Roller Coaster Ride
The Downs
I may as well start with the negative so as always I can end on a better note. I guess I will start with the school tours.
Public School
So we went about a week ago to visit the public school Colton would be going to in the fall.Keep in mind I really went in there with an open mind however what I found was difficult to process. First off the classroom is in a portable. It isn't even a real classroom. Then let's look at teacher-child ratio. There are two aides for twelve kids. It's okay but certainly not ideal. While it seemed that it wasn't a horrid place I will be honest. What I saw was chairs with restraints and what appeared to be a school dedicated to keeping these kids in special education not helping the ones who have potential get eventually integrated.Of course I am being a little biased, I truly have no real experience with the public school system and their developmental delay preschools but I just left there feeling sick. I dislike how the public school system defines my child as low functioning when I know he is very high functioning, almost a savant in some ways. I also don't appreciate that he would be only 3 years old and in school five days a week for six hours a day.
ABA School
One week prior to our public school visit we went to tour an ABA school. Not only is this a school where Colton would receive all of his behavioral therapy but they are guiding children to be able to get into regular 1st grade. They divide them up by ability not how they fall on a "normal" scale. In short they would be teaching my son to read, not strapping him to a chair. Also the teacher-student ratio is three teacher/aides to one child. That in itself is amazing. Here comes the negative news, our insurance of course does not cover behavioral therapies including ABA,not only that the school doesn't even work with our insurance company brand. Oh and did I mention it's $1,600 a month if you are self pay like we would be?! Yeah well we are pretty much back at square one.
Upcoming Surgery
I found out recently that a surgery I've been putting off can no longer be put off. It could be as easy as just three incisions and two weeks of healing or it could turn into a much more major surgery with a recovery time of ten weeks or so. This of course means it will be very difficult to deal with my toddler especially because he is so attached to me and doesn't comprehend other peoples feelings or pain (essentially like many with ASD he lacks sympathy). Thankfully my husband will be able to take some time off but I'm just having a hard time picturing how this will work out for my son or I. Albeit without this surgery things could be so much worse for everyone so I'm just going to go in with positive thinking, it's all I can do.
The Ups
Colton continues to be bursting with new words. He is responding so well to therapy at this point my expectations and hopes increase each day. I am so proud of how far he has come and how hard he works. He is really into spelling lately. If he sees a word he spells it out, I could listen to him do that all day! He has started to become more confident in himself as well. I believe that he is meant for some truly great things. He has started to create real bonds, maybe it's only with adults but it's definitely a start. Raising children is hard work, raising one with special needs is indeed a journey but I wouldn't trade it for anything! What's normal anyways? :)
In Closing
Again thank you as always for reading and for your continued support. Autism awareness has come a long way but we still have a long road ahead but I truly believe that someday things will be so much better, more informative, easier. I also truly believe the key to this is education. Every time I encounter a "non believer" or a "skeptic" I do get upset but I also choose to take it as a chance to educate. Let us not forget that some people are just ignorant, what they don't know they fear, they don't understand. We as parents of special needs children are warriors, so are our children. Together we will fight their fight, even if it seems like an endless battle it is worth it! It will always be worth it.
Ups And Downs
I know it's been awhile since I've written an update but as you can all imagine my life can be busy, especially during this hectic time of year. We have been going through a lot some positive and some negative. Like they say you can't taste the sweet without the bitter. I'll start with the bitter so we can get past that quickly.
The Bitter
So I'm sure I have mentioned some of Colton's behavioral problems before but it seems that the older he gets, the more cognitive he becomes the more it seems to manifest itself. It's so hard to watch him feel the need to hurt himself,others,animals and objects. It's almost like he sets up a mission in his mind to be "mean" and can't stop until the task is completed. This is exactly why it is so important to get ABA therapy or at the very least some behavioral help from a therapist/specialist. It's just so hard to have this child who does these things who you can't seem to find the right way to teach to discipline. We can't even get him to look into our eyes let alone know that we are being serious. It's exhausting. It's hard enough for anyone to have a toddler they are a lot of work but when you have an ASD toddler it's like ten times the work and stress. Okay I think I can get past that now, I really needed to vent.
On another "bitter" note we discovered that even though we finally got a caseworker through our private insurance she's just as clueless as everyone else. She had to e-mail me twice to learn about what ABA therapy was and what ABA stood for. Yeah,twice. To top that off we found out we do not qualify for legal aid to try and sue for these benefits due to the fact that we are income ineligible and have private insurance which they don't have "funding" for currently. It seems like we just can't win sometimes.
The Sweet
As I promised there is a rainbow after every storm. Colton is learning many words and very rapidly. While he still can't seem to put two words together it is becoming very apparent just how high functioning and intelligent he is. I can't say enough wonderful things about early intervention. I feel like our son is on his way to being a poster boy for it. He has already come such a long way in a short amount of time and that creates a lot of positivity for all of us.
We also went to our first support group a few weeks ago. It was one through WAAA which I have mentioned previously, again they are a wonderful organization and if you live in Washington I urge you to look into them and join their network. It was so comforting to be in a room with other moms like me sharing their stories and thoughts. I just wish I had a way to enjoy this once a week and not just once a month. I left there feeling so empowered and ready to tackle everything I have to.
We are also getting our own caseworker through DDA and while of course this doesn't mean a whole lot since they already have their hands so full it's at least a good feeling to know that we are beginning the long and arduous journey that comes with waiting lists through the state we are really hoping that something could come through for our son. The basic health need waiver would be a godsend. I will just continue to think positive but practical and say lots of prayers!
Earlier this month we took Colton on his first train ride. It was the Santa Train Special Needs Ride from North Bend to Snoqualmie. It was amazing. Not only did my son smile the biggest smiles the entire time but he actually got over his fear of Santa and had a blast. It was also my first train ride as well and I loved that we got to share that together. I can't wait to take him on more train rides. It was worth it and exceeded my expectations!
In Closing
I know we have a long road ahead and there are still many battles to fight and obstacles to overcome but it is always worth it. Colton will always be worth it. He is truly my superhero. He has overcome so much and continues too. I am so amazed and fascinated by him. He is truly a joy and such a blessing in my life and in every life he touches. People gravitate towards him and I believe that will come to be a great strength for him. As always thank you for reading this and your continued support. Have a happy holiday and enjoy it with those you love, I know I will.
A Very Excellent Video Clip
I just wanted to share this with all of you. I think it demonstrates how effective ABA therapy and early intervention can be. I can't wait to get Colton started on ABA! Also be sure to click "Follow" off to the side of this blog to keep up to date with us! Thanks again for your support!
http://youtu.be/bG0vko7GHDQ
