Bah Hum Bug

She Says:

The school called today in a panic. Dylan had been happy all day. Then, suddenly had a fever with a temperature of 102 degrees. They rushed him to the nurse and gave him Tylenol.

I have so many emotions... does this mean our treatments are working? He has such a strong resistance to getting fevers, does this mean his immune system is fighting off the virus successfully? Could I be such a twisted mom as to be happy he has a fever?

Or does it mean his body isn't responding and things will just be the same after all the vitamins and treatments we've stuffed down the poor kid?

For now, we'll just have to wait and see.

But, I can't help but wonder, will he be better for Christmas? Will he enjoy it? Can I enjoy it? Why can't December be time off from autism???

"I'm Sick... "

Today is Day 2 of Dylan on Valtrex and day who-knows-what of cutting out sugar, adding a zillion vitamins in his system, etc. It's going to be a rough road. Many autism moms have told me this is really hard on their bodies to kill off the viruses and toxins.

At school, he told the teacher "I'm sick."

But, he had no fever or outside reason to send him home.

That breaks my heart. I wish I could be doing all this treatment at home and keep him in a bubble. It'd be easier if life could just stop and we could focus on treatment. But, he has school and therapies and lots of other things going on.

I'm finding it harder to not monitor him though. Tonight, I went to a mom's ornament exchange night in my neighborhood. When I got home, I learned Dylan was refusing his treatments and only swallowed half. He usually has to take 3-5 things each morning and night. I hate hearing he only got half. But, I know the poor kid is sick of it. Was it even worth going out? I so badly want results and in some ways it's all I want to think about.

Fa, La, La..

When Dylan arrived unhappy at school yesterday, his teacher asked him what was wrong. He replied, "I miss my mommy!"

That is pure joy to me! In fact, my best Christmas gift... Fa, La, La!

The fact that he can express his emotions and knows what he wants to say is not something I would have dreamed of two years ago.

Plus, I don't mind being missed.

In fact, I miss Dylan too. So often I'm racing to "fix" him from the world of autism that I rarely get to be in the moment with him. I started this morning chasing him down to start a new pill, Valtrex. He didn't like the taste. We battled it out and both of us won... I got him to swallow it and he got a treat to reward himself. Then, looking at the clock, I realized how late we were running to school. I raced around to beg him to wear clothes and especially a warm jacket. That is often how our mornings go. The few seconds I get to enjoy him are when he crawls into bed with us and snuggles up. (Oddly enough, he is our snuggly child while our daughter wants only chocolate milk and TV... nothing to do with hugs from her parents!)

After school, we usually get a few moments together with a snack. Then, Dylan begins speech therapy, occupational therapy, playing at the park with typical kids, or working with his sports teacher. After any one of those activities, I have to race around the house begging him to take a half a dozen more vitamins. Then, the bedtime routine and a few more moments to snuggle with him and that's it.

All in all, we see each other for such a short period of time when I'm not begging him to do things... swallow something, brush his teeth, answer his sister or mom, etc.

So, yes, Dylan, I miss you too! Love, mom

What If?

She Says:

We've started down the never-ending road of biomedical treatment for Dylan. We cram vitamins down him twice a day and give him shots two times a week. We've taken sugar away too, as much as we can.

What do we hope for at the end of these treatments? I'm not sure. Do I have faith to hope for full recovery? Not yet. Do I hope for more time interacting with him? Sure! Do I hope for him to have a better quality of life? Sure! But, what is better for him or me? Too many unanswered questions. Right now, just putting one step in front of the other.

What I do know is we got some amazing lab results that answered many pieces to our puzzle of autism. We know some deficiencies for sure and those we will attack with all our might. After I read the results with the doctor, I had this warm feeling come over me that Dylan would have a better life than we now know. It was one of my highest points in this journey.

I do see progress in his speech, there is so much more that is spontaneous out of him now. On Saturday, he was in the shopping cart at Target and said "I miss my daddy." WOW, that's huge to me... not only was he saying a full, complete sentence, but he was expressing his emotion. I loved it. I wanted to yank him out of the cart and throw him around in happiness. But, I've created enough scenes in stores along this autism journey. I thought I'd spare the other shoppers for once.

My husband miraculously got Dylan to swallow pills. This came after I was pouring them into his juice and milk each day for a week. He looked at me one day and said, "Mom, no more sand in my milk!" So, Eric handed him the pill and said, then swallow. He showed greater faith in him than I saw. I often don't believe my son can take the next step in life, but someone else believes for me. Now, when I tell him it's time to take his vitamins, he says "pills please!" No Joke!

He Says:

What if we really do cure Dylan of autism? Will we even know who he is? Will we miss the autistic traits? Will we want to make the funny sounds we've grown to love and he will no longer need them? Will I be able to open the door after work and yell "Dig a Dig a Dee" and he'll be too typical to not yell it back?

Funny Things He Says

She Says:

Dylan has such a great sense of humor. I think God blessed him with it to get through this whole maze.

1. He has an aide at school that is African American. Today, she asked him for a kiss. And he said, I give you "chocolate kisses!" They are like Ebony/Ivory!

2. Last night, Aunt Nicole stopped by and was laughing about something. He told her "Nicole is too happy!"

3. When his dad gives him B12 shots, he says, "Good job playing doctor!"

4. He also has an African American sports coach who has big red lips. He often asks the coach if he is wearing lip gloss or asks to touch his head. (To the embarrassment of mom!)

5. Lately when his aides at school ask him to start a project or go to another center, he tells them "I'll do it later. Dylan likes to do it later!"

What a nut!

Holiday

Thankful for Autism?

She Says:

We just survived another holiday -- it's always with mixed joy that I take a break from Dylan's therapies and allow myself to enjoy him and the season. I say mixed because in some ways I hate to break his routine and the momentum we are making. I know it's always a struggle for him to get back on track and continue the progress. But, I also really enjoy the time being around him more. This Thanksgiving break, he had a week off. I loved hearing him talk more and his voice is getting louder.

First, we had Grandpa Staples' first visit to Dallas. Dylan had just barely gotten out of school for the Thanksgiving week and seemed to want to take a break from talking. He didn't say too much to Grandpa, but was very happy to have him around. It broke my heart because Dylan thought he was getting on the plane to go back with Grandpa to Utah. He loves it there. I really believe he feels very loved there, but also very happy to be away from all his therapies.

Next, came Grandpa Lewis. Dylan talked the most with his wife Vicki. He loved that she'd play computer with him and get into his toys. Dylan would go off on his own, but Vicki would follow. And Dylan really enjoyed that. He wasn't too thrilled about the Thanksgiving meal. He's still such a picky eater and I gave him a rest from working on new foods. (Or should I say, I gave mom a rest?) So, to be honest, he ate Chex Mex and noodles. UGH!

Then, we headed to San Antonio to see Grandma/Grandpa Pascoe. Dylan was soo excited to be driving to their house. The highlight of the trip was that he got to sleep in their walk-in closet on an air mattress. This is what he most talks about. I don't know what it was, but by this point in the week, Dylan decided he liked talking again. He talked a lot, and loudly, to Grandma. This made me happy. Mom said she could see a huge spike in his language since October. Yay! I don't know if it's the vitamins we are stuffing down him or his own desire, but it made my Thanksgiving more thankful!

Grandma took us to the Science Museum. Dylan was acting horribly there. He was running around, escaping and screaming often. I couldn't figure out why he was acting so erratically. We were in a dinosaur exhibit and the model animals were roaring loudly enough to vibrate the room. After getting mad at him a few times, I held him on my lap and tried to calm him. He finally said, "IT HURTS!" My heart broke, I realized I was forcing him to enjoy something that was upsetting his whole body. The auditory system in him causes him to lose control of himself. In some ways, I was thrilled he had the ability to tell me what was bothering him. In other ways, I felt badly that he couldn't enjoy things like other kids.

On the way to San Antonio, Eric was drilling me on what happened at the Alamo. I really still have no clue, except that they all died. Well, we went to visit the Alamo... with an autistic child in tow. So, I still have no idea what happened at the Alamo. We walked in and the echo inside must have been too much. A tour guide was talking to a large group of people when Dylan let out one of his hurtling screams. Every single person, including the speaker, stopped and turned to look at us. I was out of there. Eric and the family soaked in history and I paced the irrigation canal with Dylan watching the fish go in and out of their tunnels. Grandma tried to rescue me, but by that point I was resigned to watching fish and that nothing could be as interesting as watching my child could see in the water. Why does he love water so much?

Dylan is a bit obsessive right now about having sunny days. He is not at all enthused about the holidays or Christmas as he knows that means colder weather. His main concern, I believe, is whether or not he can go swimming. If Eric and I end up living in the Bahamas, it's because we got sick of hearing his nagging about warm, sunny days. Dylan lately will scream or have a tantrum if he wakes up to a rainy day. I've never wished so hard I had a direct line to God about the weather. So, tonight, we were asking Dylan what he wanted from Santa and he said "a pool." Boy, we may have to find a new Santa! One who controls the weather too!

He Says:

Dylan has a hard time with change. For example, tonight he had to have the fan on in his playroom, before he would go to bed. Holidays must be difficult for the little guy, because of all the change.

On the other side, his family was amazed at his reading ability. Just by being around his family, he learned. For months we have been trying to get him to "pump" his swing. His Grandfather figured out how to teach him in a visit.

After four years of having Tinker Toys, he has finally learned how to play Tinker Toys. Now instead of stacking wheels up, he actually builds. Thanks to one trip to his Grandmothers.

He even hugged my stepmom.

I might not be able to teach him any games, or how to treat people socially, but these parents with all of their experience were able to teach him.

Dylan is able to type. Here is what he wrote:

home numb
dogjayapplesacorncstawberryssbroccolibbananalemon (category: fruits)

She Says:

I can't let him have the last word!

He makes a great point: everything in Dylan's life has to be shown to him. Very little is intuitive. It's so beautiful for us to see our parents show him things.

One more thing to be thankful for!

Windows of Hope

She Says:

There are moments in raising a child with autism that you see a glimpse of normalcy, that you feel a part of the "other" parents and that you enjoy a typical child moment.

Last Friday was one of those for me.

My son had a Kindergarten Fairy Tale Ball. I was dreading it. Even a typical boy doesn't find dressing up as a Prince very enjoyable. It's not really their dream like a girl dreams of being a Princess. I had chased him around the house a few times begging him to try his Prince cape or crown on to no avail.

Earlier in the week, his teacher had called to say "How badly do you want Dylan to participate in the Ball? He's not too interested in the practices." It's one of those constant dilemmas you face in raising an autistic child: do you force them to fit in or allow them a break? I of course opted for the first choice and replied "If he's acting up in practice, then he shouldn't be allowed out of it."

Thank goodness I was right. I could have been dreadfully wrong. Often I am.

On Friday, Dylan walked into the Fairy Tale Ball in full costume. He was all smiles to see his mom and sister at school and put on an amazing performance. He sang with the other Kindergartners and danced with them. He gave hugs to fellow classmates and even held hands with the girl dressed up as Scarlett O'Hara.

Scarlett O'Hara's (aka Noelle)'s mom e-mailed me a thank you... she thanked Dylan for being such a good friend to Noelle. I never dreamed my son would get a compliment like that. I felt like jumping up and down too. Noelle and her mom made us all feel normal... for a moment.

The Highs

Every now and again, in the race to "fix" your child with autism, you get a breath of fresh air. Your child does something you've worked on for years all on their own. They initiate a conversation. Or answer your question without prompting. Or they just plain mix in with typical kids. A typical weekend, I guess that's what we had.

Dylan's Kindergarten had a Fairy Tale Ball this week instead of kids dressing up for Halloween. On Monday, I get a call from his teachers complaining "Dylan really doesn't participate in the song practices on stage, he runs in circles during the

Friday night our church had a Trunk or Treat. At first, I thought, a huge crowd of people mixed with an autism child equals royal nightmare. But, like anything, I pressed on to the activity. We pulled

Church

He said:

Church and autism; hot oil and cold water.

Try to convince an autistic child to put on Old Navy underwear instead of the favorite Blue Fruit of the Looms. Try to put the rest of their clothes on. Feed them, and try stuff vitamins in them.

Then tell him that he is getting ready for Church.

Watch the clothes come off, the breakfast get thrown, and your eardrums fall out and die ten feet from you.

If there was ever a time to put a camel through the eye of the needle, it is 45 minutes before church.

Saturday Chaos and Rule Breakers

She says:

Saturdays can be so confusing for an autism child. Each one is different and no two are alike. Parents are usually rushing to do chores or play and don't want to be on a schedule or a routine. This particular Saturday, I insisted we go as a family to a pumpkin patch.

This is where the rule breaking part comes in.

My son with autism had shown no enthusiasm at the pumpkin patch. He wasn't responding to us in any way. He seemed like he'd rather take a nap than look at animals or pumpkins. We'd ask him to smile for photos and it all seemed like a huge effort on his part. Nothing was sparking his interest. He was unresponsive in every way today.

That is, nothing, until he spilled his water bottle on a goat and the animal jerked away and stuck his neck back out. Dylan continued to pour water on the goats and they'd jerk away and he'd crack up laughing. My sister asked, are you sure this is behavior you want to encourage? I wasn't sure, but it was the first time that he had responded to anything all day. So, I had to continue watching. A few other boys near the goats started to laugh with him. Soon, all three boys shared water bottles and threw squirts at the goats. It was our first sign all day of human involvement and we were thrilled.

Another mom was not so thrilled, she stormed over and yelled at my son, "that makes me very sad when you hurt the goats!" I wanted to yell back, do you not see how alive my son? He has a glow in his eyes and is laughing with other kids! But, I knew she wouldn't get it.

You see, autism moms, are a rare breed. We celebrate when they lie -- that means they understand language in a complex way. We cheer when they fight with other kids or siblings -- that means they are interacting and sticking with the kids. We let them jump all over the couches and beds -- it's a cheap form of OT therapy and usually keeps them involved with other kids. We'll do anything to keep their attention, bring them out of the cloud or fuzz they live under. We have a strange set of rules to live by.

Tolerance in Texas

Today we tried to squeeze every moment in with the kids.

Waking up at 5:30, we ran those kids until bedtime. It was a basic Saturday: shopping, move more stuff to my sister in law's apartment, and go to see farm animals. We do this nearly every Saturday. It more or less makes my son look normal during the week.

In addition to working with an autistic son, I made the mistake of buying a home with a lawn. This means that any free time must be spent away from my family, work, and the blog, at Home Depot.

So, my son and I went to Home Depot. The part my autistic son cannot take is being in line--any line. He gets so anxious he shakes, screams in an ear piercing high pitched voice, and goes limp on the floor. And a line is the only way to get out of Home Depot.

Standing next to me, was a woman who looked tolerant. Her hair was cut short. It was colored white, yellow, and what once must have been puce. I think there were some dark roots, but I really can't be sure. Her shirt color kind-of sucked all the light from her pale-snow like skin, but somehow made her florescent yellow skirt and high heeled black boots stand out.

To me, this look screams tolerance. In nature, when an animal has these colors, it means "avoid".

Before introducing herself, she told me how her kids were almost worse than mine. I let her know that my son is autistic, that he hates lines, and I thanked her for not minding the outburst. Then comes the line that I have heard so many times.

"You know what I think it is..." she began.

And before I could say "No thanks, I can do with out that knowledge." I get to hear this line, once again.

"It is in the mercury in the immunization shots." We all have lines that we hate. That one is mine.

I don't know why my son is autistic. I don't care if it is mercury, or the inability of his immune system to fight off allergies. The likely cause: that is the way he is. That is the way A LOT of kids are these days. I love him and my daughter--who is not autistic--exactly the same.

If there is a miracle cure, I'll take it. I will take anything that won't harm my child. The last place I expect to find an answer to why my child is autistic is in a shopping line.

Still, I appreciated her ability to not give me that "why can't you control your kid" look.

Sunday, Bloody Sunday

Mom Says:
Moms and dads see parenting so different with a typical child. Take an autism child and expect two parents to agree and you get a divorce rate of at least 50 percent. Our marriage is still intact. But, each day we experience our autistic child in two separate worlds -- male and female. This blog seeks to show the "he said, she said" of raising an autism child. We don't seek to show a perfect example, but a real one -- ours.

If there's one lesson we've learned -- and never graduate from -- it is to not blame each other. Blame autism, blame the environment, but don't blame each other. Yet, it's so tempting.

Tonight, our family was peacefully reading bedtime stories... both parents were there, a rare thing in itself, and two kids were listening. Our oldest child with autism was sharing a book with his younger sister and it was a rare moment of family bliss.

Mom thought she had a great idea, to cut the autism child's nails before calling it a night. With that thought, I wish I could rewind the clock. Our autism child, Dylan, has such high sensory issues that things like washing his hair or cutting his nails are still a major ordeal. I say still because we have been through 5 years of his life and 3 years of intense therapies to work out things. On most days, I think it's gotten 100 percent better. Tonight, I wondered if we'd gotten anywhere.

While my husband and I both held him down to cut his fingernails, he squirmed and screamed loudly. We are used to this and in our ideal world, he just gets used to it one day and gives in. Not yet. And now we are further from it. My husband took a cut and Dylan moved too quickly and suddenly blood was spurting everywhere. We all ran to the bathroom. He screamed and squirmed even more than ever and blood was splattering all over the bathroom. He was covered in blood and both of his parents were too. Within moments the whole family had blood everywhere. It's a wonder that a small cut can produce so much blood. It looked like a horror show had hit our house.

With Dylan's limited language, we tried our best during his hysterics to explain what an accident is and how sorry we felt. All he could do is sing some memorized songs that bring him an ounce of comfort. But, then he'd see the blood and get upset and squirm out of our arms and there flew more blood. All I could see in his eyes was "how could you do this to me?" The few things he did say cut me to the bone, I felt like it was my blood. "Mom, Mom" he screamed, as if begging me to take it all away. He has so few words and yet these brought me joy and pain. The joy was that he still needed me. My pain was that he didn't have more he could say to express his pain.

My 3-year-old daughter ran in the bathroom with band-aids telling him that she could make it all better. It's one of the many screaming ordeals she's observed in her short life. Only this one was different: there was blood spattered everywhere. What a beautiful thing that she tried to help. What a sad thing that there wasn't anything I could do to make it go away for her. Mommy guilt rages, we can't take autism out of the typical kids' world either.

The blood stopped in what was probably only 10 minutes, but felt like 10 hours. I held him in his bed till he fell asleep and looked at the blood splattered all over my clothes. As I lay there, a flood of emotions came over me, why did God think I could mother an autism child? Why do such simple things such as cutting fingernails turn into such major ordeals for Dylan? Why can't I make it all go away? Why? Why? Why? The mommy in me wishes it could all make sense and I could create a world that makes sense for me and my autism son.

Dad Says:

When my wife says nail cutting time, I think of all the nasty things done to me over the years. Of all the bullies, the nasty teachers, and bad bosses, cutting an autistic child's nails beats them all.

On the best day, cutting my kids nails is one of those chores that you never finish. You know, like an assignment from the Hades foreman, after a really nasty life. But it's not. It's the day to day. And the really horrible thing is, it must be worse for him.

Here is the play-by-play. The second my kid sees those shiny nail clippers, he tenses up. Then he comes out swinging. It wouldn't be so bad, but he has these comic-book strength nails. With dirt caked under them. From experience I know that anything this kid scratches is going to be infected. Like my face.

So I get my wife to hold him down. Half-heartily, she gives a hug to the now screaming child.

"NO NAILS!" He yells, as he flips around in my wife's loose arms. Then, out comes the business. My wife pulls out these monster clippers, for toe nails and talons and such. These are the only two things I have to cut his nails.

I have to push his arm against the bed, then move his fingers out. This is the only way I can get his now-wet-with-perspiration hand flat. It is the only way I know how to cut his nails. It takes all of my hand strength to hold and cut. My son uses his other hand, and his feet, to keep me from bringing the nail clippers closer to his nails.

The first nail goes well. After a kick to my face, so does the second. The third nail, well, that's where the pleading to "hold him down" reached deaf ears. His sweat soaked hands slipped and I couldn't hold him.

"Clip." Went the clippers into soft flesh.

There was a brief second of silence. It was broken by the phrase, "I'm trying to hold him." Then screaming. And blood.

Bandaging an autistic child is really difficult. He kept trying to keep his hands clean by waving them back and forth. Even though it was a little cut, there were droplets all over the white bathroom floor. My three year old calmly brought us the bandages.

After about an hour trying to hold him still, for a very minor cut, we were able to bandage him. Then he kept trying to tear the bandage off. I looked at my wife. Her white shirt was ruined. She had blood on her face.

"You put her to bed, and I will stay with him." She said.

My daughter wasn't affected by any of this. She did cry, but it was for her kitty cat. She can't sleep without it.

'At least one person is normal' I thought.

After he went to sleep, the blood was cleaned up off of us and the bathroom, my daughter was crying. She had thrown up. I assume it was stress.

All this came from cutting fingernails.