Confirmed Bachelor

Here is a conversation that occurred on Friday between Sassy and Bubba:

Sassy: "Bubba, why don't you like girls?"

Bubba: "Because they like romance."

Sassy: "Why don't you like romance?"

Bubba: "What...kissing? Love? Yuck!"

Sassy: "And you don't like kissing?"

Bubba: "No! It makes me think of girls!"

Hmmm...I'm getting the feeling that he has something against girls. I wonder if he knows that I pray God will find him a wife...

Autism Awareness

Today is World Autism Awareness Day and April is Autism Awareness Month. It was just a coincidence that last night I watched a movie called "Adam", about a woman who starts to fall for a man who has Asperger's. It came from Netflix and it's been sitting here for more than a week but I finally watched it last night.

Take my advice and watch this movie. It's just beautiful. Hugh Dancy plays Adam and he does a wonderful job. Rose Byrne is Beth, the woman who moves next door and finds herself drawn to him in spite of his quirks and oddities. It's a story of friendship, of love, of learning to adapt, of living in a world where you don't quite fit in. It's a great story.

Honestly, it didn't matter to me what the story line was, I had to watch it to see how well they portrayed Asperger's. I was very impressed. Hugh did a wonderful job of conveying the social awkwardness, the lack of empathy, the halting, stuttering way of talking and moving, the singular focus on one subject, the fear of change, the incapability of eye contact. He was just lovely as a man who is still a man despite not fitting in with those around him.

I have to be honest and tell you this movie made me cry. It does have some sad moments but I know the reason it made me cry was that I was seeing my son on screen. Not the son that I have now, and not the son who was first diagnosed, but my son just a few years ago. Bubba is not the typical Autistic child. While he may have regressed into a non-verbal, screaming machine with no eye contact and little regard for danger or people around him, he has made amazing strides to become a social, talkative boy who has--for the most part--learned to cope with transitions.


When Bubba was little, I never in my wildest dreams thought he would be where he is today. In my most secret dreams, the ones I didn't want to speak out loud for fear of jinxing them, I prayed that one day he would grow up to be as high functioning as Adam. I prayed that he would be able to hold a job, make a friend or two, maybe even be able to live on his own with some assistance. In all your dreams for your children, you just want them to live a happy, normal life. "Normal" takes on a whole different meaning when you are living with Autism.

Watching the movie last night, I cried. Okay, I sobbed until I thought my heart was going to break and I'm crying now. I cried because I recognized Adam. I cried because I recognize the frustration--of both Adam and the people who are trying to understand him. I cried because I know how painful it is for someone with Autism to be faced with change. I cried because I was familiar with his movements, his way of speaking, his bluntness, all the unspoken social nuances that went right over his head. I cried because he found a friend. I cried because he found someone to love him just as he was. I cried because he had to deal with a world that is harsh. I cried because he managed to make his way in that world, carving out a niche that suited him and his differences. I cried because I'm grateful that Bubba has progressed beyond what I ever dreamed possible. I cried because most Autistic children aren't like that. I cried because I have learned more from my son than he's learned from me. I cried because God has entrusted me with the care and upbringing of such a special soul.

Living with Autism is not an easy task. It drains the mothers. It's hard on the fathers. It wears on siblings. I have days where I have to convince my other children that they do love their brother no matter how difficult he makes life sometimes. There is nothing more heart wrenching than to hear your child say they wish they didn't have a brother. That's a knife to the heart with a wicked twist for good measure.

No one chooses this for their life, but it's my life. He's MY son. I love him 'til it hurts. I pray every single day that he will grow up to find someone who will love him just as much.

Who Loves You, Baby?

It's a universal truth among mothers that no one, no matter how much they come to care for your children, can ever love your children as much as you do. It's simply not possible. The times that my kids help prove that truth are some of my favorite moments.

Driving home tonight, Bubba was upset because he had to miss an episode of his favorite show. His trauma was short lived, however, as he told me he would just go home and watch it on his invisible television. I told him that was a great idea. He then spent the entire drive home having a very animated discussion with an imaginary friend (audience? admirer?). I only caught a word or two here and there but apparently he and his friend were having a good ol' time. He did share with me when we were almost home that he was going to invent a video game and he was going to post it on his destiny (trust me, I have no idea what that means either). He said in a very enthusiastic voice, "You've heard of 3-D? Well it's gonna be in 5-D! That's a mixture of 2-D and 3-D." I, of course, answered in the usual way, "Alright."

Where all this comes from, I have no idea. And what any of it means is even more of a mystery. Even so, I couldn't help but smile as I spent fifteen minutes listening to his excited conversation...with himself. I just love that kid.

Adventures in Autism: Peete vs. Peet

Adventures in Autism: Peete vs. Peet

World Autism Day

Today is World Autism Day. In honor of this day and of my Bubba who was diagnosed with High Functioning Autism at the age of 23 months, I wanted to share some stats about Autism. If your life has not been touched directly by Autism, you probably know someone who has. Please take a moment to read over this. Feel free to share it with anyone who may benefit.

Autism is a neurobiological disorder for which there is no known cause, prevention or cure.

1 in 150 people are diagnosed with Autism. It affects more people than pediatric cancer, diabetes and AIDS combined.

It occurs 4 times more often in boys than in girls.

Autism impairs the ability to communicate and relate to others.

It typically results in rigid routines and behaviors and can range from mild to quite severe (to the point of a person being "locked" inside themselves without the ability to communicate or even "notice" others).

Some children are this way from birth while others seem to have just "lost" skills and regressed (as was the case with Logan).

Parents are usually the first ones to detect anything is wrong while many pediatricians take a "let's wait and see" approach. As a result, many of us parents find ourselves having to educate our pediatricians in the latest research and therapies.

Early intervention is absolutely critical.

Intervention and therapy can include physical, occupational, and speech therapy; biomedical intervention; special diets; social training. All of these are expensive (speech therapy is around $200/hr) and most are not covered by insurance.

Every child has different symptoms and responds to different therapies. There is no one way or standard for treating this.

Raising a child with Autism is hard, very hard. It's a lifetime job. It's lonely, frustrating, maddening, sad, surprising, depressing, rewarding, draining.

Autistic children look "normal" and so if they act up in public, people assume that you just have a bratty child and should be disciplining better. Many are even quick to let you know what they think about your parenting.

Many couples with an Autistic child end up divorced.

Many pediatricians don't keep up with the latest information that comes up about Autism because it's all anecdotal. Meaning, there isn't concrete medical research to back it up. How can there be? Every child has different traits and responds to different things. There is no way to do any conclusive studies when that's the case. And the funding is definitely not there. And so moms of Autism are experts on the subject. We've read all the books, studied the research, tried every option. You have a question about Autism? Find a mom of Autism, not a doctor.

I feel especially lucky in that Bubba responded so well, so quickly to intervention but he will always have his "issues" and life wasn't always this easy. He lost speech around 13-14 months and didn't speak again until he was 4. CJ and I didn't go out together once in 3 years. For 3 or 4 years, I HATED going to church. It was just a battle of how long we could make it before Bubba was just too unmanageable and we would have to leave.

It's hard to call on even family and friends to help. If you're not even sure how to deal with your own child, how can you ask someone else to? Honestly, it's even hard to keep loving your own child when he's been biting you, screaming at you for hours, trying to claw your eyes out or even choking you, and all this during a time when you never hear him say mommy or daddy and definitely not I love you. Maybe he never will? How can you ask someone else to give him the same kind of unconditional love? It's not realistic. And so as moms, we are typically isolated and alone. No matter how many fits someone may have witnessed my son throw, they have never seen him at his worst. I'm not even sure if Dad (in my case at least since I'm the stay at home parent) has seen the depths that I have.

If it's possible to have a "typical" case of Autism, Bubba is not it. Most kids deal with more issues than he does. If you know Logan, he seems like a "normal" kid nowadays. This should not be your picture of Autism. Autism is not just having a quirky kid. If you know someone who has an Autistic child, just stop and give them a hug. It's nice to have physical contact that doesn't come from having to restrain or redirect a speeding freight train of energy and determination.

I know this is long, but if you read this, parents of Autistic children will thank you for taking the time to try to understand it better. God bless your day!

Lost and Found

All year long my children have been looking forward to a special event--the Lego Convention (yes, there really is such a thing). Howdy is fanatical about Legos and the other 2 just think they're fun but we all enjoy going. It's held in Seattle and people come from all over the country to show off their Lego sculptures. They have a Space Needle that is taller than me, an Eiffel Tower, a 10+ foot Titanic. It's fun to see what they can come up with.

Hubby had a friend's birthday party to go to but I headed out with the kids and their friend, G. It was very hot, very crowded and people kept pushing and shoving but we still had a great time. When it was almost time to go, we decided to head back to one of the tables so that G could buy one more figure. Bubba kept trying to read his new Lego magazine while we were walking and I had to keep steering him back on course since he wasn't paying attention. I let the kids know the plan--one more stop and then home--and we set off for the table not too far from where we were at.

We got there and I helped G elbow his way to the front. I then made sure my kids were stashed in a nearby corner so I could watch everyone at once. Only Bubba wasn't with us. I looked around but didn't see him. Knowing he had to be standing in front of some display that we passed, completely oblivious to the fact that we left him, I sent G back to grab him. But G couldn't find him. I parked G with the other 2 with explicit instructions "NOT TO MOVE FROM THAT SPOT!" while I went to hunt down Bubba. I was a little frustrated that I hadn't made sure he was walking with me where I could've kept an eye on him but I was not worried. I know this kid. I just knew I was going to find him drooling over some new Lego set on display. So I walked back the way we came, searching through the crowd for my son. I even started calling his name. I still wasn't worried, I just figured some adult was probably blocking him from my view. When he didn't answer I started to get a little more frustrated. So I stopped where I was and shouted, "I have a lost child!" That got everyone's attention. Heads whipped around and I gave a description of what he was wearing and what he looked like. (I never thought I would be able to recall what my child was wearing if I needed to give out a description like that so I was pretty proud of myself for knowing exactly what he had on.)

While I stood there waiting for my little brown-headed boy to pop out of the crowd, some nice gentleman asked me if I had told the security officers at the door. I told him no, that I hadn't told anyone before this moment. He said, "Why don't we go to security and let them know what's going on?"

I need to stop here for a moment. As I'm writing this, it seems like the most obvious thing that I should've done. But I was actually irritated with this man. I didn't have time to talk to security! I had to stay right there and wait for Bubba to appear. If I left that spot, how would he find me? And what if the other kids got worried? They wouldn't know where I was either. But I reasoned with myself that there were lots of adults looking around for him now and it was probably a good idea after all to let security know there was a lost child.

As I was walking toward the entrance with this man and his wife, something occurred to me. If something had happened to Bubba, I had just wasted all that time being so determined that he wasn't anywhere else. He could've been carried off while I stood there waiting for him to answer me already. (In reality, I had only been looking for him for about 5 minutes but it had felt like an hour.) That's when panic set in. I started sobbing. I couldn't see, I couldn't talk, I was hysterical. It hit me that my son was lost. I had no idea where he was or who he was with. I can't even think about it without crying.

The nice couple helped get me to the front door where I think I gave a description of him. I wasn't there long when someone said, "I think we found him." Then a lady who was working there came through the front door with Bubba. I started bawling all over again. I squeezed him up and alternated between kissing him all over and yelling at him to NEVER leave the building if he can't find me. Of course, my hysterics freaked him out and he started crying. But he was found, that's all that mattered.

Later, when we were leaving, Bubba pointed to the stairs that lead to street level and more buildings and told me that he had gone up there looking for me! Between the very busy street and Seattle Center he could've been hit by a car or snatched up and I never would've known it. I am so thankful to God that he was okay. The lady who found him had looked outside and heard him calling for me, that's how she even knew he was out there. Whoever she is, I'm so thankful for her as well.

Needless to say, I cried off and on about it the rest of the day. First, I had to tell my friends when I went to homegroup what had happened. Then Hubby came to homegroup later and I had to tell him. Yeah, I cried all night. I know I'm not the first person to lose child. To be honest, that's not even the first time I've lost Bubba. (I don't do it on purpose!) But all I could think of was "what kind of mother am I?" I guess all I can ask for is that it won't leave any permanent damage on his psyche. I really hate to give him anything else to unload at therapy!

Smashed Potatoes

One of the things that you typically encounter with sensory issues is eating problems. Certain foods have too strong a smell or don't look right or the texture is not tolerable. For whatever the particular issue, you have a whole new set of hoops to jump through just so that your child will thrive.

As I have readily admitted, I am quite possibly the world's pickiest adult. (Hubby's not too far behind me.) And as much as I have fun with the fact that everyone blames my children's eating habits on me and my example (often, I am even the first one to say it), I feel that I must take a moment to set the record straight. It's true that the list of foods I like is much shorter than the list of foods I don't like. However, that is because I've actually tried most of those other foods! I do try foods, I just don't like them. But I can't even get my kids to try anything new.

OK, so that's only partly true. I've never had a problem with Sassy (God bless her), and Howdy has really started to expand his menu and try new things. So that leaves (who else?) Bubba.
I told you that I'm making my kids eat whatever I've made for dinner or they don't eat. There are plenty of nights that Bubba just won't eat. And he's okay with that. But we're attempting to get him used to at least trying something. They say you may have to present a new food to a child a minimum of 10 times before they will eat it. For kids who have more severe problems, you actually have to start with them tolerating being in the same room as certain foods. Luckily it's not that bad here.

One of the things I have never been able to get Bubba to eat is mashed potatoes. I'm convinced it's just a texture thing. He also won't eat scrambled eggs, rice, pudding, Jell-O or applesauce. But I LOVE mashed potatoes so we have them alot. One night at dinner I did force him to eat one tiny bite. After much screaming and crying he finally took a small bite. He made horrible, gagging faces while it was in his mouth. Instead of being able to swallow it down quickly, he threw up all over his dinner plate. I gave up on mashed potatoes.

But it's come up again and this time I have the help of a professional. In Bubba's weekly "playgroup" (that's code for speech with another Autistic boy), the therapist has started working with the boys on getting past some of these food/texture issues. We are starting with...mashed potatoes. Or, as Bubba calls them, "smashed potatoes". So we went to playgroup and the boys got to make their own instant potatoes. Then what they do is go little by little to work up to taking a bite.

Here's how it goes. First, they have to touch the potatoes to their tongue. That's it. No tasting, eating or swallowing involved. For each time that they do it, they cross off a box on their chart. When they do it 4 times, they are rewarded with a small piece of chocolate. Then they have to lick it. Next, they actually have to leave a little piece of it on their tongues and swallow it. After that, they have to take a bite and swallow it. Bubba struggled with it a bit and made those faces again during his "bite", but he did it. It was very exciting to see him eat something that he's always had such a problem with. We are very proud of him.

Bubba is still not sold on smashed potatoes. We will have to keep working on this food, and eventually it will get replaced with another one. It's very tedious, frustrating and time-consuming. However, it's worth it if it makes eating and dinner time any better.

I want you to remember something when you're around any Autistic children. If you get frustrated at their behavior or wonder why no one's "worked with them" to stop a bad habit, they've probably been working on it for months, if not years. It is a very sloooow process. And for every behavior you seem to get control of, another new one will take it's place. It's so rewarding to see my son be able to turn around some of those "uncontrollable" behaviors. But there's never time to celebrate long before a new challenge demands that time, patience and microscopic baby steps.

Tell me again why I'm so tired all the time?

Long Overdue

How do you explain to your 8-yr old son that he has Autism? How do you explain to his siblings that you can't always treat their brother the same way, that things aren't always fair for them? This has been my recent dilemma.
My children all know that Bubba is different. I've explained to them several times that his brain works differently than other people's and that's why he does some of the things that he does, like throwing fits and not speaking well and wanting to only play by himself. They know he doesn't always understand everything the way that they do. I wanted to acknowledge that Bubba had some issues without giving him a label. I didn't want him to grow up being known as "that Autistic kid". But in trying to make life as "normal" as possible for Bubba, it seems that I've made it more difficult for everyone instead.
Let me start at the beginning. When Howdy, my "normal" one, was about 2 yrs old, we started noticing him doing funny things. He couldn't stand for cupboard doors or drawers to be open. His favorite thing to do with his cars was to line them all up like a train. He would leave them like that for days and we couldn't disturb them. He hated to get dirty. He refused to walk through the sunlight shining through the skylight at the mall. When you see your kid doing odd things, you can come up with 20 different reasons why but none of them is a disability or illness. It's not denial, it's just that it never occurs to you that there might be something wrong. The tipping point for me came when he threw a fit at the mall one day. We were walking into Target and the entryway tile didn't match the tile in the rest of the store. It was the same color but a different pattern. He threw himself down on the floor kicking and screaming and refused to walk any farther. I had to carry him out of the store while he was doing this and he didn't stop until we were completely out of sight of the store. Even then, I didn't think there was really anything wrong with him. I honestly thought he had just picked up on my perfectionism and neuroses. So we launched a campaign to make his life messy and disorganized. And it worked! No more weird issues.
Flash forward a little to Bubba at 1 1/2. Over a period of a couple of months we started noticing some odd things. He lost the words that he knew, he stopped making eye contact, he seemed to not hear us sometimes, he started screaming alot and throwing major temper tantrums, he was lagging behind other kids developmentally. After many tests and consultations, he was diagnosed with Autism just before his 2nd birthday. And so begins years of therapy, at home and with the doctors. Hours upon hours upon hours spent trying to help Logan learn to communicate, to sleep, to function. Hours spent dealing with tantrums, a run-away child, and sensory issues. And while we try not to let it rule our life, it is a central part of our everyday living.
In the middle of all this, we also had another child, Sassy. We've never sat our children down and said, "By the way, Bubba has something called Autism." We have, as I said, explained to them (including Bubba) whenever it seemed necessary that he is different from other kids. We explained it as his brain working differently than most people's. It didn't seem to be too big of an issue. Yes, they would get frustrated or mad at him sometimes, but they just seemed to accept Bubba's behavior as just who he is and that was that. Or so I thought.
Remember that Howdy had had some of his own issues? Well, when he was in Kindergarten, I started to realize he also had some sensory issues. If I hadn't gone through all that I had the last few years with Bubba, I never would have recognized it. All this time my focus had been on Bubba's obvious issues so I didn't notice that Howdy had some things going on as well. We had to make some adjustments for him at school and everything seemed just fine.
The truth, however, was that things weren't fine. Bubba's problems were so in-your-face-obvious that I had no choice but to notice and deal with them. Howdy's were more subtle and therefore didn't warrant any intervention. But something happened the other day that made me realize where I've fallen short and dropped the ball when it comes to Howdy.
While Hubby and I were at the fair, the kids were home with a babysitter. Apparently some things happened that caused my 2 boys to come to blows with each other. Actually what happened was that Howdy snapped and started beating up Bubba. All the while shouting, "That's it! I've had it! I can't take it anymore!" All of his frustration and anger with his brother finally boiled over and he lost control. Grown-ups intervened and separated them before anyone was seriously hurt physically, but all involved were crying and upset.
I wanted to cry when I found out. I felt like someone had hit me in the chest. And the first thought is, "What have I been doing wrong? Where did I fail Howdy? Obviously he was needing something that I didn't give him. What do I do now?" It's so easy to go back and see what I should have been doing, the signs I was missing. Hindsight really is 20/20.
I've always known there are support groups for kids who have siblings with disabilities but I figured Howdy dealt just fine with his brother so he didn't need that. And Howdy didn't have the obvious problems that Bubba did so I expected alot more from him. I sometimes found it sweet in a big brother kind of way that Howdy would try to placate Bubba and redirect him when he seemed on the verge of another fit. It never occured to me that maybe he felt that he had to be responsible and help us out. I was now left wondering if the only reason that Howdy was able to get along with Bubba most of the time was that he had his own class at school and therefore had hours most days that he didn't have to deal with his brother.
While I wasn't exactly sure what to do at this point, I knew that at the very least I needed to sit down and talk one-on-one with my kids and find out what was going on. I went to the library and found a great book that describes Autism to kids in language they would understand. I sat down first with Howdy and read it to him. I explained to him what Bubba had been like when he was younger and how far he had come. I tried to explain what life was like for someone who was dealing with Autism. I also told him about his own issues and apologized that I sometimes forget about them. He cried several times while we were talking. I hadn't realized how much he had kept bottled up inside. He never felt like he could say anything because he didn't want to get in trouble. He tearfully, timidly admitted to me that sometimes he wishes he didn't have Bubba for a brother. That broke my heart in so many ways. I shared with him that I've cried many times over Bubba and always wish he didn't have Autism. I also let him know that he can always tell me anything. If he's having a day that he wishes he could just drop-kick his brother into next week, then he is to come to me and tell me and he will never get into trouble for how he's feeling. The point is to talk about it and not let it blow up. We sat and talked for and hour and a half. It drained me emotionally and physically. There's nothing worse in the world than feeling like you've caused your child anguish. He's been burying all his feelings for years. Why did it never occur to me that he might have trouble dealing with this just as his dad and I had? But it's better now that he knows he can come to us and I know to be more sensitive to his needs. I'm also looking for someone professional that he can have access to to talk about any of this.
Sassy was so nonchalant about the whole thing. Her attitude was kind of, "OK, whatever, can I go play?" Of course, she is only 5 and she's always had her oldest brother protecting her.
Bubba was hysterical. When I read the book to him, he actually got really excited. He said, "I'm gonna be the top, #1 Autism!" He told me the Autism is why he's a good mind reader(!). Then he kept trying to finish all my sentences because he was "reading my mind." It actually got really annoying. I love his attitude. It's like he has superpowers or something. Now he wants to tell everyone about it. If anyone will listen long enough, he'll tell them that when he was 1 1/2 he "got the Autism". He's funny.
I don't know how other families deal with this. I'm really not in contact with other families with Autism so I haven't heard. But I just have to keep telling myself "better late than never." I can't go back and change anything but I pray that what I've done recently and what I do from now on will make a difference.

Living With Autism

It's already been an interesting morning. The kids started out this morning watching cartoons. The last show they watched ended with the bad guys getting away with some crystal while the good guys let them go. This was more than Bubba could handle. He's my Autistic one. He was so upset by this. He actually started to cry because now the bad guys were going to rule the world. Yes, he understands that it's just a show and not real. But this really went against what he thought was right and he was so traumatized. It took probably 20 minutes for me to find something that finally got him distracted enough to calm down. IT'S JUST A TV SHOW!!! But this is the sort of thing that goes on daily in our house.
Today was probably a little worse because we've had a lot of down time lately, lots of unscheduled free time and not enough scheduled activities. That makes meltdowns come on a lot easier and with more frequency.
Bubba wasn't born with Autism. He developed just fine, right at age level until around 15 months. I can't pinpoint a certain day or moment when things changed. It was a very subtle, gradual thing. It just slowly crept up on us. One day I started noticing that he didn't talk as much as he used to. He didn't have a lot of words at this point, but he could say "mama", "dada" and ask for more food at least.
We moved to TX in January of 2002. I had to leave him with a friend of mine one day and while I was gone he cried the whole time. When I went to pick him up, he reached out for me and said, "Mama, mama". I will never forget this. I remember being so excited because I couldn't remember the last time he had said that. Now, it wasn't like I had been worrying about why my son wasn't talking. It's just at that very moment I realized he hadn't been saying it.
The hard thing about seeing delays in your child is that your first thought is never that there might be a problem. You can always find a reason for everything. It's not denial and justification to avoid the truth. When you look at your child, your sweet, beautiful, perfect child, it just never occurs to you that there could be anything wrong. When he wasn't talking or pointing, we figured it was because we all jumped anytime he so much as grunted. He also had a big brother to do everything for him. When he couldn't figure out how to use a spoon, I chalked it up to him never being allowed to use one. When he would sit and line up cars for hours and just watch the wheels turn, I thought he had a great attention span. When he was behind all the other kids in bible class and didn't even try to imitate the teacher, we just assumed it was because he hadn't spent much time in bible class in WA before we moved. What finally tipped the scales for us was what we thought was a hearing problem.
You have to understand, my son is now almost 8. At the time, public knowledge about Autism hadn't exploded yet. The extent of most people's knowledge about Autism was limited to "Rain Man" and some movie with Bruce Willis. The Autistic people in these movies were either non-verbal or used "echolalia"-they just regurgitated alot of what they heard, especially from TV or movies. They were very anti-social, and not affectionate. This definitely did not fit Bubba. He loved to be held and snuggled and to give kisses. His motor skills were great; he loved to run and play and wrestle. At this point, Autism was not a word that was in my vocabulary.
Back to his supposed "hearing" problem. We never thought he was deaf. We knew he could understand some things. But you could yell right into in his ear and he wouldn't even flinch. Or you could whisper his name from across the room and he'd look at you. There was no rhyme or reason. We knew things were definitely going in but we weren't sure if anything was coming out. Luckily, just about every female in TX is a teacher and when I was speaking to a friend about Bubba, she mentioned that I could have him tested for free through the school district. So we set up a hearing test. Everything turned out to be fine. So the next step was to have a team of therapists come to our house to evaluate him. Before they left our house that afternoon they told me that even though no doctor would give an official diagnosis until Bubba was 3 (a practice that has thankfully changed), they believed him to be on the Autism spectrum.
I'm not sure I can put into words what all goes through your mind when you hear that. There was some disbelief. After all, my son didn't fit that profile that I had in my head. Relief because if you can identify what you're dealing with then maybe you can do something about it. What I didn't fully accept was sadness, or "mourning" as I call it (that came later). It was just acceptance and "now what?"
I didn't fully explain what all we were dealing with at this point. It wasn't just that he was speech delayed and we thought he was hearing impaired. I couldn't really take him anywhere or leave him with anyone. He would throw these screaming temper tantrums and he would spend an hour hitting his head on the ceramic tile in our entry way. You couldn't console him. He had no ability to communicate. He couldn't talk, he didn't point and he knew hardly any sign language. If he was wanting something, it was an absolute guess as to what it could be. At least with a new baby, you eventually learn their different cries and what they each mean. With Bubba, it was a constant scream.
Alot of Autistic children tend to be hypersensitive to things-noise, touch, textures, light. But Bubba was actually the opposite; he was hyposensitive. He needed lots of deep pressure hugs, didn't care if sand was in his eyes, mouth or diaper. He never seemed to feel pain. I remember walking to our car one day and when I put him in his carseat, his knee was all bloody. Apparently he had fallen on the sidewalk and never even fussed. There was no concept of danger. He didn't comprehend that he couldn't just walk off the end of the bed or a stool or the sidewalk.
He was also a runner. He would take off running and the only way to get him back was to chase him down. He would not come back to you if you called him. This would have been hard enough but I also had his brother who is only 20 months older. Baby locks and those doorknob covers never even slowed him down.
Somewhere along the line, he also stopped sleeping. His body didn't have a natural cycle that we take for granted. You know, it's getting late and your body starts to get tired and it tells you it's time to go to bed. He didn't have that. It would take hours of wrestling with him before he would finally fall asleep from exhaustion. And if something were to wake him up at say 3:00 in the morning, he was up for the rest of the day. And if he was up, Mommy had to be up.
There were so many days that I went to bed crying. Sometimes it seemed the only thing that kept me going would be one hug from Bubba or one of his gross, slobbery kisses.
Over the years, I've had many discussions with God about this. "Why Bubba? Why me? What were you thinking?!" I'm always amused by the comments from other people. I'm sure they mean it or are at least trying to comfort me. But someone always says, "God only gives a child like this to someone special." No offense to all you sincere people who have said this but it makes me want to laugh. There is nothing about me that makes me anymore capable of handling this than you. The only reason I'm able to deal with everything that Bubba can throw at me is that he is MY son. If he was yours, you'd find a way to deal with it, too. You wouldn't have a choice. You love your children. If Bubba was yours, you'd find a way to deal with the biting, kicking, screaming fits, sleepless nights, comments and stares from others, the frustration and feelings of helplessness, depression, guilt, sadness. You, too, would read everything you can find about Autism until you find yourself educating your pediatrician. You would give up social events for a few years until you knew that you could be gone for more than an hour without a babysitter calling you to come back home. Whatever it took, you would do it.
I don't believe that God chose me to be Bubba's mother because I was some great person who could handle all this gracefully or even better than others. However, I do believe that in dealing with his Autism, I am becoming a better person and a better mother. I have more patience than I would have ever thought possible. Every accomplishment is cause for celebration. I am alot more aware of the little things that go on because, for a long time, the little things were all I had. If I hadn't gone through all this with Bubba, I wouldn't have recognized similar sensory issues in his brother, Howdy.
When you speak to someone who is dealing with a disability or even some kind of tragedy what you hear so many times is, "It's not the way I planned it, but now I wouldn't have it any other way." It's true that it's not the way I would've planned it. But I have to tell you, in all honesty, I would have it another way. I know that God is accomplishing great things through us and our journey and our dealings with other people because of Bubba's Autism. But if I had a choice, even now when he's almost 8 and doing unbelievably well and better than our highest hopes, I would still choose not to deal with Autism. I've never heard anyone say that and I've only ever told my husband. I often wonder if there are other moms who feel the same way. I feel no guilt in saying it, it's the truth. Instead of being praised for "rising to this challenge" that God has given me or being thought of as someone "especially chosen" for this task, I would prefer to be the mother of a "typical" kid. But God has other plans for me and I believe He chooses better than I ever could. I often send up a prayer of bewilderment at His decisions but it is His decision nonetheless. I love my son and will spend my life making sure he grows up to be everything that God wants him to be.