Small things that are a very BIG deal!!

I am SO grateful right now for the many ways society has begun to embrace children and families affected by Autism. There are many things I thought Nick may never be able to experience. For instance, I remember my own parents telling me about the first time they ever took me to a movie. It was a special and wonderful experience for them to see their child's eyes light up at this new adventure. At that time, I just knew that it would be a very long time (if ever) before I could ever experience the simple pleasure of taking my own child to the movies. It wasn't long before I heard that AMC theaters was trying out "Sensory friendly showings" in their theater nearby. I did some research, talked to some other parents and learned more. Apparently, there was some "big-wig" at AMC who had a grandchild with Autism. They decided to hold a sensory friendly showing of current family type movies once a month and see how it went. One Saturday a month, at 10:00 a.m. there is a showing of a brand new movie for families affected by Autism. The sound is turned down a little quieter and the lights are brought up a little lighter and families are allowed to bring in special snacks for kids on special diets!! The best news of all? The whole "silence is golden" rule does not apply during these showings! We have been to a couple showings since I first heard about them and just this past weekend, we saw "How to train a Dragon" at the sensory showing. I brought GFCF popcorn, juice and candy and Nick, Max, Grandma and I met at the movie theater. The lights went down and the movie started immediately....NO previews to sit through!! Nick immediately covered his ears, but soon realized that he could watch the movie without the sound hurting his ears. I watched both Nick and Max become entranced by the movie and I felt my heart grow warm with gratitude that they were able to have this experience. When Nick randomly let out several loud yells no one in the theater turned to stare or shushed him or even acted as if they noticed. Many other kiddos yelled or made funny noises during the showing as well. One kid ran up to the front of the theater and made shadow puppets against the screen. When Nick got bored, he climbed out of the aisle and walked up and down the stairs or moved to another row. At one point, Max tried to walk down the aisle and climb into a little girls lap. I grabbed him and apologized and that little girl, who couldn't have been more than 10 years old, said, "It's o.k., my brother has Autism too." It almost moved me to tears just to see and hear how accepting everyone was of each other. It was truly a wonderful experience and I certainly hope that other companies will take a cue from AMC. They have definitely made loyal customers out of our family!!

We have also recently had a very nice experience at the T-Rex restaurant in Kansas City. For anyone who doesn't know, this is a dinosaur themed restaurant that has enormous robotic dinosaurs that actually move and growl. I have wanted to take Nick to this place for quite awhile, but wasn't sure how he would react. Allen and I finally decided to brave it and take both boys there for dinner. I didn't have any idea whether they had any GFCF menu items, but I hoped we would figure something out. When we got to the restaurant, I inquired about a kid's meal for a special diet. The head chef came out to talk to us and gave us several options. There were some items that were GFCF on the kids menu or he would be willing to make any GFCF meal from the adult menu into a kid-sized portion! The best news of all was that he could make GFCF french fries! Thank god for small miracles, because Nick had been begging for french fries with every Burger King we passed on the 30 minute drive to the restaurant! We were seated immediately and Nick popped right back up and explored the restaurant. He circled the entire restaurant about 3-4 times and pointed out all the dinosaurs and fish. He was a little nervous about the growling (it was pretty loud), but he handled it well. He did manage to escape from daddy at one point. He was located on top of the Woolly Mammoth display approximately 20 feet above the dining room floor. Sigh...

After we finished dinner, we took the boys into the little shop they have attached to the restaurant. They have a "Build a Dino" made by the same people that do "Build A Bear." Nick and Max each got to pick out a dinosaur to stuff, bathe and print out a birth certificate for. Then we let Nick pick out a dinosaur t-shirt and looked around the store some more. Nick found some dinosaur figurines that he fell in love with and threw about 10 of them into the stroller. He shopped just as fast as I removed those darn things from the stroller. Then, as I leaned over to say something to him, my purse gaped open and he threw two figurines into my purse! Whew....glad I saw that, because it would've been hard to explain at work. So, about $65 later, we finally exited the store and did some shopping at the surrounding mall. We had a few minor snafus....one in which Daddy turned his back on Nick and then turned back around to find him running through a water fountain with no shoes or socks on. He told me about it after I came out of the store I was in and after I stopped laughing, all I could say was, "I can't believe he knew to take off his shoes and socks first!!!" Ahhh......I will say that Autism teaches me to enjoy and celebrate all the minor and yet enormous progress that Nick makes in everyday life.

Tough Questions...

It has been awhile since I updated and that’s probably because I have been meaning to (and avoiding) writing this entry. I’m not really sure how to write this, so I guess I should just dive right in. Allen and I have always wanted at least two children. Once we began suspecting Autism with Nick, we took a step back and reconsidered our options. We were worried that a second child would take time away from Nick and stall his progress in therapy. Mostly we were terrified that another boy might mean another child with Autism. We knew the odds of another boy were very high for us because there have been no women born on Allen’s fathers side of the family in over 90 years! We weighed the risks and decided that we wanted another child no matter what. If we had another child with Autism, we would be in love just the same. Also, research shows that siblings are generally a good thing for kids with Autism. So, by the time Nick was officially diagnosed at just over two years old, I was several months pregnant with Max.

Now, the whole time I was pregnant, people asked if I had concerns that I might have another child with Autism…..YES! People asked even more so after we found out we were having another boy. Once Max was born, I started getting the question more often. “Do you notice any signs? Do you have any concerns?” I tried really hard not to scrutinize everything Max did and not to compare him to other kids his age. Once he got a little older, we noticed that he had great eye contact and he smiled or giggled appropriately. (Both things that Nick didn’t do as a baby) We thought we were safe and breathed collective sighs of relief.

Although I assured everyone who asked that Max probably did not have Autism, the truth is…..I was worried. Yes, he made eye contact, smiled, met his milestones and played appropriately with toys. BUT….he rarely ever babbled and at 17 months old, he had maybe one spoken word. I tried sign language with him and finally got him to sign “more.” He refused to do any other signs or repeat any words I asked him to say. I tried to stay calm and give him some more time. One day, Allen asked me, “Isn’t this around the age we first had Nick evaluated.” I sadly told him that Nick was EXACTLY 17 months old when we called ITS to come evaluate him. We made a joint decision to again call Infant and Toddler Services for an evaluation. Several weeks later, a team showed up to determine if Max met criteria for any type of therapy. It was determined that he was at least 25% delayed with his speech, but that he would probably only need a few sessions of speech therapy to get him caught up. The general consensus was that we should not worry about Autism (Yeah….where have I heard that before?) and that Max probably didn’t talk on schedule due to his older brother’s speech delays.

We started our allotted four sessions of Speech Therapy with one of Nick’s former therapists. Now, approximately 4-5 months later, we are still receiving therapy through ITS. Max is refusing to use his sign language AT ALL. He does say a few words, “mama, dada and NO” but not much else. When you ask him to repeat a word, Max generally says the same thing every time, “Da.” It’s too early to say whether he is just a late talker, has some type of speech impediment or even has Autism. Recently, Max started doing a fair amount of “tip toe walking” which made my heart sink. Walking on tip toes is a very, very common sensory issue in kids with Autism. We discussed it with his Speech Therapist and they are having an Occupational Therapist come out for an evaluation, “Just to put our minds at ease.” Allen and I have toyed with the idea of making an appointment with the developmental pediatrician, but we are holding off on that for now.

I know that Max is extremely stubborn and I have the distinct feeling that he is pulling a huge trick on his Mommy and Daddy, but I’m still scared. I’m grateful that he has started babbling long strings of nonsense, but shocked at the very few number of words he actually says. It doesn’t help that I know a ton of people with boys his age and I can’t help but compare them. Max is well behind other kids his age as far as his speech goes. I can only hope and pray that he is just a late talker, but the truth is that life would be very difficult with two special needs kiddos. I just continue to think positive, take deep breaths and remind myself that I love Max no matter what and that I will do everything in my power to be his biggest advocate if and when he ever needs me.