becha’ thought I was going to say “A WHITE CHRISTMAS!”
These days, I could care less about those things. Perspective has changed over the last few years and while a white Christmas morning would be serene and peaceful, my life is anything but!
I mean, how can anyone that has children have quiet? Unless its nap time, which it totally is right now and I’m quietly listening to instrumental Christmas music with my Christmas cookie candle Ben got me for Christmas (Yes, early!) and watching the snow come down.
This past month has been wrapping up the end of year for so many things. I honestly don’t even have my Christmas tree up, but with as sensory as Benny is, everything will most likely go in his mouth so, we’ll see. Haha!
I know everyone is our house is ready for the year to be over, heck, I know I was back when I had to have my gallbladder taken out. I felt like I missed so much of the Summer getting back on the mend. What a bummer.
BUT…here we are. Less than a month away from having a 3-year-old. WHAAA?! Wait. Seriously, I’m half-panicking. So much going on and to do. People have asked me if I have Benny’s birthday plans ready, let’s be honest, I’ve been doing good to get up in the morning and make sure we’re ready for the day and I’m super proud of that! Haha!
Facts are: Benny is about to age out of First Steps. I’m dying over that. (Not really…just being dramatic!) I remember when we went to his pediatrician and he finally mentioned that Benny should probably get into physical therapy. I was horrified and relived at the same time. How do I do this? What does this mean?
This was before all the testing and results we have now. I was just a mom that was getting on my phone and seeing my little baby wasn’t hitting his milestones and month by month he’d get faith and farther behind. I’d make myself sick thinking about how far behind he was and that I was doing everything I could everyday to play with him and work with him with little progress to none.
First Steps has been Benny’s best intervention. All of his therapists are such wonderful and amazing people. I’ve been blessed to get to know them and how hard they have all worked with Benny and BELIEVED in him. It’s choking me up to think that in just a few weeks, I won’t see them like I have. Thank goodness for Facebook. They can keep up with Benny and vice versa. I know that it’s part of their career to step in during times of need for families, but they are just more than therapists to my son and family. They have really been angels that have brought so much hope to us in a scary time. To say I’ll miss them is a terrible understatement.
We have been in the process of working on transitioning Benny from First Steps. Benny went Monday morning to check out Muncie area special needs classes. Ben and I really enjoyed the ladies that we talked to there. Super sweet and lovely. They enjoyed Benny for what little time he was there. They want us to come back for a follow-up in the next week or so, but I really think that in Benny’s best interest at this time he would be better suited to continue on private therapy with one-on-one work and let Ben and I integrate him into social aspects where there are children and other learning activities. We are looking into pediatric rehab which is downstairs from his pediatricians office and also doing speech at Ball State, because truly, communication is going to be the hardest and has been the hardest for him. If he never utters a word, he needs to be able to convey his wants, needs and feelings in some way to the world.
Aside from the school trip, this past Monday was also a double-header with speech and end of First Steps meeting with Benny’s service coordinator. She’s a great lady and even though we only got to meet a few times, I’m glad that I did because not only is she a wonderful human, she in just the short time I met with her gave me so many great resources to help.
There is so many things that I want to put, but just not enough time today. Another busy week will slide into another and the next time I’ll probably write, I’ll have a 3-year-old!
The last thing I do want to mention is that we did go to Riley Children’s Hospital on Thursday afternoon and after a 6 month wait we saw a doctor to get Benny tested for autism. She was so nice. She came in and asked Ben and I questions about Benny to start and then she got out her bag (Benny went right up to it) of toys. She sat down at a little child desk with chairs and invited Benny to play with some toys. As she played with him, she asked us to not interact so she could see how Benny reacted. She got a baby doll out and to explain what the size was, I’d say it was Benny mouth size, because that’s exactly where it went! Haha! She giggled a bit and said something about the baby being tasty. She continued to play with Benny and would stop to circle things on her paper.
I’m sure this is nerve-wracking to parents. They aren’t sure what’s going on with their child and these tests are just so important to move on so you can get your child the help they need. I wasn’t nervous. I knew whatever the outcome was, that Benny was Benny. I don’t know what a clear look at autism is, it’s a spectrum…so how can you? Like, what is normal even? I know I’m not. Well, everyone knows that!
She gave hims some goldfish crackers (his favorite snack) and continued to jot down some stuff. She spoke to us a minute and let us know she was going to go out and total up his score. We played with Benny as we waited and looked out the windows. When she came back in, she had another lady with her and they spoke to us and I felt like they were trying to be easy about how they were going to tell us the results. I told her that the outcome makes no difference to me, that the only reason we were really there was that if he had it, it would possibly help us get better resources for him. She smiled and said she was glad that there were people out there that had that outlook. Ben and I don’t care. I don’t care if tomorrow Benny turned green and had 3 heads. As long as one of those little heads still came up and gave me smooches and wanted to be tickled.
Benny having autism isn’t who Benny is. Benny is Benny. He’s not 15Q24 either. They are things he has and lives with, but just as I’m left-handed, that is NOT who I am. There are so many things that I know will be attached to him growing up. Ben and I will continue to work tirelessly to keep Benny happy and healthy. Making sure he has the resources at hand that he needs and to make sure that when we aren’t here on this Earth anymore, that people are watching over him and taking care of him if he isn’t able to live independently. Things any parent wants for their child.
I also wanted to mention that if anyone isn’t over on Facebook on Benny’s World to head over there: Benny’s World Facebook Page
Until next time, everyone have a Merry Christmas and Happy Holidays!