Best part of my day.

Since I know sometimes I can have a hard time seeing the good things in my life I wanted to share the best part of my day.

It wasn't the fact that the doctor I work for wasn't on call. It wasn't that instead of the 19 patients a day we've been seeing we saw 10 out of the 11 scheduled. It wasn't knowing that my brother was picking up his puppy and that meant no more puddles on my floors. It wasn't even the peanut butter bar the doctor I work with bought me.

It was the 10 or so minutes I spent on the floor just cuddling, playing and laughing. I didn't focus on the fact he was doing so well at holding his attention. I didn't focus on the dozen or so finger prints followed by occasional drops of spit on my glasses. Instead I focused on his laugh, so contagious it makes me smile just to think about it. I focused on the kisses that turned into playful bites on my cheeks and shoulders. I focused on what an amazing child he is, how lucky I am to have him and how excited I am to be home with him all day tomorrow, even if I won't feel that way after a full day of trying to keep him and our dog out of trouble. Tonight for that short while it was just about a boy and his mom and their shared joy, laying on the floor, making noises and memories.

Frustrated

Lately I feel like I've been stuck between a rock and a hard place.

Lex has been a bit more difficult than normal because I haven't been getting my mid-day break since he has started the process of quitting his afternoon nap, which makes him crabby by 5pm. He has also figured out that he is big enough to climb out of the tub during bath time. The first couple of times he climbed out of the tub I thought it was very cute but now I'm not terribly fond of the drenched floor and 2 year old streaking through the apartment. I am proud of the fact he's making strides developmentally even if it's not through speech. He has also started using the sign for cup (well his approximation for it) and he's very proud of himself when he signs to me and I jump up to either get him a new cup or refill the one he hands me. Even with the increase of communication he is still throwing tantrums regularly. I know a big part of that is the inability to fully communicate what he wants or needs to us and that's he's 2.

Some days I just want to join him in the tantrum. I've been feeling stressed between the amount of housework, taking care of Lex and going to work that I have to do everyday. I know that I'm not the only one here that can pick up the daily messes, wash dishes and take care of Lex but I am feeling like it's all my responsibility. I go on strike when it comes to housework but I tend to be the first one to give in. I can't handle the clutter and mess, I can't fall asleep with a very messy house.

Another part of my stress is our total state of being broke. No matter what I do we still have several bills that are late, items that we need that we can't afford and having to hope that we don't have a major emergency or that the car won't break down leaving us stranded.

I just don't know what to do anymore. I know that we'll get through this all somehow but right now things are pretty dim.

On a good note both my brothers are currently home. Matt is just visiting and he brought his girlfriend home to meet us all. Karl now lives a block from me and stops in frequently. He also brings his puppy, Chloe, by for us to puppy sit when he goes to hang out with his friends. It's just nice to have him nearby and Lex is eating up his time with Uncle Karl because they can rough house, watch cartoons or both wear hats and sunglasses and look like studs. They are too funny.

Weekend work

I can handle doing this type of work on the weekend. :)

Our trip

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

I've been reading this poem a lot lately. It's in more than one of the books I bought on ASD and in a few I've borrowed from the library. I kind of feel these days that it is really accurate for us. I freely admit that I never expected to have a child that would be attending speech and occupational services so often let alone a child with Autism. But I really wouldn't change anything about him. He may have major meltdowns (what 2 year old doesn't?), he may kick, bite, hit and pinch me regularly but he's still my Lex. He sings "rolly poly" and "icky sticky" with me all the time (not the actual words but he shows me the hand movements he learned at daycare), he loves to snuggle with me and we run around like a couple of crazy people in the evenings to help wear him out. I'm sure if you ask me in a few years I will have very few recollections about the tantrums (with the exceptions of the scars he has left me with) and many memories of all the sweet, fun things we do.

I'm rather enjoying our trip to Holland. Italy has nothing on this.

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!

Nerves

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.

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.

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

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.

Wishing

It's another dreary day here in Souptown but at least it's finally raining like we needed. Normally on dreary days I like to curl up and catch up on my friends' blogs and sometimes even comment (I really am horrible at commenting I can't think of things to say most times and when I can I often ramble... just like this). I've been using this dreary Saturday to catch up on the housework that was neglected while I was sick this week and to think about things I really wish I could do.

The first thing would be to become better at taking pictures. I really love to take pictures but I lack the talent or skill to take really wonderful pictures. I get lucky here or there but most of my pictures lack the special something that makes them pop. It's not that I don't have a wonderful subject because Lex is so dynamic when it comes to his expressions that no two pictures would ever be the same. I mean just look at this kid.



You can't get much cuter than Lex in the tub except when he's on his trampoline or in the park.



Another thing I wish for is more time with Lex. I get to spend the better part of my time with Lex but I do work around 32 hours a week and most weeks that seems like too much. He is very much a Mama's boy and when we are home together it is mostly just him and I, the way it has been most of his life. We were very lucky for the almost the first year of his life Nate and I worked opposite schedules so someone would almost always be home with Lex or he went to spend time with his Nana and Papa (or Grandma and Grandpa if they were in town). At 11 months old he was enrolled in his first daycare because Nate went back to school and I was working almost full time. We are still pretty lucky because he is in a daycare where I know the teachers care about him and the owner of the daycare knows who he is in spite of the large number of kids enrolled there, but I wish there was more opportunity for me to spend time with him.

I wish that rather than kindergarten in a few years we would be doing homeschooling. Don't get me wrong I loved being in public school but with his special needs I tend to feel that he needs more one on one time to grasp the same things other kids get quickly. He's very smart but terribly strong willed. I can tell him 3 dozen times that it is not alright to climb on the tv stand and remove him every time and try to redirect him (punishments do not typically work, he doesn't really grasp why he's being put in a corner and I do not believe in spanking him unless it's absolutely called for, ie endangering his limb or life) but he will keep doing it until he's bored of it. Who knows when we start working with the school district this fall for his speech and occupational therapy I may change my mind completely, it's been known to happen.

I wish I had the capability to teach his daycare teachers what works and what doesn't for him. They are really struggling with Lex because he is not the typical 2 year old but he has a lot of the same mentality of a terrible 2. Developmentally he is roughly 18 months old even if physically he is 2 1/2 years. The move back down to the 18 - 23 month classroom with be good for him and better for his teachers. Miss Dani and Miss Lisa are very familiar with Lex and he loves them immensely. Miss Lisa has been pulled in the past to coax him down for a nap so I'm sure he'll be much more comfortable when he gets back to that room.

There are only two more things that I wish for, one that's highly unlikely and one that will probably happen down the road. The first is to have at least one more child, this is the unlikely one. My PCOS seems more out of control than before I had Lex and it's just not financially feasible to spend the amount of money we spent conceiving Lex given all the speech and occupational therapy bills we have to pay. Not to mention my desire to go back to school to become an M.D. The second thing I wish for is a dishwasher... I know it's ridiculous but good grief I hate washing dishes and sippy cups are the worst. Our sink in our apartment makes doing dishes particularly awful given that it is very shallow and only has one bowl to it.