London and Autism

Hello friends and family!

Gosh, I just don't keep up this blog like I used to. I hope everyone had a wonderful holiday season - we sure did!

I've been avoiding talking about London and his diagnosis for some time. It's not something that I feel comfortable uncovering to everyone. It's a deeply emotional subject which has really affected me and Nathan. But I feel the need to write this post, whether or not I end up publishing it to the blog.

When London was about 15 months old I started researching some things on the internet. I was curious as to why he was a little behind Lyla developmentally. Everyone just kept telling me that boys develop slower. He didn't have any words, and he still wasn't walking. The word "autism" kept showing up. It scared me to death. I would mentally push it out of mind and keep researching hoping that it was just something else that wasn't so "big". But my searches kept coming back to that same word. I finally filled out this form called an MCHAT online to find that London had a couple of the "red flags" as they call them for autism.

I brought up my concerns to our Pediatrician. He suggested London go to early intervention to help with his talking. He didn't feel London should be diagnosed as autistic or anything yet being that he was so young. So, a few months later London started walking. A few months after that, when he was close to 2 he still wasn't talking, so he started going to Alta Mira for early intervention.

When he got to Alta Mira, they did a lot of evaluations. We started to realize that it wasn't just the lack of talking that was an issue. He had some problems with fine motor skills, pointing and following points, and I found that he is what they call a "sensory seeker". Which is why he throws things a lot, holds pillows tight, chews on everything, and loves swinging and jumping. He doesn't have SPD (Sensory Processing Disorder), he just seeks sensory a bit more than most kids.

With all the evaluations happening, it was clear there was a bigger issue than the lack of words.

He made some nice improvements at Alta Mira. He learned how to do big piece puzzles, focused his attention for longer periods of time, followed instructions, and overall just really had fun there.

As he was nearing 3 years old, he was about to age out of the program at Alta Mira. They suggested that we get him further evaluated through APS (Albuquerque Public Schools) to continue early intervention.

We took him to an educational diagnostician through APS in May of 2012. They ran a series of tests, took our information, we filled out a lot of paperwork and then the diagnosis was given. London is affected by the autism spectrum disorder, or ASD.

The call came that next morning in May and I felt like a knife had been stabbed into my chest. I went into the bathroom, shut the door, and just cried. And cried. And cried. I felt like all my hopes and dreams for London were just thrown away. I had so much fear. Fear for his future and the struggles he will face. Fear of what will come of this. So many things ran through my mind. Including denial.

The thing about London is, he is very sociable. That's one thing that a lot of kids affected by autism lack. But London will look you in the eyes, laugh at your jokes, wants to play with you, and is just overall very interactive. He loves people. He loves to play with people. He loves to be cuddled, held, touched, squeezed, and tickled. He is also very, very smart. Not to say children with autism aren't smart - most grow up to be a genius of some sort. He knew all his numbers, shapes, colors, and letters long before Lyla did. He has songs and books memorized word to word, cover to cover. I'm pretty sure he knows more about the iPad and iPhone and how to work it than I do.

So it was hard for us to accept that what they were saying about him was the absolute truth.

But the more and more I looked at the signs, and how this "disorder" has affected him, the more we have had to come to grips with it.

He does have some of the more classic signs. He flaps his arms sometimes, and makes different finger movements in front of his face. And of course there's the no talking. That's not really directly related, it's more of a lack of self awareness problem. But that tends to go hand in hand with autism as well. He also never followed points (but he does now), and has always played with toys repetitively. Sometimes he has a hard time with transitioning from one thing to another. He's getting better with that too. And he was never interested in pretend/imaginative play or playing with other children.

He is happy though. Boy, is he happy. He has always been such a happy child and he just loves to smile and laugh. His happiness is contagious. He hardly ever throws a tantrum or gets mad about things. When he does, it's very short lived.

Nathan and I really struggled with whether or not to even tell our families. Our biggest fear was that people would start treating him differently. That they would think of him differently or pity him in some way. I wanted to keep their relationships with him the way they were. But the burden was too big to bear. My mom came over one afternoon and I just started bawling. I couldn't hold it in, and I realized that I needed their support. And London needed their support. Of course they haven't treated him any different and love him just the same.

I was also worried that this new diagnosis would label him forever. And once he entered the special education part of APS that he'll be stuck there forever. That this diagnosis would somehow define him. It doesn't. It's not who he is. He just happens to be on that huge spectrum. And thankfully it's on the mild end.

I've also struggled with a lot of guilt. I racked and racked my brain trying to think of anything I might have possibly done to make him this way. Did I not eat enough veggies when I was pregnant? Drink enough water? Exercise enough? Too much? Was it the vaccinations he had at his well child check ups? I have researched and gone over everything I can. And the thing is, there is no answer. No one knows what causes this. And Lyla. She is not affected at all. That makes me feel a bit better and maybe that it's not my fault. I've had trouble with letting that guilt go, but I can't beat myself up forever with something I have no control over.

So, we are doing everything we can to help London. We have taken classes. We have enrolled him in an autistic specific preschool which has a speech therapist and an occupational therapist that he works with every week. He goes 5 days a week for half the day. There are 9 kids in the class - all boys. We are very involved and meet with the teachers and therapists often. We bring home what they are teaching at school and do many of the same techniques. The teachers brag on London and always tell us how great he's doing. He's the youngest one in the class but they say they forget he is 3 because he can do all the same things the older kids do.

The good news is that he's doing great. He is growing by leaps and bounds. He does wonderful at the preschool and is meeting so many goals. He's still not talking clear words, only babbles and sounds, but he is trying. He is trying to say words. He wants to talk, he really does. But he does have his own ways of communicating. He does a lot of sign language. He uses a picture book called PECS. And of course there's the usual tugging us around to the different things he wants.

I have to say, I'm so thankful for our families. They love him just the same, and are willing to try the techniques we learn and are so patient with him. Not only are they great with him, but they are supportive to us as well. My mom watched Lyla for every single appointment I had to take London to (which was MANY). We just couldn't do all this without our families.

I feel blessed to be the ones that get to care and love London. He could have gone to anyone in this world, but God sent him to us. I feel chosen to protect him, and be his advocate, and his voice when he doesn't have one. I will always stand up for him, and always love him and no diagnosis would ever change that. And Lyla will be his protector as well, as she already is. She loves her "Lunnie Bear".

So, he's a little different. Isn't everyone? He will have a good life, we'll be sure of it. I try to remember all the blessings we have, and in all the ways he's NOT affected by this, and there are many.

It feels good to get this off my chest, even as emotional as I am about it all. Thanks for reading, and sorry it was so long. Love you all!!

Tara

** I wanted to add something... today's world is very quick to slap a label on children that seem to have some sort of "issue". With there being about 1 in 4 boys affected with autism, it could be easy to say there is an over diagnosis happening. I can't say I'm happy about him being labeled. In fact when people that aren't my close friends and family ask me questions about his preschool, I usually just address the fact that he is having trouble talking and I don't even use the word autism. Like I said, it doesn't define who he is. That's just the current path we are on and we will work continuously to either address it as "autism" or to address it as his own special needs. The most important thing for me is not how/if he is labeled, but how we can help him grow in the best way possible.