Sunday, May 30, 2010

Autism hot button (warning very long and rambling)

Before I start I know this is an hot button topic especially with parents of autism kids but I want to express my thoughts.

I am currently watching Dateline NBC and Matt Lauer is doing a special on autism, vaccines and G.I. disorders. They mention specifically Dr. Wakefield and how he has evidence that autism could be caused by vaccines, specifically the MMR. While I am a big believer that children should be vaccinated, the more children that are vaccinated the less likelihood of outbreaks of disease that could potentially cause suffering or death, I do worry that vaccines harmed Lex. I'm not saying that by any means he will not finish his vaccines for kindergarten when it's time, he most definitely will, I worry that the sheer number of vaccines he was given before his second birthday may have done more harm than good. I vaccinated him completely on time with the exception of one dtap (diptheria, tetanus and pertussis) and one hib (haemophilus influenza type b) and those were due to the resident he was seeing as his primary care physician forgetting during his well child visits that he needed them. Lex's kindergarten vaccines will spread out more because he does have behavioral and developmental fall backs when he gets shots, any shots. We gave him bicillin in April for a case of strep (far easier to poke him once than try to coax him to take oral antibiotics 2-3 times a day for 5-7 days) and we saw him slide back in behavior and we lost the sign for "more". I think for him this is the natural progression of his autism in combination with the "terrible twos".

I give vaccines every day I'm at work and the bulk of the children show no signs of developmental disorders, most of them being on the current CDC vaccination schedule, I can only think of 3 other children that Dr. Whitworth sees (she is also Lex's doctor) that have marked developmental disorders, she sees the most children in our clinic. I can't honestly believe that vaccines cause autism because there is no significant research connecting the two. I believe it may trigger traits that are already there to become more pronounced (I think this is the case with Lex). I tell parents honestly that my child has autism and he has been fully vaccinated but that I don't believe the vaccines caused him to be autistic. (As a matter of fact there has been more research pointing to changes in brain development during the second of trimester being related than timing or types of vaccines given).

In other news the transition meeting we had last week went well but was very overwhelming for me. We found out that pending a re-evaluation by the school district this summer he will start a program at my old elementary school going 4-5 days a week for a half day each. The school district will bus him there and back to daycare. He will most definitely continue speech services and possibly occupational therapy. There is also a chance that we could have a speech therapist come see him at daycare but I think if he will be attending "school" that much we will do much better at not overwhelming him if we just do the half days. I have come to the conclusion I would also like to get him involved in another free local program for more speech services. I know he is progressing but he's still pretty far behind. We also sent in paperwork for another program based in our area that will help us with a diet and supplement program. It can't hurt him to take some of the crap he eats out of his diet (the kid can pack away M&M's and sugar like no one's business).

We recently saw his doctor to run labs to make sure his body could handle supplements and a diet change. So far his labs have been normal (we have gotten results for his kidney and liver function tests) but we are still waiting on levels for copper and zinc. We also addressed our concerns about his aggression levels and recent difficulty sleeping. Like we thought she thinks they may be related and she thinks that starting melatonin may help address this on nights he's particularly restless. We haven't started it yet because he has pretty much crashed of exhaustion that last couple of nights due to busy days but I think we may give it a shot tonight. I just hope he doesn't get any major side effects from it, I know in the past I have had some daytime sleepiness from it. She also recommended that we continue to try to wear him out and get him to bed on time and we do most nights.

He has been moved back to the 18-23 month room at daycare and seems to be loving it. With the exception of Friday afternoon they reported a decrease in aggression and an increase in eye contact (they think Friday may have been related to the 3 cupcakes he had at snack, he stole some from the other kids, like I said the boy loves sugar). I'm very happy to have him back with Lisa and Dani in that room, he just seems happier overall, we only had one meltdown during drop off this week and it was Tuesday. Karolyn told Nate that Lex did fine once he realized I was gone. I think it also helps that I've made it a point to sit down and chat with his teachers during pick up at least once a week to check in and see if they need us to do anything different or if we can help them with anything.

On my end things are still a little rough going with Nate but we are going to meet with our therapist during my session on the 9th in hopes that we can have an impartial referee help us. I think the current meds are helping him but he hasn't been sleeping since he has been trying cut back on some of his sleep aids. Hopefully once he's sleeping again we'll be able to really work on our relationship.

I'm also still very sore from my ganglion cyst removal 3 weeks ago. So far this is the only surgery I regret having. Had I known I was still going to be this sore I probably would have let the cyst be for a while longer (like until Lex is walking everywhere regularly). My surgeon's partner recommended resting it and icing it all weekend but that hasn't happened since we attended my uncle's funeral yesterday and Lex has wanted to be with me all day, not to mention my dog being trouble earlier when we went for a walk and pulling me all over town.

I am focusing on losing weight and getting healthier again. I know I've been down this road in the past but now I have help from my doctor and my dog. My doctor prescribed phen.termine for me to help with my out of control appetite (likely related to my pcos and insulin resistance). I have noticed a difference since starting it. I have set a personal goal of walking with Bella at least 13 miles a week. I figure she loves being out for walks and I can use the time to exercise. Besides she loves to chase squirrels, birds and cats so I'm always pulling her back on track, that uses a lot of muscles as she is no tiny puppy (50 or so pounds).

We are also signed up for our first autism walk! We are very lucky to have many family and friends agree to walk with us already. It's not until September but most of Nate's family has agreed to make the 3 hour drive to walk with us on "Team Lex". I can't wait!

Sunday, May 23, 2010


I've always been a worrier, I remember worrying when I was a little kid going to kindergarten (I thought I was never going to make friends since my best friends went to a different school) and now I've taken it to a fine art. I guess being Lex's mom has been making me stronger but a bigger worrier at the same time. Tomorrow is Lex's IEP for the transition to the school district. I'm more worried about this than I was his initial IEP for birth to 3. Nate has to leave for work 15 minutes after the meeting is supposed to start and I'll have a house full of specialists (birth to 3, daycare teachers and school district) and I'm trying to figure out the best goals for Lex but the whole thing may change over the summer since he won't be transitioned over until October when he turns 3. I'm hoping we'll have to change his goals because he'll be further along with speech and behavior. Speaking of behavior we've really hit a wall. He has recently decided Mommy makes a great punching bag and teething ring. My parents gave us a great recommendation that when Nate is home he is supposed to take Lex away from me until he can calm down enough to give me a hug and not hit/bite anymore. The only thing that really stinks is that Nate and I work opposite shifts most of the time so it's just me and Lex most evenings. I try to separate myself when he gets aggressive but I can't just leave him and go into the kitchen (it's gated off to keep him out of trouble) because he typically gets aggressive when I'm trying to keep him out of trouble (most recently opening the gerbil cage and squeezing them). I'm just at a loss because I know he gets the same way when he's at daycare and I want to be able to give them recommendations.

On an up note he will be moving back to the 18-23 month room on Tuesday for sure. I hope this will help cure some of the problems he has at daycare.

Saturday, May 15, 2010

Ups and downs

I feel like I've been on a roller coaster a lot lately and the loop de loops are getting old.

I'll start first with Nate. He's been terribly depressed lately and none of the medication or supplements he's been prescribed have been working. I can't get him out of bed or to help around the house much and it's frustrating me. I just don't know what to do for/with him. I don't feel like talking is getting us anywhere so I'm at a roadblock. I know he says he's trying but I have a hard time seeing it when I'm working so hard to keep the house kept up with a swollen and bruised hand/wrist (had a ganglion cyst removed on 5/6/10 and now I keep overdoing it).

Life with Lex has definitely been interesting lately. We have great days and really awful ones a lot lately. Yesterday he was a doll, we had a rough drop off in the morning but after spending the day in the 18-23 months room (his regular room had too many kids) he came back to me sweet as pie. Miss Lisa had bad news for us though, he won't be moving back to that room until June, they thought they had figured it out to get him back there sooner but due to numbers he'll still be in the 2 year old room. Lisa was very apologetic but it still stinks, I want him to be where he thrives and now we have to hold off on that. We came home and had a quiet dinner and after bath he let me do his brushing protocol, something we haven't been able to do for a while. Bedtime was later than normal but he went down without a battle.

Today we went to the zoo with a few of my friends with work and I can definitely see where he is different than other kids his age. Most of my coworkers' kids are in the 2-4 range and were interacting like crazy. Lex wanted very little to do with them. He was only willing to play with my friend's daughter, probably because she's very cute and pretty quiet compared to all the other kids we were with. I couldn't get him to play or stay out of trouble for anything, any change resulted in a temper tantrum with him kicking and pulling my hair (I will be bald by 30 at this rate). The good thing is since we ate lunch before going to the zoo he came home and took a really good nap, allowing me to take one too.

The 24th we have a meeting to start the transition process to have Lex's therapy be through the school district, I'm nervous as all get out. I know that the school he'll be involved in isn't far from home but I'm worried about how he'll handle the transistions, they are not his strongest suit. I did invite someone from the daycare to join us since they are a huge part of his care team, hopefully someone can make it. My next goal is to get him involved in the local aut.ism treatment and resource center. We have an appointment with his doctor to get the labs done prior to the first appointment at the center. We are also starting a gluten free diet for him in the next couple days. I opted to do just the gluten because he is a big milk drinker and I feel that he needs calcium that milk provides. I just hope I'm doing the right things for him.

Thursday, May 13, 2010

The Ten Commandments for Parents of Handicapped Children

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can't be a super-parent 24hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts when ever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Author unknown

Sunday, May 9, 2010

What it means to be a Mom

My mother is a wonderful woman. She is who taught me about love, tenacity, joy and sadness. She and I haven't always seen eye to eye, very rarely did we back in my teen years. My mother is strong and determined but always supportive. I learned from her how to work hard and how to play just as hard. My mother is my closest friend now that I'm an adult even if when I was younger I thought she was doing the things she did just to get a rise out of me.

My favorite moments with my mother have been rollerskating, playing volleyball in the yard, seeing her immediate love for the grandson she declared would never call her "grandma" and seeing my son play with her the way I remember playing with her as a child. We have endured many hard moments together. My grandfather's cancer diagnosis, my grandfather's passing, the days my brothers shipped off to boot camp, the day my brother deployed to Iraq and the day I had my miscarriage.

Our relationship has never been and most likely never will be perfect but I wouldn't change it for the world.

Lex woke me up bright and early this morning, I think he couldn't sleep and the dog woke him to get me up to take her out but I wouldn't have changed this Mothers Day for anything. I got to spend quality time with my favorite 2 1/2 year old. We went to lunch with both of my grandmothers and my parents and now my boys are down for naps while I relax and paint my nails.