45 minutes

That is how long it takes Little Bug to get his pajamas on by himself. With the right choices, these can be the best 45 minutes of our day. We could rush and do it for him.  We could grow impatient, telling him how it isn't buttoned right and how we need to go to bed. It could take 2 minutes.

We like that it takes 45 minutes. He grabs his pants and struggles to pull them- ensuring that they aren’t twisted and no tags are contained- easily 5 minutes. He has to situate his shirt on the floor so that it is in front of him and upside down- the head is by his feet (give about 3 minutes for this). He then puts his hands in the sleeves and flips the shirt over his head and onto his back. Allow 3 to 5 minutes for celebration.

Now the tricky part- buttons! The shirt has four buttons and each takes about 5 minutes. He must do them himself- he doesn’t want our help, he wants our attention. We patiently watch him do struggle to do the buttons. He talks to himself and chews his lip as he gets frustrated. Right before he melts down, he gets it. 

Finally, success. We jump and celebrate for 5 minutes… then we go to bed. These are wonderful moments.

Teaching someone to be a good friend

One of the things we struggle with the most is the lack of empathy. Little Bug has an incredibly hard time understanding that other people feel things completely different from what you do- you know, mind blindness.


A new child joined the school last month and has cried every day since- on the way there, during all portions of preschool, and on the way home. Needless to say, this is a bit much for Little Bug. Every time he gets off the bus, he tells us about the little boy, “E was fying fying fying. I said No fying- be quiet!”

We have told him how to be a good friend- you could say that we practice this. Nick will pretend to cry and I tell Little Bug things he could say to make Nick feel better. We talk about how Little Bug cries sometimes and the things we tell him. No change. Every day, he comes home with stories about how he told E to stop crying.

I don’t know how else to teach this- Nick and I are empathetic and caring- for each other, him, our family, and friends. Little Bug sees this modeled all the time. However, it isn’t picked up. Is there another way to teach this?

What makes you special?

Little Bug, Nick and I have been having lots of conversations regarding boys and girls and moms and dads. It started last Wednesday when Little Bug looked at me at dinner and said, "MOMMY!"

I didn't get upset. I didn't get angry. I simply asked, "What do you mean?"

"...says you are a girl." Interesting. Apparently, someone has taken it upon themselves to discuss with Little Bug who really is a daddy and who isn't.

Now, I am not naive- I know that Little Bug and I will talk about this a lot- to the point of making me crazy. I know that he may hate me for a while when he gets older and his friends give him shit. I know that he will always know, above all else, Nick and I love him more than our own lives and that is what matters. I believe that he will accept it and be proud of having two daddies- even if one is a special daddy.

What I do mind is that someone took it upon themselves to get into this with my son. While he has told us who said this, they deny it. It's a tricky situation.

But I digress and want to get back to the really cool part of all this mess. As I said, we have been talking about daddies and mommies and parts etc. I explained to him that I was born a girl, but am a boy. Whether he understands that at 3, I don't know, but I want to be honest with him. Regardless, he seemed unphased and went back to calling me Daddy Blake.

Yesterday, he brought it up again. He began counting the number of boys and girls in our house. He stated, "4 boys- you, me, Fink, Nick. 1 girl- you."

I looked at him and asked, "Am I a special boy?" I asked this hoping that it would ease us back into the whole transgender thing.

Little Bug looked at me and beamed, "Yes! Me special too!"

"I know you are, bug. You will always be special and amazing to Daddy Nick and I. What makes me special?"

He looked at me and beamed again. "Because I love you."

I am happy to special that way above all others.

I AM A LIAR (at least my son wants you to think so)

During Little Bug’s parent teacher conference, we talked about one of his new behaviors- he gets stuck repeating the following, “I’m Little Bug. I’m three.” He will say this over and over again.

Nick and I have tried to get him to say “What’s your name?” but this never works out because when we prompt him, he tells us his name. During the conference we explained that we think (operative word here) is his attempt to initiate social interaction, unfortunately he can’t ask what someone’s name is.

(If you know anything about foreshadowing and children, you know where I am going here.)

On the way to the doctor’s office, he looked at me in the car and seemed to really think. His little brows furrowed and he frowned. He opened his mouth and would start to speak and stop. I knew that whatever was going to come out was really hard for him.

Finally, he looked at me and said, “What’s your name?”

A huge smile stretched across my face as tears spilled over. “I’m Daddy Blake. What’s your name?”

We continued this game all the way to the doctor’s office. Where he asked for the nurse's name.

I am happy to be this kind of liar.

Confessions

This post isn’t really about Little Bug or ASD, although they are featured heavily. It isn’t about getting suggestions or brainstorming, although that is always helpful. It isn’t about health insurance or co-pays, although they are a part of it. It is simply about some things I struggle with and wanted to get out.

Confession- this isn’t getting any easier. I expected that over time, it would. Somehow, I would accept certain things and move forward. I thought that I would be okay with people not understanding by now. I thought that at some point, I would let go of the sorrow I feel when someone brags about something their 2 year old can do. Something I watch Little Bug struggle with and can’t do. At some point, I wouldn’t be jealous for Little Bug.

Confession- money makes me insane. Now that Little Bug is out of the Birth to Three program, we are trying to cover all of the therapies ourselves and with insurance. Our insurance, good insurance, covers Speech and OT with a $35 co-pay visit. In a month, that is $280.00 of just co-pays. It doesn’t cover a behaviorist at all- who we have decided we need because for some behaviors, we are at a loss. The behaviorists I have found through my own research and recommendations from friends and local hospitals start at $100.00 an hour. One was $190.00 an hour. If we go with the cheap one, that’s another $400 in therapy costs a month. A total of $680.00 a month on just therapies. I have a feeling that the above amounts are typical for a family with ASD and probably on the low end because we have insurance. Like Ted Kennedy says, it does feel awful to look at someone you love and know that there is something that could help them, but not be able to afford it. If we try to pay for all of the above therapies, we are $200 short a month. Nick and I are left with the following dilemmas-

Do we save for retirement or pay for Little Bug’s therapy? How do we do either while keeping our heads above financial water?

Confession- I feel guilty a lot. I feel like I should have known what was going on with Little Bug earlier. I was so depressed and felt panicky about him all the time (even if I didn’t let people know it). I feel like I should have listened to myself. I feel like if I don’t spend every waking minute with him, something will go wrong. I feel guilty at times for the growth that Little Bug has made. It seems unfair the way this works out. How some kids progress and others progress differently. It makes my heart ache and tears spring to the surface.

Confession- I hate the term splinter skill. There are lots of people- NT people- who are really good at one thing; in fact, most of us are. This achievement isn’t looked at as an abnormality. It is expected. Yet when people with ASD are good at something, it is called a splinter skill and minimized as though somehow, because they are Autistic, having amazing skills is less amazing.

Confession- I worry insanely for the future. I worry about whether he will be able to work or live on his own. I worry about how to prepare for the worst case scenario. I worry about Nick and I being able to last through this turmoil of split shifts and only seeing each other part of two days a week only for another three years. I worry about what happens when Little Bug is too big for me to make him do anything. Right now, he is too heavy to carry for long and is over three feet tall. What happens when he is over 4 feet tall and 70 pounds?

Confession- his self injuring isn’t stopping. It scares me. It makes me hurt so badly to watch him bite, scratch, hit, and throw his head on the ground. I feel so small. At times, it is all I can do to stay with him and hold him while he thrashes. I hate watching him hurt himself. I hate that there isn’t anything that I can do. This weekend, he hit himself hard enough to bruise his face and hand and cause them both to swell.

Final confession- I realize that the answer lies within us. I realize that I must give myself absolution. I realize that I still need to work on myself in order to make this work. I realize that I can’t worry so much. I realize that I need to listen to Little Bug and be in the moment. I need to stop mourning for things that haven’t happened yet and appreciate what is happening now. I realize that I need to do my best and accept that mistakes will happen. I realize that I have the power to make a difference, in Little Bug’s life and in others. I realize that there is always hope.

What do you realize?

Parents and Self Advocates

Recently in the NY Times, two perspectives were provided of a life with Autism. One was that of a parent and the other of a self advocate. These perspectives were provided in response to the following study-
http://www.sciencedaily.com/releases/2009/07/090708153233.htm

An excerpt:

“"Both groups of women are dealing with children who need high levels of care-giving. But there is something about autism that is making a difference and adding stress and psychological distress to these mothers," said Annette Estes, lead author of a new study and associate director of the UW Autism Center.

Surprisingly, the research also found no link between a child's decreased daily living skills and increased parental stress and psychological distress.

"This finding was counterintuitive," said Estes, who is also a research assistant professor of psychiatry and behavioral sciences. "If a child has more needs in getting dressed and in other daily living skills, that means the parents are working harder and seemingly would be under stress. But it is not the hard work that is stressing the mothers. Our findings really pointed to the behavior problems that can occur with autism. Children with autism had significantly higher levels of problem behaviors than children with developmental delay."

These behavior problems included such things as irritability, agitation, crying, inappropriate speech and not being able to follow rules.

For this study parental stress was defined as being the stress directly related to a person's role as a parent and parenting a child with a disability. Psychological distress is more general stress, such as that experienced by a person who is nervous about her job or life in general but may or may not be confident about her parenting.”

The parent’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/the-unvarnished-reality-of-autism/

The mother states that she despises euphemisms like “tantrum” or “crying”. She gives examples of her reality with her son.

The self advocate’s perspective can be found http://parenting.blogs.nytimes.com/2009/07/22/autism-from-the-inside-looking-out/

The self advocate gives suggestions regarding behaviors and insight into the behaviors. She also describes how reading the mother’s perspective made her feel.

I have read the comments on the articles that include these posts. Often, a line is drawn in the sand and people are choosing sides. I believe that both perspectives are valid as they are the authors’ experiences. I struggle with the idea that a line has to be drawn in the sand over these posts and a side chosen. I think that these items show two very valid and real sides of the emotional coin that is ASD.

I understand when the mother states that often the reality of raising a child with ASD is varnished over to make it more palatable to the masses. I too hate when I talk about something that is hard for Little Bug and its results, only to receive a reply of “all kids have tantrums” or “all kids do X.” While I appreciate that the person saying it may be trying to either make me feel more secure in a situation I am having difficulty with or truly not understand, usually I feel isolated.

When this happens, I feel like people *don’t* understand. They don’t understand that some of the “tantrums” Little Bug has at times last a couple hours and are uncontrollable tornadoes of emotion and physical injury. To me, that isn’t a tantrum. To me, it is a crisis in which I worry about my child injuring himself or others.

I laughed when I read the words “irritability and agitation” in the study. Little Bug has an acute need for sameness. All the bottles in the shower must be placed on the same shelf every time and labels must face out. If they aren’t that way, he will refuse to get in the bathtub. While this may seem minor to you or be described as being “irritable”, it is crippling to him. He becomes incredibly “agitated” by loud noises- trucks, motorcycles, and airplanes. By agitated, I mean that he covers his head, hides under something and screams. To him, it seems to appear that there is some kind of imminent attack.

I disagree that our life is a nightmare. I believe that it has nightmarish moments- like when he tried to eat glass, tries to break out of the house because he sees something he wants outside, or when he has a fever of 102 but cannot tell me what is wrong because he doesn’t feel pain and lacks the verbal skills to understand what I am asking.

I wish that I could better identify with the self advocate. I have found myself reading more books written *by* people with ASD rather than parents. I want to know what drives the behaviors and feelings. I want to help.

I love my son deeply and fiercely. I can’t change the fact that he has Autism. I am not ashamed of him. I also am not ashamed of my feelings. I fully intend to have Little Bug read this blog. I know that he may be hurt by some things and enjoy others. I know that regardless, he will know that it was written with love and concern. Most of all, I know that I will listen to his experiences and feelings- even if I don’t like them or feel hurt by them. I will because they are real and valid.

It is a gift

I marvel at Little Bug every day, but have been more so recently as the anniversary of his diagnosis has come. I know I have neglected this blog, but I needed some space to appreciate from a distance this gift. Granted a year ago, this was not a gift in any sense of the words. This was a cruel joke that knocked me on my ass and took my breath away. It paralyzed us with fear and tortured us mentally.

I look at where he has come from and I am astonished. A year ago, he had ten words. Think about that for a minute. Ten. Words.

He couldn’t tell us whether he was hungry, thirsty, soiled, or tired. He couldn’t tell us what he wanted to do. He didn’t look at us in the eye almost ever. Little Bug couldn’t dress himself; he couldn’t use a fork or spoon. He didn’t play with other children or even tolerate them in his general vicinity.

When we started at Birth to Three, he didn’t participate in the activities. He still had 10 words but several signs. He couldn’t sit at art time or circle time. A majority of his time was spent screaming and biting himself. When he wasn’t doing those things, he was screaming and trying to bite other people.

Gradually, he has become more tolerant of other children. He is now taking turns with his therapists and seeking out a familiar peer consistently. A friend.
He can now say so many words that I have lost count. I wasn’t sure that we would get to that day. He is saying sentences and asking questions, “What you doing?” or “What happened?” He is now asking to play with the neighbor’s children.

This is a gift that we marvel at every day. We stop and look at each other when the amazing things happen. Our mouths hang open and tears rush to our eyes. We are left speechless and breathless.

And yet, there are people in Little Bug’s life who don’t see this. To them, this is boringly normal. Of course he would say sentences. They don’t grasp what obstacles all of our children in this community overcome. The 40 hour work week our children endure to learn how to play. They don’t understand that it takes for our children to simply be okay with loud noises, people, or bright lights.

To them, everyone can do it. It is assumed that everyone will go to school with “normal” kids. That they will graduate, get a job, and form relationships.
We know that the above goals are not assumed. That our children will work arduously in order to achieve each and every one of them. That we will work strenuously to give them each and every opportunity to succeed that we can. We will hope fervently and worry insanely.

My heart aches that the experiences our children go through are belittled as normal. It is funny how normal has become such a dismissive term to me. I realize that most parents of children with disabilities and most people with disabilities strive for normalcy in their life. Just don’t forget that what we all do to achieve normalcy is extraordinary.

I am in awe of the parents who work with their children in order to help them achieve goals- whether it is being able to go to school or tolerate hugs. I am in awe of the people with disabilities that remind us to look at life from a new perspective. Thank you all- Little Bug, J Man, Bee (you know who you are) Uncle, and your families and therapists for giving me this perspective. You are an extraordinary gift that I will always treasure.

Dare I say it?

Little Bug got a new big boy bed last night courtesy of the Nas-Nas. He was so excited that he shook. He ran around telling us about his big boy bed- BROWN! BIG! Yeena's!

After Nick and I got it put together- which for an Ikea piece of furniture involved very little cursing or yelling- Little Bug immediately scrambled up on to it.

He demanded sheets, which we didn't have for a twin. I managed to oragami style make the bed with a queen sheet. He asked for his pillow, a minky- that's binky to you, and a milkshake (that is what he calls his milk. It gets him to drink it, so really, I am not going to be too specific.)

He wanted to lay down in it and go to sleep. He was pretty miffed that I wasn't going to sleep with him. Yells for Daddy BAKE echoed for a while. He finally quieted down and then came back to our bed.

It seems as though we won't be co-sleeping too much longer. He is becoming more independent every day.

He has begun to sit and pee on the potty- of his volition. He has, in fact, earned two potty reweards.

He can now take most of his clothes- damn those shirts- off by himself. He can also put his pants, little swimmers, and socks and shoes on by himself.

I know that most people are excited when their kids can do these things. For the most part I am. I have to admit that with school coming in the fall and these independent actions, I feel a little lost. Little Bug has been so dependent on us for so much longer than most kids, that these bursts of independence leave me feeling a little lost.

Chewbacca Defense anyone?

I don't know if any of you watch South Park, but yesterday's conversations with Little Bug reminded me of the Chewbacca Defense. Here's the link, but be ware that there are plenty of bad words in it...

http://www.southparkstudios.com/clips/103454/?searchterm=Chef+Aid

Little Bug has been having difficulty with eating again, but more in a "I'm finally 2 developmentally and I am going to push your buttons" way then in a sensory way. This of course means that at dinnertime there are tons of negotiations. I put food on his plate and he immediately yells Yucky and pushes the plate away. We eventually divide up the plate to the point where I get him to eat what he wants and he doesn't complain so much.

Last night, he used a beautiful argument- HIPPO! This was shouted, whispered, and said every time we asked him to eat. What might you ask does this have to do with dinner? NOTHING! That is what makes it a beautiful argument. It distracts you from the point at hand and is ridiculous and forces you to not be so frustrated. All the while, the child gets to not eat his dinner as you are mulling what Hippo could mean- was there a hippo on his plate, did we talk about hippos, is it animal month at school?

Nope, just Hippos. Much like the Chewbacca Defense, it has *nothing* to do with the subject at hand, and yet is hard to argue with.

One day, Little Bug may well create a new defense- the HIPPO defense. Heaven knows that he thoroughly distracted me with it many times last night. Now, if I could only use the Hippo defense as a grownup....

Lump Update

We got great news yesterday. Apparently, it is fairly common for children who have lymphatic malformations to have lymph nodes that retain their swelling- sometimes up to a lifetime.

They feel pretty confident that is simply an enlarged lymph node that will always stay enlarged. They will re-examine it in two years to see if it has developed. They also gave us the warning signs of a lymphatic malformation. Its funny to have, as we didn't need them before because Little Bug was born that way.

Lump

We have the appointment today at Children's Hospital with Little Bug's surgeon to find out whether the lump on the back of his head is a lymphatic malformation.

Even though we have done this once, I can't help but feel sick with worry. Hopefully, this is useless and baselss and I will feel idiotic in 4 hours from being so worried.

Please hope that I am an idiot. The option that my spidey senses might be right is a far scarier option than being wrong.

Identity

Little Bug and I were walking down the sidewalk yesterday and he began to list whether people were boys or girls. This was surprising for many reasons. First, we haven't really worked with him on this. Second, because of who I am- a transgendered man who has had a baby and at times can look feminine- I *try* to not identify people by their gender.

As I listened to him, I held my breath. He pointed to me. This is it... this is the moment that I have been dreading. I was terrified of how he might identify me. I am even more scared of how my identity would affect him. He is so literal. He knows me only as daddy, but has realized that my body and his and Nick's are very different.

I, at times, have considered forgoing the choices I have made. My rationale was that it would make it easier on him to just undo the life I have made and fit into the mold. It won't. To me, that would only teach him that making the easy choice versus the right choice is what you should do; that rather than persevering and forging your path, it is easier to succumb. Trust me, I really tried to be a girl and really tried to fit in. It never worked and I hated my life.

Although I may have an odd life with few friends, the friends I have simply accept that I am who I am and make no bones about it. This can be a scary path to be on, but I will show Little Bug that doing what you believe is right is rewarding, even when just about everyone else can't understand why you do what you do. I will be his example of "OTHER". There will always be a person/place/idea, etc. that doesn't fit into the dichotomy to which our society so desperately clings. At least I can try to make this less painful for him.

He pointed at me and smiled. He signed Daddy. I asked him- am I a boy or a girl? He just smiled. I am happy to be DADDY above all other identities that I may have.

He doesn't do this grey things with anything else. He categorizes and divides. I imagine his head is full of Venn diagrams for everything- toys, foods, clothes. “GREY MUST BE ELIMINATED!” He categorizes everyone, save me and himself, correctly. I am just daddy and he insists that he is a girl. Maybe this is a phase or maybe this is how it will always be. I am happy to be an exception to his rules.

Clouds

Yesterday Little Bug and I were sitting in the back seat together on the way home from the bus. He looked out the window and said, "White... Sun." Not understanding because the sun was on the opposite side of the car from where he was looking, I checked it out.

There were the most beautiful, puffy white clouds in the sky. I looked at him and signed CLOUDS. I gave him a second to let the sign sink in and then told him, "CLOUDS."

"Cluh- oowws- ds." He tried on the word, seeing how it fit. Apparently, not well. "No. NO! WHITE NO! UP HIGH!"

He called the clouds snow that was up high. He looked at me to see if he was right and all I could do is smile.

From this day forward, clouds in our house shalll be known as white snow up high.

Interesting experiences

Since Little Bug has been diagnosed with ASD, we have run into a quite a few families that have someone on the spectrum. We have found that, in our experience, people fall into one of two camps:

The first is the incredibly compassionate community that we have found through the internets and Little Bug's school. We have met several parents who are willing to share, support, celebrate, and console each other. They realize that we are all in this together.

The later is a more frustrating beast. Recently, we have run into highly competitive know it all parents who make us want to scream and stim in the corner. These are parents that extol the virtue of what works for their child and whatever you do for your child is wrong. They deny that your child has ASD because your kid is on a different place on the spectrum than their kid. They are incredibly competitive about who's cross is heavier to bear.

What I want to tell these parents is that it's okay. We may never understand your hardships or challenges. We may never see eye to eye about the myriad of treatment options to chose from. But, I want to support you and work with you. I want you to know that I empathize with you and care about your situation. I want you to know that this isn't a competition. Trust me, we have too many hurdles- school districts, insurance companies, and ignorance- to fight with each other.

In a community that often has children demonized as monsters and sick by the very groups that are supposed to have our children's best interests in heart, we must stop fighting each other. We must stop belittling each other's experiences. We must stop discounting other people's experiences by denying a diagnosis or treatment.

We must work together.

I know that personally, I have very little time. I work 40 hours a week and commute another 12 on top of that. I work with Little Bug every day on items directly after work. I then read the laws, websites, and books that affect my child. I fight with the school district and coordinate all of Little Bug's therapies. This leave me little time to be a good partner to Nick, sleep, eat, bath, and occasionally have a social life. Nick works part time and goes to every therapy with Little Bug. He cleans, cooks, runs the house in general, and does most of Little Bug's therapy during the day. He reads all the same material I do and supports me in our fight with the school- the only reason I do it is I am loud, pushy, and don't have a problem with people not liking me.

I don't have time to fight with other parents of children with ASD. I don't have time to worry about whether you think some one's kid *really* has ASD. Trust me, its none of your business and quite honestly, how would they fool all of those people. I don't have time to fight with you about GFCF diets, supplements, therapies etc.

We can acheive so much more if we simply stop fighting.

Which really is the lesser of the two evils?

It’s that time again- open enrollment for benefits- and we are stuck between a rock and a hard place. On one hand, we can keep the policy we have which means that every month we will have $280 of co-pays for Speech and Occupational therapy alone. On the other, we can go with a different policy that will require us to pay a $300 deductible and then be done with it. Sounds like the logic solution, right?

It gets tricky when you start looking at anything else besides Little Bug’s therapy. Anyone who knows me knows I like to be prepared. I also am a worrier. Having Little Bug in my life has done a lot to assuage my worry- I am more in the moment. At the same time, it has also made me a better long term planner as we have to continuously look to the future and make decisions today for where we hope to be.

Sometimes, looking to the future can include planning for an unforeseen incident. With the second insurance option, we will have to pay 10% of any hospitalization, lab work, X rays, ambulance rides, prescription, rehab, surgery, etc. Given Little Bug’s medical track record- 4 CT scans, 3 MRI, 2 sets of x rays, 1 day surgery, 1 face lift that involved 3 surgeons, 2 anesthesiologists, 5 nurses, and a neurosurgeon, 16 trips to the emergency room, 7 trips to Urgent care, and so many doctor’s appointments we can’t count, it seems like a bad bet.

While both choices are expensive, at least one is certain- finite amounts for any situation- where as one is 10% of any number of unforeseen expenses. All it would take is a couple of ER trips, to make us financially doomed. For now, we will have to go with the lesser of two evils.

What neither of these policies cover is the additional therapy and supports that Little Bug needs- a behaviorist. Again, for this we are stuck between a rock and a hard place. Our first choice is paying someone roughly $100.00 an hour to come in 4 times a month to work with us and Little Bug on things that affect his home life. The second option is a much bigger immediate investment- parent training. Now both sides have their costs- the first is sheer financial to the tune of $4800 a year. The second is limitation. We cannot afford to pay for training in more than one type of therapy- ABA, Floortime, Rapid Prompt (pick one). Secondly, it is limited in that it would only be our input in the therapy. Nick and I are not experts in much besides Little Bug. There comes a time when you have to have outside influence and perspective in order to see the whole situation and make good choices.

We also have one other option that we are contemplating- working with what we have. Simply doing the best we can with the knowledge we have and using a behaviorist only as a last resort. For me, this causes feelings of guilt and worry. Am I considering this because of finances only? If we skip either of the other options, will Little Bug be missing resources? Can we do it ourselves? I know that Nick and I have read volumes of books when it comes to ASD and home therapy solutions. We have resources in the online community that have been amazing to us.

I think for now, we will have to take a leap of faith and trust that we can do this.

Pop go the Weasels?

I recently stumbled across and article on MSN that was entitled The 10 WORST DADS. I don't knwo why I looked, but I did. And the third worst dad of last year was Thomas Beatie. He is a transgendered gentleman from Oregon who had a baby last year. Apparently, that makes him a bad dad because "Teaching kids about sex is tough enough. But when this bearded, deep-voiced transgendered Oregon man popped out a bundle of joy earlier this year, our jobs as fathers became even more complicated: "Sit down, son. I need to talk to you about the birds, the bees…and the trannies." Oof."

That's funny, as I would think that teaching your child to love and accept people- unconditionally- would make you a good parent. Maybe I am biased as after all, I am one of those dubious trannies who had a baby too. I was on hormones for almost two years when my partner and I wanted to adopt. We were told that we couldn't adopt because being transexual is considered a mental illness- much like being homosexual was. So, we decided that we wanted a child anyway and I began the process of weening myself of of Testosterone. Eventually, Little Bug was conceived and born.

Our friends were so supportive about it- they made Nick a shirt that said- HE'S having my baby. Which ofcourse Nick proudly wore everywhere. The funny thing about this situation is that Little Bug has not had any difficulty. When people call me she or mom- he corrrects them by yelling "DA!!!!!" or signing it over and over again.

My son may have a harder time in school- he may get made fun of. Hell, he may even hate us for doing this. But, hopefully, we will have raised him right. He will know that people should be able to get married no matter who they love. That HE and SHE are simply words and what matters is a person's actions and what is in their heart. That no matter the color of your skin, who you do or do not worship, and who you have sex with, you desesrve an equal place in this world. When my job's done, he'll know.

Silver Lining

People often tell you that you need to look on the bright side or look for the silver lining. I used to scoff and roll my eyes- more happy b.s. to fill your head rather than dealing with being upset. Looking back, I realize that sometimes, there really is a silver lining. It may not always be immediately apparent or easy to accept. For example, I am 26 years old and have lost three parents- when I was 7, 11, and 19. Most people wouldn't see the silver lining in that. However, to me, I have gained a lot of strength, determination, and independence from going through this. I never would have met my mom if my birth parents were alive. Sometimes, a silver lining can only be found once the clouds are gone and you have time to reflect on what you saw.

Yesterday's silver lining was more immediately apparent. Little Bug had the flu and needed to be changed frequently. For the first time, he was able to tell us that he went potty- he signed POTTY and said PAW. He was able to tell us where it hurts. I was able to calmly take his temperature for the first time ever. Yes, it sucks that he was sick, but it was so much easier for him this time. We could find out what hurt and where and what he wanted to help his tummy feel better.

He has a new sign- leaf. Leaves have become very interesting to him now that it is fall and they are scattered about. On our walks, I always give him a handful to throw. He loves to watch them float to the ground and he always laugh.

Fear and panic in Tacoma

I find that there are days when it feels like I just found out that Little Bug has ASD and I am bitten by Fear all over again. Fear is a nasty creature that creeps in when you are most vulnerable and seems to grab hold to your heart and mind. Fighting Fear is daunting and overwhelming. One thing you have probably noticed about me, I am a very methodical person. I love me some lists and organization. Today, I have organized my fear:

• Safety- Little Bug is a runner and self injures. I worry that he will escape from our home, which recently has felt like a fortress, or that he will run off in public. To combat this, I am going to purchase and install door chimes- as he has figured out the traditional baby safety devices and locks. We are also trying to train him to wear an ID bracelet. Self injuring is a losing battle. At this point, when he does it, we just try to distract him to a more healthy way of getting that sensory input.
• Speech- I am so proud of his 30 spoken words- with 10 of them unprompted. When I think about it in terms of development, my panic begins to rise. All we can do is keep doing what we are- Signing Time, sign language and our own version of PROMPT- and wait for speech therapy.
• Independence- Little Bug doesn't know when he is wet or soiled. He doesn't understand that HOT= dangerous or another billion safety examples. I worry that he may never be able to leave us and have an independent life of his own.
• Relationships- The past two months have been the best we have ever had with Little Bug- as we have finally gotten to have a relationship with him. He is doing really well with therapy and making HUGE strides forward. I am terrified that he will regress- I don't want to feel another kind of loss.

I think a majority of my fears are routed in grief- I grieve for the dreams we had for him. I grieve for the the time we missed as we didn't have much of a relationship with him. I grieve for the time we are missing now because of all the ASD things we need to do. Most of all, I grieve because I was powerless to prevent this. I accept, that while I can't prevent this, I can help Little Bug excel and reach his full ability.

I realized, that for the first few months of this, I rushed to solutions and research as a way of avoiding dealing with this grief. I was the person who researched and reached out. I was the person who shopped for therapy tools and said- we need these. I was the person who hid behind a mask of acceptance through work.

I realized this yesterday when we went Halloween costume shopping- which was hell. He screamed when we put one on him, but screamed when we took it away. He tried to hide in the bottom of the grocery cart because he was scared. There was nothing we could do to make it right.

I also realize that I will accept this with grace and strength and tears. I realize that DN and I are stronger in our relationship as ASD has made us a team. I realize that I would give Little Bug the world to help him- and I will do it every day. I realize that this will be more than okay- this will be great and we will enjoy it- just differently than how we had dreamt it.