Tuesday, June 22, 2010

Over the rainbow...somewhere...somehow

Yesterday, Kenny started his first day of preschool. He is going to the summer program for first step. The day started off...well, let me back track a little...all night, I kept having these thought of what happens when I put him on that bus and something bad happens to him? What if the bus is involved in an accident? What happens if the bus driver forgets him on the bus? I know...these thoughts are a little over the top, in terms of "what ifs", but really, what if? He is only 3. He is ACTUALLY not fully three until his due date...August 25th. He is non-verbal, so he cant talk to the bus driver. He has epilepsy...what happens if he has a seizure on the bus or at school? I feel so bad thinking these thoughts, but he has fought a loooong battle. He beat the odds (0-17% chance of survival for a 23 weeker) I have worried for 3 years if he was going to make it through the whole 129 days in the NICU, next cold/virus or seizure. He has surprised us all...but I still worry for him. So, back to my story, I wake up at 6 am, mind wandering, lay in bed for an hour trying with all my might to sleep through the whirlwind of thoughts...even if it was just for an hour...didn't happen. Jumped from bed, went downstairs and onto the computer. The typical news online...the horrible oil crisis, murderers, the new build that Extreme Makeover Home Edition has started (still hoping and fingers crossed for us this season.)...then onto Facebook. Hmmm...not much activity, everyone must be on vacation...ahhh...yes...white sandy beaches, the crashing of the waves, the smell that is a combination of fish, salt and suntan lotion....one day...one day Tony and I will take all of our kids there for the first time, just like my parents did with us. SCREEECH...back to reality. Sorry I got sidetracked. lol.

So I went upstairs to get little man up and ready for the bus. Got him dressed without a temper tantrum, hearing aids in...check. school bag with diapers, formula, Diastat (in case he has a seizure) and his bottle...Check, check, check and check....waiting for the bus...should be here at 8:21...it is now 8:40. I wait a little longer...now its 8:45! I called the transportation dept and asked them what time Kenny's bus should be here and they proceeded to tell me that the driver just didn't stop here because he didn't get picked up all last week. Ha. Well I proceeded to tell them that all last week, Kenny had a bad ear infection and strep...I called in every day to tell them not to come pick him up...why the H*ll would they just assume that he wasn't going today...He was ready and waiting...I never called to say otherwise! So...I ended up driving him, which was fine by me...I wanted to see the class and who his classmates were going to be. And that is exactly what I did. I walked in with him and took one look and thought to myself...uh...nope...this isn't going to happen. These kids are so much bigger and more advanced than Kenny. The teachers reassured me that he was going to be fine...and I left...with tears in my eyes.

11:30, I go to pick him up. I go meet him and his teachers at the door of the school. He was fine! The teacher told me that he had a really good day. He stopped crying as soon as I left (which I knew he'd do), and was actually playing with the play kitchen they have there. I am so relieved that his day went well. The teacher wanted to reassure me that because it is the summer program, they have 3, 4 & 5 year old kids in his class and that Kenny has a lot of one on one time with the OT, PT and Speech therapist. I felt better about that. I know that because we have such a large family that he is very well socialized with kids of all ages, so its not that aspect that I was concerned with. It's more along the lines of how do I know what to do with him. Yes, he is behind, but is it because he cant hear, express himself with speech, or see very well? Not to mention that his coordination is off and that his fine motor skills are limited. No one has come out and told us that he will be mentally disabled all of his life. But on the other hand, the doctors have said he is extremely delayed.

For all of you that have had a child like Kenny, what would/did you do? I don't want to baby him but in the same token, I don't want to put him in a situation where he doesn't know any better. I don't know what his brain is capable of. His mental capacity. I plan on going to his Comprehensive care appt. today and have a heart to heart talk with his doctors. I just need to know what we are faced with. I am so sick of hearing, "because he is such an extreme premature child, we are just not sure what to expect." I know it is what it is, but someone has to have some idea of what we are looking at. Is he just a boy with a normal mental capacity that is trapped in a body that cant express himself? If that is the case, what do we do? Sending him to school, will it build up his immunity (unlike this past school year) eventually, or harm him more?

So you see, this is where I am at. This is where my mind has been. So if any of you have any ideas or stories that you would like to share...please comment...I think I just need some reassurance that we ARE doing the right things with Kenny. It's such a different world than having a normal, healthy child...and again, I thank God for letting me have him and this new world. It is so exhausting and challenging, but I love a good challenge and it has opened my eyes, my husbands, and my kids eyes to what and who really matters in life. Somewhere over our rainbow big things are happening...even if they are the smallest.


mpence said...

We are dealing with very different disabilities with our children...and I really don't have advice for what to do, or what is the right thing to do...I am trying to figure those things out for myself!

If Kenny is getting lots of 1 on 1 with therapists, that is a great thing!

I choose not to put Callie in school because she would get a single 20 minute OT session each WEEK...she is only 3-5 months delayed in fine motor. She would get nothing as far as PT, when she is 60%+ delayed in gross motor... I asked the school about it only to have them answer they have wheel chairs available for use at school for disabled students, but they want her to be able to write when she hits kindergarten... not the highest priority for this homeschool mom who is ok with delaying writing for her!

You know your child the very best. No one knows what would be best for this precious little soul than you do. Trust yourself. You are his best advocate!

Michelle Alex said...

Almost everything you said is exactly how I felt 13 years ago. Monique wasn't premature but she was born with a rare genetic syndrome. She was/is extremely delayed. She started school when she was 2 and I was feeling the same things. She is an epileptic, she had never been with anyone else but family. I was scared to death on her first day! Monique had been receiving all her therapies at home until then. I have to say I spent at least two days a week with her at school for the first six years,lol. I popped in unexpectedly to see how they were treating her since she was non-verbal also. I demanded to see background checks on all her teachers and aides. I was a nightmare parent!

I think looking back now that it was the right thing to do. It was very hard for me then. She wasn't even old enough for regular school and I felt terrible sending my baby to school. But, it was the best thing we've ever done for her. Even though she's still severely delayed, she's 15 but mentally about 5, it was the best start for her. The brain is an amazing thing and her getting all the extra stimulation and therapies have helped get her to where she is today.
So, although it is really hard for you, it will be to his benefit in the long run.

I will continue to keep your family in my prayers :) (((((HUGS)))))