autism

Happy Autism Awareness Month!

I can’t believe that it’s almost been four years since Casey was diagnosed. We’ve come so far. At this point it’s easier to look back and see that I was being prepared to have a son with special needs. There were several child development classes I wouldn’t have otherwise taken- but each time I couldn’t get into my first choice class and had to ‘settle’ with another child development or the like class. While I was taking those classes at Utah State, I also landed a great job working for the Early Intervention Research Institute. There, they worked on analyzing data from national programs and helped implement correct procedures that affected children with special needs. What I learned working there has been invaluable to me these last four years. Had I not worked there I don’t know if I would have known about all of the government funded programs for children with special needs as well how to understand research findings on best practices. I learned a lot about the law concerning developmental disabilities and the function of the schools and early intervention centers.

So flash forward just a year after working there. I have my second son not quite 13 months after having my first. Carter was so easy. He slept through the night and took two full naps a day. I thought the mother thing was easy. Then Casey came. They called it colic- but it was much worse. He screamed all day and night everyday. We didn’t know what was wrong. We took him to several pediatricians and specialists. Everyone said it was colic. I knew in my heart it was something else. In fact, I knew from the time that I got pregnant with Casey that there was something different about this child. I was afraid I’d lose him- the feeling was so strong. Anyways, the crying went on well past the 6 month mark that the doctors said it would get better. At that time, we moved out here to Washington. Lance had gotten a job here and I looked on a map and had a very strong feeling that we were to make Port Orchard our home. So we did. I took him to more doctors. They couldn’t find anything wrong. I hate to put it this way, but he was really hard. For the first three years of his life, he never went a day without crying or screaming for at least 3 to 4 hours. Lots of days it was much worse. At about 12 months he still couldn’t hold his own bottle and was nowhere near walking. He did start saying a few words like ‘ma’ ‘da’ ‘cat’ and ‘ball’. He’d imitate sounds and guestures and he loved to snuggle.

I need to put a disclaimer for the next part. I am in NO WAY saying you should not vaccinate your child. The government and private companies have done countless studies showing that there isn’t a link between autism and vaccinations. Children need to be vaccinated. In fact, in the country now we are seeing more and more cases of previously eradicated disease in children because they haven’t been immunized. Both Carter and Peyton have had all their immunizations.

Okay, back to my story. At fourteen months Casey had his MMR immunization. He got very ill after it and went back to screaming any time he was awake. It was terrible. After what seemed like the flu was over, Casey had lost many of the gains he had previously made. He stopped talking all together and stopped making eye contact. There was no more immitation and what’s worse- he wouldn’t let us hold or hug him without some sort of fight. Fortunately that was the first thing he got back on our road to getting him to a better place.

At the time, I knew something was wrong with Casey, but I didn’t put it together. I fasted and prayed to know what I could do to help him and then one night while I was reading my scriptures in my bed I HEARD the word “autism”. Like someone had said it. It all came back to me. All of the things that I had learned in those classes, the signs and the research I had read at my job. How could I have missed this? But at the same time, we were so blessed to have caught it when we did. The next day I looked up autism on the internet and saw that Casey had all of the symptoms. I didn’t want to believe it. That took some time to sink in. I remember watching Casey out in the yard with Lance playing and thinking that it just couldn’t be. Not Casey.

It’s crazy how things happen. At the time, I didn’t see what miracles were surrounding us. When we figured out what was going on with Casey- I was also pregnant with Peyton. His pregnancy was a shock to us. I remember crying at night asking Heavenly Father why he gave us this baby during such a hard time. About five months in to our pregnancy they told us that there might be a possiblity of Peyton having Down Syndrome. In the same way I knew that there was something amiss with Casey- I knew Peyton was going to be fine. Looking back though, had we not gotten pregnant with Peyton when we did, we might not have had another child and what a blessing he’s been to us. Especially to Casey. I digress.

After much prayer and at the dismay of many family members and friends, we started the proces of getting Casey diagnosed. I say dismay- many of our family members told us what we were doing was wrong. That we shouldn’t ‘lable’ our child. I’m sure they said what they did out of the goodness of their hearts- wanting nothing to be off with Casey, but it was hurtful and only made things harder. Not only was I still trying to come to grips with having a child with autism, I also felt like I had to fight to ‘prove’ that I wasn’t crazy and that there was really something going on. That’s when the Smith’s came in.

The Smith’s have a child with autism. One day she came into primary and sat down in the back. I don’t remember why she was there- she just was. I sat down next to her and asked if I could talk to her about Casey. I told her what my thoughts were and the things that were going on with Casey and she felt like he had many of the same symptoms as her son and told me that the most important thing I could do was get the diagnosis. Having a surefast diagnosis opened so many doors for Casey that would have otherwise remaind shut. For the months following that Tammy was my informant, my friend and my hope. She helped me so much. I realized then that they were the reason why we had felt so strongly to move to Port Orchard. We needed them.

Onwards. Casey started recieving services at 16 months. We didn’t get the official diagnosis until he was 18 months because there was a 3 month wait to see the developmental pediatricain. Up until that point, Casey was the youngest child diagnosed with autism at Hollyridge. This was huge. Childrens’ brains are still maliable when they’re young. They’re still developing and Casey was on the path to severe autism, but because he started getting intensive therapy so young, it changed the course. This is why I feel so strongly about early screenings for EVERY child for autism through their pediatrcians. Casey has come as far as he has because of the help he got through the early intervention services (on that note, I should say what an OUTRAGE it is that some states are cutting Early Intervention from their budgets).

Casey recieved his early intervetion services through an organization called Hollyridge out of Bremerton. They are miracle workers. Among so many other things, they taught him to walk (it took until he was 171/2 months!), helped him with his speech, taught him how to use a fork and spoon and how to drink from a cup. Those are milestones I totally took forgranted when my other children did them. With Casey, anything that comes natural to a child has to be taught to him. Everything. Hollyridge was AMAZING. He was a different kid when he left there at age 3.

At 16 months Casey started seeing a speech therapist twice a week. Her name is Gwen and she also has been another miracle in our life. She is why Casey speaks. Up until a couple weeks ago, Casey saw her once or twice a week. Then insurances cut funding for speech therapy and Gwen could not make enough money to stay in business. She, like almost every other speech therapist, was forced to shut down. With all the gains we are making as far as getting autsim research funded and raising awareness it’s hard for me to even concieve that providers would discontinue services for some of the most vulnerable children. I can’t even begin to say how great Gwen was to Casey. He genuinly loved her and she did him. How do you thank the person who made it possible for your child to talk? For the first time he called me Mom to the sentences he’s speaking now?

That takes us almst to the present. Since he was three, Casey’s been in an autism class at Manchester Elementary. The first year was horrid. The teacher was horrid. She would lock Casey in a room by himself for long amounts of time when he ‘misbehaved.’ I didn’t find that part out until the teacher left for maternity leave. She definatly was not someone who should be teaching children with special needs. The substitute was much better, but all the parents feard for when the regular teacher came back. That summer we lived in San Diego for Lance’s internship. I read several books on special needs law and was fully prepared to fight to get Casey moved to a more appropriate setting. A couple weeks before we returned home, I got a call from Cyndi Heaton-King. Casey’s new teacher. She’s FABULOUS! I didn’t have to fight. She’s trained through the UW autism center and runs the most amazing program. Since Casey’s been in her care, he’s made huge gains and is generally a happy kid. He’s even going to a regular preschool four days a week with a paraeducator. Next year he’s going to be going to a regular Kindergarten class with a para as well. When he was diagnosed, we didn’t know if he would ever talk. Now he won’t quit. He’s also brilliant. He memorizes almost everything he sees and hears. He can recite Cars beginning to end- and he hasn’t watched it that much. He recognizes numbers over 1oo and is picking up reading.

He still has his challenges and quirks, and finally I’m to a place where it’s okay. Where I don’t see the autism, I see the sweet boy who works so hard everyday. A boy who is enthusiastic about learning. A little boy who can’t lie. I love him so much. I’m so grateful that Heavenly Father sent him to us. That we were prepared by the Spirit beforehand and have been watched over these last few years. I’ve been granted patience I never knew I could have. I’ve been comforted and carried through this. I’m grateful for my husband. I could have never managed these last couple of years without him. He’s amazing. He’s the perfect dad to Casey. I’m also SO grateful for good friends who treat Casey the same as my other kids. Who get excited for us every time Casey reaches a milestone.

Now you know our story. Sorry it’s hellalong.

Please visit http://www.autismspeaks.org to learn the signs of autism. We’re not fundraising for them this year because of the fundraiser for the Lukiema and Lymphomia. If you’re in the mood to donate- please give to them.

4 thoughts on “Happy Autism Awareness Month!

  1. It took me three visits to read it all, but it was worth it. It is wonderful to look back and see how Heavenly Father prepares us for things when we have no idea at the time. I remember when I was pregnant before Mary that I felt so strongly that we should name the baby “Libby.” It was such a strong feeling, that I figured we were probably having another girl, because why would I feel so strongly about that name otherwise. We had never considered that name with any of our other girls. My grandmother had a sister named Libby, but she never met her because Libby died before my grama was born. When we lost that baby (boy), I realized that the Lord had made me think so much about that name to prepare me for the loss.It’s wonderful to see Casey doing so well.

  2. i love that picture of casey as a baby. and i love his hair shaved. i forgot it used to be like that. i remember how hard it was for you when he was a baby. now that i have a newborn, and i’m exhausted, i think of you often and how frustrated and trapped you must have felt. i’m sorry we didn’t do more to help you. i didn’t understand. i love you. and i’m so proud of both you and casey.

  3. Lexi, You are an amazing woman! I am so impressed – both with your inner strength and your ability to rely on Heavenly Father. Thank you for sharing your and Casey’s story. I hope that things only continue to improve for you and your family.

  4. Isn’t amazing how before the Lord allows a challenge, He prepares you. He knew that of all the parents in this world, YOU and LANCE were the ones who could best love Casey for the unique and special spirit he is. Be honored that our Father has so much trust in you as His daughter. Our world will never be the same because of a sweet little child of God. And I will be forever grateful. Happy Autism Awareness month sis. I love you.

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