I alluded to some issues about Cullen a while back and I think this is the time to talk about them. With the end of 2006 so close, I think I just want to put it all out in the open. I'm writing this post because I feel I need to document what a challenge this year was for Cullen. He had to adjust to a new baby sister. He had to deal with an ongoing illness. Plus he is learning to deal with a learning disorder that will always be with him. I'm not trying to get pity for Cullen or us. I just want Cullen viewed as he really is - a sweet, smart, wonderful, loving, and normal boy.
I don't need to go on about the changes Kieren has made in Cullen's life. Going from an only to being a big brother is hard work some days. Cullen loves his little sister! He is so helpful and sweet with her. Cull was so cute the other day. He asked when we can go back to China for another sister! He and I are fine with that, but Dad isn't too thrilled about it. Maybe in a couple of years we'll discuss it again. What a great big brother!!!
Cullen has always had digestive issues. He was a projectile vomitor from birth. He has an out-of-control gag-reflex from hell! He pukes at the drop of a hat. But he also has HUGE problems when there is a growth-spurt involved. We are used to Cullen throwing-up during these periods (or anytime for that matter). We went to a specialist a couple of years ago. They tried meds, did a swallow-study, scoped him, and ran bloodwork to no avail. The longest flare-up lasted at most a week. Until this year.
A couple of months ago Cullen started throwing-up yet again. Nothing new there. But it went on and on and on. He dropped so much weight that last year's school uniform fit again. We were very concerned. The vomiting had never lasted this long. I was called to pick Cullen up from school so many times I lost count. It's not like he did it once and was done for the day. Most of the time the vomiting lasted for hours. Cullen was getting scared to eat, but water would set him off too.
The turning point was the awful weekend that he just couldn't stop vomiting. We ended up "borrowing" meds to stop it. We were desperate! I was not going to deal with the doctor (that story is for another day), so I got him in with Tammy the PA on Monday morning. (We love Tammy!!! She was our lifeline while we were in China! She has known Cullen since he was in Preschool.) Tammy didn't like how Cull looked and referred us to a specialist (again). Of course, the specialist couldn't get us in for two weeks. (Yes, the puking continued.)
When you are a parent, you can't help but go through a mental list of what the problem could be. Was it food related? No. Was it psychological? No. Was Cull having a problem at school or with friends? No. Well, the specialist walked in, asked a bunch of questions, wrote a prescription, ordered bloodwork and an ultrasound, and told us this was a common problem in lots of kids. (Don't ask me what the name of this disorder is. Right now I can't even remember my own name.) It seems that some kids develop this disorder when they hit pre-puberty, sometimes younger. I was told to expect this to go on until Cullen is about 15. I was also told to expect him to be hospitalized about once a year for it. WHAT????
We were told by the specialist to bring Cullen to the ER next time he has a bad spell. The hospital used to have standing orders for kids like Cull. If your child has this disorder and can't stop vomiting, you could just take them in and check them right into the hospital for treatment. It seems the hospital (I'm betting it's really the insurance companies!) changed it's policy not too long ago and now you have to go through all the mess with being seen in the ER first. The GI clinic is trying to get things changed back.
So we had the bloodwork and ultrasound done. Nothing wrong there. The meds the specialist prescribed are not covered by our insurance so Cullen was put on something that doesn't work. Cullen finally cycled down after 6 weeks of puking!!! Was it the meds? I don't think so. I think it was just time for the cycle to end. Well, Cullen was fine for a couple of weeks and then the puking has started again. Tammy (the PA) gave us samples of the meds the specialist wanted him on. They seem to help a bit more. I just hope this cycle is a short one. It's going to be a long 5 years.
One of the major challenges Cullen is facing is a learning issue. Cullen has always had tons of energy. One daycare wanted him medicated rather than work with him (We ran from that place!). We discovered Montessori school was the perfect place for him, but we have always been concerned with his reading and writing. Last year we were forced to switch Cullen to a Christian school (huge staffing change and lots of uncertainness at the Montessori school he was at). We all knew it would be a rough year, but Cullen had a great teacher and worked so hard.
During the second half of 3rd grade, we became increasingly concerned. Alarmed even. Cullen was falling way behind and was hiding unfinished work. The teacher said he had some minor signs of ADHD, but so do most kids his age. We thought he had dyslexia (as I do) so we got a referral for a psych eval. Jim, the psychologist, was great! He tested and tested and tested Cullen (of course none of this was covered by insurance!). Even though most tests came back normal, Jim knew something wasn't right. So we were referred to have a language eval, an auditory eval, and an OT eval. No, Cullen wasn't dyslexic or ADHD. That's when we heard about CAPD (Central Auditory Processing Disorder) for the first time. This is a lifelong learning challenge (I refuse to use disability because Cullen is NOT disabled!).
The short of it is that Cullen has problems getting things out of his brain and onto paper, and needs to learn things a little different sometimes. Sometimes he needs more time to write his answers and sometimes he is allowed to dictate things for me to type. Sometimes he needs the directions read to him and sometimes he needs tests/assignments given to him in pieces instead of all at once. He is going to Occupational Therapy once a week and really doing well. Whatever they are doing is really starting to help. The staff at school has been wonderful to work with! They are willing to do what is best for Cullen. And Cullen is really starting to gain control over his learning!!! It has been a lot of work, and will be for the rest of his life. Cullen will develop his way of learning things. He will figure out what works and what doesn't.
I know this is a long rambling post, but I wanted to share that life isn't perfect. We never pretend that it is. My children aren't perfect and neither are we. We are working with Cullen to help him through these rough times and he is learning to take things as they come. The best things in life are worth fighting for. In the long run, Cullen will be the best he can be. He will be Cullen, a unique individual who can be proud of whom he is. I know we are.
(Harry in Kieren's stroller & Pumpkin in Kieren's car)
Is that my printer? I haven't seen the top of that of ages!
O...M...G... I can see my desk!!!!
