writing this will remind me to let them stay up late some nights watching a movie together or playing Phase 10.

Lily getting caught and smiling at the camera
Caught you!!

Lily holding a cup over the doorknob and using a plastic screwdriver
Lily trying to break into the Therapy Room to see

Hopefully all of that will happen. James won a "lottery" for a pilot program, the "Utah Autism Waiver" which provides about $30,000 a year for ABA therapy (http://health.utah.gov/autismwaiver/). It sounded too good to be true. It was. It turns out that if you accept the waiver you can have only the up to 15 hours of ABA that the state pays for, and can't supplement other needed therapy hours out of your own pocket. Parents have to choose between 5, 10, and 15 hours of ABA therapy per week. There are lots of assessments, and hopefully in the end they will be able to show the legislature how much better the kids who received 15 hours are doing. If we paid for James to have the other 25 hours that he needs it would throw off the results. And every kid that needs ABA should be able to get it. There is no way that James will be able to continue to learn and maintain the things that he has already learned with only 15 hours of therapy a week. He already started a year after the recommended starting age and has a lot of compliance issues that we are trying to work through. We have chosen not to participate in the waiver program, so we are back to looking everywhere for ways to pay for his therapy.

But you know what, this means that some other little kid will have the opportunity to learn. There is another mom out there who might be able to hear her child call her "Mommy," something that she has been waiting so long to hear.

James with his favorite two therapists
James with his two favorite therapists on his 3rd birthday
It was nice to not think about having to move for a month. Maybe we won't have to in the end (though I am cursed with "Grawe Luck" which is bad luck (my maiden name is Grawe)). I wish that my son's future didn't depend on money. I wish I could pay my therapists more or be able to give them benefits so that James didn't have to lose someone special and then have a new one come into his life every month.

I remember one day, before James' diagnosis, when I was sitting at the computer and Lily kept saying, "Mommy, mommy, mommy, mommy" over and over and I wondered if James would ever do that. I remember telling Christopher when we started ABA that I hoped there was a day when James would do that. "Bye, I love you mommy" isn't the same thing, but for right now it works.


  1. If I could provide little James all the therapy he needed I'd do it in a heartbeat and for free. So happy he has made so much progress! I continue to pray for y'all and think of him every day because I wear my wristband, and already I am thinking of ways I can help raise awareness for him and autism in general. James is a special spirit and the Lord has entrusted you to raise him, so I hope you know that no matter how hard it gets, the Lord will always be there with you and help you through it. Sending lots of love and prayers!!

  2. Thank you for giving us this little glimpse into your life..and James'. Thank you for being such a magnificent mom. love and hugs~