Happy New Year.
Bloggin's not been a priority lately. Juggling everyday stuff has gotten in the way of that (that and facebook).
Happy New Year. I am hoping to have a HEALTHY NEW YEAR. (So far not off to a great start on that one!) (This latest cold has been around since before Christmas and doesn't seem to want to leave me!)
2010 will sure be something! It is a big birthday for me (I'm debating on whether I want to celebrate it or just pretend it doesn't exist!)
Ryan will make his first Communion this year, so we will be having a big party!
This year as it starts out, I almost feel like a normal mom - to normal kids. For those of you who don't have special needs kids, just realize how blessed you are. I am truly blessed for the kids that I have, but being the mom of special needs kids sometimes makes me feel so defeated and without much support or empathy. While I am lucky that the issues we deal with here are workable, and we could be so much worse off, at times I do wonder about my sanity. Lately though I have started to feel more normal. The past couple of months, i have caught glimpes at "normalcy". It is an odd place to be at. Trevor no longer has Speech paths, OT's, nutritionists coming weekly - no more constant Dr. visits. He just gets speech once a week at the pre school. Ryan is no longer getting notes from school daily and we no longer have daily melt downs anymore. I have come to a point that at times I feel like I have normal everyday life and deal with every day mom issues from typcial children. On days that seem everything is pretty normal I think how great life is. Ryan is doing so well on his medication. He has a teacher that is so much more suited for a child with his issues. Trevor is making small gains in his wieght, and seems to be doing ok at pre-school. Speech, well not sure what to think of his speech - I guess its coming along. He still is off as far as his crying jags that go on for up to 40 mins after naptime and he still has sleeping issues and being overly sensative to EVERYTHING especially when he is sick, but I am having periods of time where I almost forget that he has sensory issues, or speech delays or Failure to Thrive issues. He is a very stubborn little boy. He is a very mischevious boy by nature. He is very smart and wants things his own way. He wants to be involved in EVERYTHING and wants to constantly be talking and asking questions. I do believe that out of all three of the boys, he is the one who requires the most energy to keep up with and to keep out of trouble (he is way to smart for his own good). He is a momma's boy and wants to always be with me or with Ryan. Ryan and Trevor seem to really know how to press each other's buttons. When they play together nicely, it is wonderful and makes me smile ear to ear - but most of the time Trevor just isn't a very reasonable sharer/player and then it makes Ryan get angry - then there are lots of yelling, and tears, sigh. The good side is that Stephen and Ryan play nicely together ALLOT. They seem to have teamed up together to not let Trevor in. Trevor does have a tendency to bust up any lego buildings they have put together, deletes pictures on their cameras, turns their gameboys on and runs the charge down and has been known to rip up masterpieces they have made. Trevor really is a force to be reckoned with! I'm at my witt's end a lot of the time trying to keep him from destroying the house and protecting my stuff and the boys stuff from him. 2 1/2 hours of pre school 3 days a week isn't much time away from home, so Trevor is home a lot missing his brothers so he is off to try all their things while they are away!
Trevor is my walking tornado. Ryan has become my quiet creative child - still prone to getting overly upset at small things. Stephen is my bright, shy, sensitive one with lots of friends who keeps allot of stuff to himself. I think they are rather "typical" and feel very blessed that when I think of my kids right now I think of sensitive and bright, creative and quiet and a walking tornado - no longer the first things that come to mind are "failure to thrive", speech delayed, ADD, developmentally delayed. It is nice to have come to a place where we do have some "normalcy" in this family. their issues don't seem so life threatening. Their futures don't seem so unpredictable and possibly a struggle to get through.
We went to Mike's aunt for a holiday get together and she couldn't believe how quiet and well mannered Ryan was. My mom said the same thing. It's been almost a year since Ryan was diagnosed with ADD (even though we knew that was most likely what we were dealing with) and he is doing wonderful. He is one of the best behaved kids in his Cub Scouts Den. Academically he is doing all right. He has definitely become a more serious boy and he is more thoughtful and he is not as impulsive as he had been.
Trevor is no longer getting tons of service from Early Intervention and I think that he really missed all that attention. He definitely goes out of his way to misbehave at times. He does get bored easily and is constantly wanting to clean and do whatever it is that the rest of the family is doing. I no longer fixate on everything he does or doesn't put in his mouth. His hair is growing, he looks healthy. I did get really overly anxious about the latest H1N1 scare. And for a period of time I was obsessed with the thought of him getting the flu. We did get a priority vaccine for him and the rest of the family was vaccinated too. We have been rather sickly November and December, but no flu and no strep throat which has been invading our school and our friends have been hit by them.
so for 2010 I feel very lucky where we are at when I look back at where we were just a year ago. We do have upcoming visit with the endocrinologist in March as well as Trevor's opthamologist in March too. We probably won't be going back to see the new Gastroenterologist we saw in December. He recommended a consult with an OT, and a nutritionist. While I'm sure we could benefit from their expertise, we cannot afford their astronomical fees - over 400 for a 2 hour eval from the OT and then ongoing treatment is guesstimated to be at over 300 each session. His health situation is no longer as bad as it had been and I have learned allot from our time with our nutritionist from Early intervention, and had learned from our OT from Early intervention that I feel okay about not pursuing these therapies anymore. I wonder who can afford this kind of therapy. And don't even get me started on the lousy insurance companies and how terrible it is that speech therapy is not covered, nutritionist consultation is not covered for Failure to thrive patients, SPD (Sensory processing disorder) therapy is not covered. Nor is our visits to the phychologist at the ADD clinic that we will have some office visits.
I still am struggling with my health. Still very sleep deprived, still don't know what caused my heart irregularities, still having trouble maintaining my weight, and chronic and excessive fatigue. Maybe this year I will get some answers on myself. The thought has crossed my mind that the stress I had been under last year might be a big factor in my health. Dealing with my dad's death, Ryan's ADD diagnosis and fighting with the school for him to be treated right, Trevor turning 3 and aging out of Early Intervention and still not gaining the weight he should and still speech delayed - those things can all make a person a bit anxious to say the least.
As this new year starts out, I am feeling optimistic about it. I hope to lose some weight and get healthy, get my house organized, and keep helping my kids reach their potential and deal with their issues and struggles. I do have a lot on my plate. I don't know what I was thinking when I decided I wanted to co-chair the Sweetheart dance at Trevor's pre-school, among other things I added to my already big list of things on my to do list. but that's what most of us who are mom's do. One of the things on my "to do list" - get Trevor potty trained, get Trevor to sleep in a big boy bed, and clean out my basement. Just a couple of things!
I hope 2010 is going to be a great year filled with lots of great memories for my family and for yours.
HAPPY 2010 to you! May you have great health, great joy, and great prsperity in this new year!
My Life as Mom to Three wonderful boys Stephen, Ryan (OHI) and Trevor (diagnosed with FTT - failure to thrive, SPD and Speech Delayed). Life is challenging but wonderful with 3 boys!
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Books I have read
- Friday Night knitting Club
- The tale of Edgar Sawtelle
- Island of Lost Girls
- The Prizewinner of Defiance Ohio
- Nineteen Minutes
- Kite Runner
- Angry Housewives Eating Bon Bons
Hi,
ReplyDeleteI stumbled onto your blog and thought I would leave a note!
I too have three boys, with as many diagnosis as you--including SPD. :)
And I completly relate to your experience with insurance/fees/therapy. My oldest has been in OT since he was 4, and then each of the other two have had a turn, and evaluation and some therapy too...10s of thousands of dollars of care.
But, it is worth it! And I am not sure where you are, but $300 a session for OT is WAY TOO MUCH. We pay less than half with insurance paying 80%...might want to to look into other options if your son could benefit from it still!
Thanks for sharing your story,
Hartley
www.hartleysboys.com
Hi Michele!! I am so happy that Trevor is doing awesome!! All of your boys are so handsome :) :) I hope 2010 brings you much happiness my friend :)
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