Monday, June 29, 2009
Well, as most of you know, Carson started HBOT (Hyperbaric Oxygen Chamber Therapy) last Monday. On Wednesday, he was noticeably wriggling and grabbing at his penis after the session while he was at his next therapy. Ms. Nicole asked him if he needed to go on the potty. He did! He peed on the toilet for the first time ever! He also said that he doesn't want to wear a diaper anymore. He has been in big boy underwear since Wednesday...of course with some accidents but he has gone on the potty several times. This is HUGE. I cannot believe it. It tells me that he is actually feeling the sensation of having to pee. He is doing a lot of therapy this summer so I am sure that it is a combination of things but I have to attribute some of it to HBOT. It is the only thing that changed.
We are so proud of him and so happy.....this is now sparking interest for Griffin too. He actually went pee pee on the toilet for me yesterday....OMG...if we can get them both out of diapers this summer, it will ROCK!
We certainly don't want three in diapers!!!
I have really high hopes for this HBOT. I have heard a lot of success stories. I'm trying not to set myself up for disappointment but I really think that we are going to see good things.
After going to that vaccine seminar Friday night, I really feel even more that this therapy will help. We learned how the vaccines can cause "mini-strokes" in the brain, which cause that part of the brain to stop working but not die.....it basically is loss of oxygen and blood flow to certain areas of the brain. This therapy pumps oxygen to those areas so it would make sense that it would help bring them back "to life."
I'm not going to get on my soapbox about vaccines because I know that some people find me annoying and probably crazy but I have to say that there were points in the seminar Friday where I had lumps in my throat because I know in my heart that Carson would be 100% healthy had we not gotten him those TOXIC vaccines. The stories that we heard made me so grateful that he is only dealing with this high-functioning Autism and that he is getting better. Had we not stopped vaccinating, I'm afraid to think of where it would have taken him. It's not just one vaccine...it's the build up of the 38 that they want in these little bodies by the age of 5.....so TRAGIC!
Be careful....and even if you disagree with me...just be careful. I know that all of this could have been avoided had we been more educated sooner.
Because I believe I know the cause...it makes me even more certain that Carson will recover from this.....
Thanks for reading!
Thursday, June 25, 2009
Saturday, June 20, 2009
When we met, Jay and I lived a very carefree and fun life. We enjoyed our freedom and traveled, shopped, socialized and kept busy. When we had Carson, I really thought that I would change more than he would. The truth is, Jay has changed more than I have.
Five years later, Jay is perfectly happy hanging out with his kids over doing anything else. I have to force him to take time for himself and to occasionally do something with friends and family that do not involve the kids or I.
Since he works all day, all he wants to do is see the boys when he gets home. He is not preoccupied with sports or personal travel. The only thing he really does like to do is Facebook. That is his social outlet and he enjoys chatting and catching up with friends that way.
Sometimes I think he needs to get out more. I think he needs to take more time for himself and relax. It might sound crazy, but I am the wife talking him into going out when the invitations arise. He is just content with being at home.
If you knew Jay five years ago, you know what I am talking about. He was always up for an event, party or night out. He still enjoys these things but rather do them once in a while vs. all the time. What is really sweet, is he also does not like to do these things with out me. He will take a night out with me vs. a night out with the boys anytime. Believe me, I know this is rare and how lucky I am.
When Carson was first diagnosed we were so scared. I started reading the statistics that parents of children on the spectrum have an 86% divorce rate. We were and are determined to not add to those statistics. The best part is, when most dads (sorry it is true. it is mostly the dads) unplug with a special needs child, Jay did the opposite and charged ahead. He has been the driving force on so many of the therapies we have tried and will try. We have both found our role in all of this and have our areas of expertise. I am so lucky to have a true partner in all of this. Most of all, Carson and Fin have a dad that they know loves them without bounds and will do anything for their well being.
When Jay started wanting another baby a few months ago, I will be honest. I was not as ready as he was. I was a new stay at home mom just trying to find a new routine. After consideration, I realized that I could not deny him of the BEST thing he does. Yes, I am the one pregnant and the one that will deliver but Jay is also right there by my side all the way. He would do anything for the three (almost four) of us. The closer we get to delivery, the more and more excited I get. I can't wait to see him with a daughter. I know the love and protection will be the same but she too will bring out another side to him that I have not see yet.
Happy Father's Day Jay! Thank you for all you do for all of us. I hope you know how loved and appreciated you are. I am so lucky to have you on this journey with me.
I Love you - Em and the boys (baby girl too)
Happy Father's Day also to all the other wonderful Father's in our life!
Monday, June 15, 2009
Yep, a whole week and a half without an update. Sorry, if you have been checking in daily just chomping at the bit to see what we are up to. (please note the sarcasm!)
We have been having some great fun and keeping busy. I mentioned in the last post that I was worried about filling up the hours in the day. Thank you for all of your great suggestions. In turn, I feel as though I might have over booked us a bit last week. I will try to have a more even balance this week as Carson starts camp this week too.
Carson will be going to a camp called Sensational Kids. It is a camp at his OT center and the camp is centered around sensory processing. I am very excited for him and think he will have a good time. From what I have been told, there will be some kids higher functioning and lower in his group. It will be a good balance for him and I hope that he will try to emulate the positive behaviors of the higher kids. Camp runs twice a week for six weeks.
This is in addition to his on-going OT and speech twice a week. So, in total he will have at a minimum 6 appointments during the weekdays.
To add, we start HBOT next week with the anticipation of have two sessions six times per week. I am going to leave it up to Jay to write more about HBOT. He is the expert on it. We are very excited to start this new therapy with Carson. It has show tremendous benefits in treating Autism.
I truly feel so grateful that Fin is to young to really be angry about how much time he spends with us, taking Carson to all his appointments. Almost daily I get him some fries and an orange drink to keep him happy but the truth be told, we are all living around this schedule and for us it is okay. For now. Our prayers is that it all pays of.
So, starting next week, the hours in the day will be fewer to fill as, we have lots to do. Today Carson starts camp and I can't wait to see how he does. He has a favorite person at the OT center. His name is Mr. Nick and Mr. Nick decided that he would be Carson's one-on-one aide for the camp. Each child gets a one-on-one aide and this is going to make Carson so happy. He just loves Mr. Nick.
I do have some photos to post as soon as I can. Last week we had Adrian's bday, went swimming at Aunt Carols house and also went to Stony Creek's nature center. We really had a nice time doing all these things.
Thanks for checking in - Em
Edited to add:
Carson loved camp. I heard from both his OT's and Miss Nicole that he did a great job and was actively participating in the activities. As I am sure you know, that makes my heart sing!
Fin was very heartbroken to not be going to camp with Carson. I had to bribe him with an ice cream cone to cheer him up. We went to Cold Stone where he picked out "pink" (strawberry) ice cream. He loved it and I loved my time alone with Fin.
Friday, June 5, 2009
I am happy for Carson that he is out of preschool. He was totally bored with it the past few months anyway. I am happy to be home with my kids (my first ever summer of not working). I am happy that we can play outside and make memories. Truth be told, I love being with my kids!
By 8:00 this morning they were begging to go outside. They are acting bored already and I have to tell you, that makes me panic. Carson must have asked me 15 times if he could go to Kindergarten today. (Try explaning the concept of time to a kid on the spectrum. Especially when what they want to do is three months away.)
I do not have it in me to be the parent that lets my kids wander the sub unsupervised. Lord knows, that Carson is not okay to be left alone. Fin is only two so... what does that mean.....
It meas whatever they do, I do too.
That is okay most of the time. I am use to spending my days from 12-5 or so painting, playing, making forts, etc. I am lucky that my husband is pretty low maintenance in the housework department (just don't ask him to do any, and he will not care what you do in return).
It's just these four little extra hours that might take me over the edge. At some point I have to do laundry, clean the house, eat bonn bonns and watch TV (ha ha).
Yes, we do have lots of activities planned for Carson this summer. Some days will be easier to fill than others. He will have camp and of course the usual OT, PT, Speech. What a fun summer for a five year old!!!!
Yes, we do have Ms. Nicole and she is a HUGE help. However, it is not her job to watch Fin. (although she is VERY helpful with him too)
So, any suggestions on how to make this work? I am sure I can't be the only mom out there that is beginning to think year round school is a great idea.
Tuesday, June 2, 2009
It is a word you never want to hear. Especially, if you have a child on the spectrum.
We have been very lucky the past three years. Well, it has not all been luck. We have worked our behinds off in helping our son and in return he has responded by doing really well. He has worked harder than both Jay and I combined. We have seen progress that many, many kids on the spectrum don't achieve. We have been making gains for three years and we know just how amazing that is.
A few months ago (three to be exact), something changed.
It has been confirmed to me today that Carson's sensory processing is not what it was six months ago. This is not good news. This is in all reality the R word.
I knew that Carson was having a tough time regulating and his spiking episodes were more frequent. This means that Carson has been pretty unhappy and difficult to handle. School has been affected. Home life has been affected. This has occurred even with twice weekly OT and PT sessions. This occurred even with sensory activities at home as well.
We have been racking our brains to try to determine why/how this happened. I have written a great deal about sensory processing before. It is so very important for daily living and functioning in society. It is VERY important for success in school.
We are working with all the right professionals on what to do. All our summer plans are being rewritten. More research will be done, changes will be made and Carson will have to work that much harder but I know we/he can get it back.
I still have faith and hope and believe that this disorder is treatable. I know that some don't ever regain what was lost. Some kids regress further. That scares me more than I care to admit.
We love him and accept him just the way he is but I will not give up on him. Jay and I have and will always do whatever we can to give him the greatest opportunity for success. As long as he is happy, we are happy.
The toughest part is -right now, he is not happy.