Wednesday, June 23, 2010

Express Yourself!

At one of our recent in-home therapies with Miller's cognitive therapist, we focused on validating Miller's emotional feelings, specifically, his anger and frustration issues. In the past, Miller would hit his head on the floor, or sliding glass door to release some of that frustration. He is now learning to vent that frustration through "squeezes", our own word for addressing those difficult situations. It is very common for people with autism to have sensory needs that differ from you and I. For example, a common sensory need is the need to crack ones' knuckles or neck. We view this as a nervous habit, but actually we are satisfying a little twitch that we most commonly feel on a subconscious level. These sensory needs are often stronger as well in children with autism. With Miller, he needs a very deep pressure on his head, chest or back. And when I say deep pressure, I mean a firm flat palm whap to his chest. He seeks out this feeling to ease that twitch or in most cases, frustration, but sometimes he comes close to hurting himself. Our new focus has been to help him learn to ease those feelings by reinforcing the positive behavior and rewarding him with a squeeze. I always feel kind of weird when we are out shopping or running errands because it looks like I'm hitting him, but he actually becomes more calm and focused when that little sensory need is met. Terry and I had to learn the early warning signs, ie. frustration, and learn get to him before he is able to complete that need in a negative fashion. He still needs a supplementary " sensory diet" to ease some of his feelings, but Terry and I are learning how to meet those certain needs with the help of our therapists. It is definitely a constant worry that we will miss something, but so far, things seem to be going well.
It has now been about 12 weeks since Miller started therapies, and about 6 weeks since he started going to "class". The progress he has made has been wonderful. However, sometimes I feel like he is taking one step forward and then three steps back. We have good weeks and bad weeks. This last week has been a very good week.
A big issue lately has been Miller's constant need to climb, crawl, pull and chew everything in our little baby proofed living room. And in there lies our problem. It's just BABY proofed, not "I'm Miller and I'm two and a half and I can lift and throw cinder blocks" proofed. Last week he pulled the TV out of the entertainment center. Terry has gone to great lengths to insure his safety, but it was just getting out of control. Almost everything has been bungee corded to the couch or wall. So, after a day that nearly caused a nervous break down, Terry started giving Miller warnings and time-outs. This hadn't worked before, not only because Miller didn't understand what he was doing wrong, but he didn't understand what Terry and I were trying to say to him. Now he receives a warning, usually "no" or "uhuh" and if he doesn't stop what he is getting into, he goes into his highchair without a snack and we ignore him for five to ten minutes. Sounds bad, I know, but the negative behavior has decreased and now when we mention the word "time-out" he stops doing what he was doing. A seemingly small triumph for Terry, but a huge step in how we work our days.
It has also been a great week because we are going to be participating in a research study being done by the University Of Washington's Autism Center! Our teacher approached us last week at class and asked if we would be interested. Of course! What an awesome experience for Miller. The study is focusing on how parents interact with their special needs children, specifically those with autism. Each of the 10 sessions will be taped and then more studies will be done based on those videos. We are so excited! Our first session is next week.


Tuesday, June 8, 2010

Baby Steps

We have the best pediatrician. It took a few tries to find him, but it was worth it.
Our first pediatrician was the most prestigious in the clinic. It took months to schedule an appointment with her, and she came highly recommended from other families we had talked to. She was dead set on helping me learn to breast feed. I think that was the most stressful thing about those first few appointments. Miller just couldn't do it. It wasn't programmed into his set of skills. I still gave him breast milk, but I pumped it every few hours and fed him by bottle. The second one was OK, but she was quick to put Miller on medications that he really might not have needed. (ON A SIDE NOTE: In case you all were wondering, yes, Miller has received all his vaccines to date without any side effects. We DO NOT believe the vaccines caused Miller's autism. This is just the way he is and we have come to accept that.) Then, by accident, when scheduling one of Miller's checkups, I mentioned the wrong name to the secretary (both the doctors had very similar last names.) Imagine my shock when this new doctor came into the waiting room instead of the one I thought I had scheduled with. It must have been fate because this new doctor seemed to already know the ins and outs of Miller. He also was the only one who told me it was my choice on how to feed my little baby. When I told him that breast feeding was very stressful, he pointed me in the right direction of some really great organic soy formulas that we used until Miller was able to consume cow's milk. He was also the one who told me he thought something might be wrong with Miller. After we talked a little bit about the characteristics of autism, I knew why he had asked me specific questions. I knew what he was looking for and why. He was quick to write me a very thorough referral and hand me some pamphlets about autism. He also called me to check up on how I was handling things a few weeks later. He commended Terry and I for being awesome parents and taking the news of Miller's autism so well. He wanted to stay in touch and said that he would be keeping tabs on Kindering. What a great guy.
When I left the clinic, I was feeling so numb. I didn't want to believe that Miller had autism. No parent wants to hear what I heard. I went to the car, buckled Miller in, and looked at the first pamphlet. At the top it read "Helping Children With Special Needs" and I cried. How could this happen? My one and only child has "special needs"? I was devastated.
The next few days were rough. I did my best to research autism on the internet, but every time I tried to read something, I would start crying. I still didn't want to believe it, but I knew deep down in the pit of my stomach it was true. It was time for me to get Miller the help he needed and deserved. Terry and I needed help too. We were parenting by the seats of our pants. It worked well for us. When an issue arose, we addressed it. So, now, not only were we learning to raise a two year old, we were going to have to learn to raise a two year old with autism. We needed guidance and support.
The referral our pediatrician gave us was for Kindering. A sort of "full service" center for children with special needs and their parents. They were to handle the evaluation of Miller's needs and then set us up with the right therapists and classes. After the initial shock of having a child with special needs wore off, I called them and hit the first of what was to be many, brick walls. There was a 6 month waiting list, just for an evaluation! I put Miller's name on the list and we waited. After 2 weeks, we got a call. They had a cancellation and wanted to know if we would like the appointment. So, a week later, Miller, Terry and I found ourselves at the building where we would soon come to find comfort, knowledge and most importantly, hope.
Miller's evaluation took about two hours. There were 4 different therapists scoring him in various categories. He was graded based on a scale of -5 to +5, with -5 being the lowest score and +5 being the highest. According to the state of Washington, the average two year old should score a 0 to +1.5. I'm not going to put all of Miller's scores here, but when averaged out, he scored -3.5. He was behind in his communication skills, social skills, and cognitive skills. This we knew already. But now, we had something to back it up, so Miller could start build the skills he needed to be a healthy, happy boy! Terry and I left the evaluation feeling happy for the first time in weeks. We no longer felt like we were doing this all on our own. Within 24 hours we had a social worker who had set up appointments for us to meet our therapists, and within 3 days, we had out first session.
The evaluation was needed to determine Miller's eligibility for services from Kindering. And also, to help get us the Washington state aid we needed to support his therapies and classes. I know a lot of people will give me guff for signing up with the state. Yes, they know who we are now. Yes, they know Miller has special needs. I'm OK with that. Did you know it costs about $15,000 for just one year of class? That's a 80 minute class, once a week. Now add in the 3 different therapists at $148 an hour, with one session for each therapist once a week...that's about $23,000 a year. So all together now that's $38,000, oh boy! Our insurance will cover only a small chunk of this, but with the state's aid and very generous private funding for Kindering, Miller can now receive the help he needs.

Tuesday, June 1, 2010

Our Story

I always knew I wanted to be a mom. I didn't know when it would happen, but I couldn't wait! Finally when my husband said that he was ready for a child, I was ecstatic, and only a month after we started trying, I was pregnant. It was July 3, 2007. My due date: March 1, 2008.
I was one of those pregnant gals that wanted to do everything right during my pregnancy. I also wanted to know every little thing that was going on. I followed my weekly development calendar and read all the books. Terry and I completed 3 different classes with Evergreen Hospital and attended a few day long seminars. We thought we were as ready as we could be.
I had a wonderful pregnancy. As my doctor put it, "I was just made to carry children." I only had morning sickness for one month and I never was actually sick. I never had any pain or aches. I loved being pregnant.
The months flew by and I kept working my full time job. I planned to work until I went into labor and that was what happened.
My parents planned a wonderful fancy "last dinner before baby" night out. My aunt and uncle were also coming to celebrate with us. We went out to eat at Canlis on Queen Anne hill. Canlis is one of those restaurants where you can easily drop $200 a person. Gasp! On the big night we were seated in the middle of the restaurant, all eyes on us. First course, wonderful! Second course, perfect. My mom had mentioned that she needed to excuse herself to visit the restroom and I said that I would join her. Just as I was standing up, my water broke! I was horrified! A huge mess all over the dinning room and everyone was looking at me! I sat back down (which was probably good because my heart was beating at 200 miles per hour!) My mom brought me my coat, which I tied around my huge waist and we were off to the hospital. The only problem with that whole thing? It was only February 4, 2008, almost a month before my due date.
I was able to stop at the apartment for a quick change and to get our things before I was rushed to the hospital. When we got there, I had to wait an hour before they had a room ready for me. They told me it was a really busy night! I got into my room and they started me on petosin to help the contractions increase. I waited there for the next 20 hours with only mild contractions. Finally when they had bumped me up to the highest dose, I finally started to feel something, unfortunately, after the water has broken, you have only 24 hours to deliver the baby. So, here I am at 20 hours and just getting started. So, I had to forgo my plans for a natural birth and get an epidural. Best decision of my life. Almost immediately after I received the epidural, things were getting underway and at 3:36pm on February 5, 2008, Miller Monroe Carlin Waldher was born. He was 18 & 3/4 inces long and weighed just 5 pounds. My beautiful baby boy. I got to hold him for only a few minutes before the nurses noticed that he was not breathing well. He was immediately rushed to the Neonatal Intensive Care Until (NICU). I was left all alone.
I was able to see him that evening, but I didn't know if I wanted to. I know that sounds horrible, but I wanted to remember my prefect little baby. When I saw him I cried. He was in and incubator and hooked up to a breathing machine that was giving him air. His lungs were not developed enough to work on their own. He had a feeding tube in his nose. I couldn't see him like that. It killed me. Not only was my little baby hooked up to all these things, but they didn't have enough rooms available, so we couldn't even stay with him. That night I left the hospital with no little baby in my arms, or in my tummy. I wasn't able to breast feed him because he was too weak to latch on, so for the next few days I was up every 2 hours to pump milk and bring it into the hospital.
Over the next week, we heard a hundred different diagnosis. Some said that he would be in the NICU for months, others said weeks. We just kept hoping that he would magically become strong and start eating and gaining weight. Finally after 6 days, we were able to get our own room and start learning how to take are of a preemie. After 3 sleepless nights and days spent at the NICU, on the 9th morning a nurse came in and asked us if we were ready to take him home. We thought they were joking, but they weren't.
We brought our little person home and for the next 3 months I don't think either Terry or myself slept more than 4 hours at a time. Miller had severe acid reflux and couldn't keep any food down. He was not gaining weight and had little skinny "chicken" legs and arms. Finally in the 5th month he started to grow. He would remain very small in height and weight until his first birthday in 2009.
The next 6 months were amazing! Having a little person around was both challenging and joyful, frustrating and rewarding. Terry and I both learned to relax and not sweat the little things.
Around 13 months Miller started walking. I couldn't wait till he started talking! We hit 15 months and passed our pediatric appointment with flying colors. At 17 months we started to notice little things about Miller that were different from other toddlers his age. He acted differently to things, was not very social with kids his age and picked up strange obsessions with weird objects. I was very fearful at his 18 month check up, but he passed all the tests perfectly. The following 6 months were a roller coaster. He started banging his head when he couldn't communicate what he wanted. He became even more obsessed with certain objects and still was not talking. Everyone I talked to seemed to know someone who had a boy that didn't talk until he was 3 or 4 years old. I worried the whole last month before his second birthday. I knew I had to make that 24 month check up, but I didn't want to because I knew deep down what my doctor would tell me.
The day of his appointment finally came and on March 9, 2010 I found out my perfect little boy had autism.

This is Miller's story. Our journey through classes and therapies. Doctors and diagnosis, and everything in between.
Comments are always welcome, as are questions and suggestions. This is a learning experience for all of us.