The Sparks Experience (Part 1)

The girl-child's teacher and guidance counselor first made the suggestion of Asperger's during the fall/winter of her 1st grade year, 2012. The school brought in an excellent psychologist who we still see today and we got the initial diagnosis just before we were released for summer break. This would have been enough for an IEP (if her school offered them) but apparently some places/insurances require more thorough testing and our doctor made the referrals to Vanderbilt and the Sparks Clinic at UAB where they would perform more detailed evaluations (whichever could see us first). We knew the wait would be long so were surprised when we got an appt at Vandy in late Oct (or maybe it was early November) of 2013. We drove up only to see a Nurse Practitioner who ruled out any underlying medical causes of the symptoms we had seen and said that the girl-child should indeed be tested for an autism spectrum disorder (duh) so back on the waiting list we went. They said it would be 4-6 months. We were able to get on the "in case of cancellation" list at UAB since fortunately my job allows me to take off with short notice. 8 months later, we got the call. We received word on Tuesday that there was a cancellation for Thursday at 8:30 so I made the calls to work and for childcare for the baby and on Thursday morning, the girl-child and I arrived.

Reception:

The waiting room was much better than I'd expected. There were plenty of toys, books, and a movie going. Only 1 other child was there when we arrived. He was apparently on the non-verbal end of the spectrum and was having some serious behavioral issues. Adding to the mom's problem of keeping him in check was the fact that they had arrived 3 hours early for his appointment. My girl seemed to at first be a little upset by his noise and magazine-throwing and sat looking quiet and a little scared. We received our schedule for the day and of upcoming appointments as well as two pages of suggestions for nearby lunch places and fun places nearby to fill any gaps in the schedule and I tried to entertain her (and distract her from the commotion) by discussing our options for lunch. Fortunately, we didn't have long to wait.

Hearing:

The first appointment on our list was a hearing check. My first thought when the group of young ladies came to the door to call us back for the appointment was, "Where are the adults?" They all looked so young! We went into what basically looked like a bomb shelter and the girl-child was given two soft earbuds to put in. Through an observation window, the girl-child was observed raising her hand in response to a series of beeps. She repeated back a series of words such as "airplane" and then we were done. Nothing wrong with her hearing except a bad case of "Selective Hearing". Sometimes she decides she doesn't want to hear so she pretends not to.

Occupational Therapy:

After going back to the waiting room (the door had now been closed to barricade in the poor child who still had a solid 2 hours before his appointment), we were pretty much immediately called back for OT testing. I was allowed to sit behind an observation window as the girl-child traced lines, dribbled tennis balls and put pegs into small holes demonstrating her motor skill ability. I then was called in and interviewed about my take on her motor skill difficulties and what I hoped to obtain from the visit (diagnosis, extra services, etc.) While I talked, the girl-child played games with the staff and began to loosen up.

Speech/Language:

We were again taken back to the waiting room (the 3 hour wait kid must have finally been taken back) and again were immediately called back for the Speech/Language segment of the testing. We started with basically the same questions for me as in the OT session and then I was allowed to step into the observation room while the girl-child was assessed. To me it seemed more like her comprehension skills were being assessed than her speech skills (ex:"Show me the picture of someone who has been doused; "The man said 'I think I'll hit the sack.' What did he do?"). Some of the questions seemed hard for an 8 year-old (ex: "The box is posterior to the ball. Point to the picture that corresponds). While the girl-child had completely found her groove and was making her usual jokes and cutting up with the girls performing the interview when we first started the Speech/Language portion of the testing (still not sure of all of their credentials but at this point I had figured out that one was a speech intern who would follow us throughout the process), she soon started getting tired, hungry and started having (I thought) trouble with focus. She had to ask for questions to be repeated several times which was apparently not allowed to be done. She started looking nervous, frustrated and and getting fidgety. It was time for a lunch break. As 12:00 rolled around, I was on the verge of stopping the test and telling them she needed a break. Finally, they also realized the time and called me back into the room. Apparently the test was supposed to continue until she missed so many (4 maybe?) in a row and since she wasn't missing any, they had to  keep going. (Go, girl child!)  After the scoring process of this OWLS evaluation as it was called was explained to me, we were turned loose on the streets of 5-Points Birmingham for lunch. (PTL!)

Lunch:

We walked the .20 miles through 5-Points, dodging cigarette smoke and cars, to Mellow Mushroom where the girl-child ordered world's largest slice of pepperoni pizza only to take two bites and remember that she doesn't like Mellow Mushroom's pizza. We were a bit rushed getting back and the 5-Points area is busy, loud and a little scary to two girls from the country, one of whom doesn't do loud, unexpected noises very well. If I could call a Mulligan, we'd have brought our lunch and eaten in the courtyard at the clinic. On the walk back, we got stuck behind two large ladies (no room to pass on the sidewalk) walking, talking and blowing their cigarette smoke into our air. Leave it to my walking Public Service Announcement to let them know, "We just heard a commercial on the radio that said that cigarette smoking leads to gum disease and you could lose your teeth." Ha! True that! We made it back to the clinic just in time for our one last appointment.

Vision:

This time, a pretty blonde lady named Dr. Dinkle and her side-kick (assistant? student?) came to get us with a pile of paperwork for me to fill out while they dilated the girl-child's eyes. (From my understanding, this optometry department is seperate from the Sparks Clinic, hence the need for additional paperwork. They submit their findings to Sparks and it all goes into one big report in the end, but billing, etc. is seperate.) It wasn't until I had finished my paperwork and she came out of the exam room that I realized the breakdown had begun. She totally did not understand why her eyes were being dilated and thought she was being blinded for the rest of the day. We spent the next 45 mins back in the reception area talking silly selfies, using my camera phone to document the progression of her eyes' dilation, calling Nana and basically doing whatever we could to avoid an all-out freak-out. 

By the time Dr Dinkle and friend came back to get us, the girl-child was sure she was going blind, would never see again and it was all my fault for bringing her to such a horrible place. Fortunately, she was must not have been the first child to have this reaction and toys were brought out to distract her through the eye exam. (Good, sensory stimulating, flashing, squishy ball-toys. Yay, Dr. Dinkle!) While they did decide the girl-child is somewhat farsighted and has a slight astigmatism, Dr. Dinkle didn't think we were at the point of glasses. Unless the girl-child starts to have problems such as headaches, we will follow up with them in one year and, if things have worsened, we may need to consider reading glasses. 

The fun:

Since we are frequent visitors to Birmingham for appointments (we see our beloved Dr. Le, Christian children's book writer and most importantly psychologist specializing in childhood ASD's, about every 6 weeks) we are always on the lookout for cool stuff to do in the 'Ham to add a little fun/adventure to each trip. Today we hit up Steel City Pops for a victory reward after the long day of testing (about 6 1/2 hours). Their popsicles, featured in Alabama Living's June 2014 "Worth the Drive" article, are made from whole ingredients with many of the ingredients coming from nearby farms and producers. SO YUMMY.

What's next:

We are scheduled to complete the psychology part of the evaluation process on June 30. Our parent conference with them isn't scheduled until Aug 4. We still have the above "on the autism waiting list" stamp on our schedule. Does this mean we have more waiting to do? Is there more to the test than what we are already scheduled for? Why the crap did I not ask while I was there? (Mom-bomb fail!) For now, we just carry on.

The Atticus Incident (To Tell or Not to Tell)

During our recent beach trip, the girl-child had been in the pool playing happily for awhile while I lounged pool-side with the hubs when I started hearing the voice of an annoyed mother who had obviously gone into Mother Bear mode saying loudly enough to make sure all parties heard, "Just don't worry about it, Atticus. If you say hello to someone and they don't say hello back, just don't worry about it." She was obviously worried about it, but I didn't really pay her much mind until a few minutes later she announced, "Atticus when people are rude to you, just let it go. You tried to play with her. She obviously doesn't want to play with you so just leave her alone", again in her loud enough to be heard by all, Mother Bear voice. About that time, I see my girl-child surface from a lap across the pool and yell, "I won! You came in second." Atticus (and obviously his mom) had no idea a race had begun. They thought the girl-child was ignoring him. She WAS playing with him, she just hadn't let him know. Without thinking, I hopped up from my chair before Mama Bear could make another angry comment directed towards my baby (and I assume me for being a crappy parent and not teaching my child how to treat others, from her point of view) and headed into the water and up to where Atticus and his Mama Bear stood. "What's going on? Is this about my child in the pink swimsuit?", I asked. "Well, Atticus keeps trying to play with her and she just keeps ignoring him", she replied. While the mama bear in ME wanted to reply, "Then why don't you do what you've been making sure we all could hear you tell Atticus to do, and just let it go?", I instead went into the "My Child Has Asperger's" spill and explained that social skills aren't her strong point and then tried to use the experience as a social skills lesson to get the girl-child to interact with Atticus appropriately. 

When you meet my child, you won't know that she has a "disability". She is bright, funny and exceptionally smart in many areas. She looks just like any other 8 year-old girl. She most likely will come off as just being quiet, introverted, quirky and maybe just a little rude. But in truth, she very well could have spent the whole beach trip surrounded by other kids her age and not interacted with any of them....and not cared a thing about it. That she thought she was playing with Atticus was a pretty big deal for her. 

After I had goaded the girl-child into telling Atticus "bye" and headed up to the room with her, I wondered should I have done that? Should I have made what could have been perceived as an excuse for the girl-child's actions (or non-actions)? Was it anyone else's business, especially a stranger who was, in my opinion, being rude herself? We have had the debate over to tell or not to tell over and over for the past year and a half since we first heard the "A"- word. First, it was do we tell the girl-child? We hesitated because we have never, ever, EVER wanted her to think she is in any way flawed or less than perfect. She isn't. AT ALL. Her brain is not broken. It doesn't malfunction. I even hate to refer to her as "disabled." Her beautiful little mind just works a bit differently, in it's own perfect way. We tell her that because she is SO smart, and because some things come so easy to her, other things are harder and we have to work to find the right ways for us to teach those things to her. We hesitated to tell her because we don't want her to use her diagnosis as a crutch. We don't let her get away with not finishing assignments or not doing things because they are hard. We are continuously pushing her to do things outside of her comfort zone. Her diagnosis may be an explanation, but it is not an excuse. We hesitated to tell others because of the fear of the label. We don't want her treated differently, babied or excluded because the way her mind works has a name. All of our minds work differently, after all.

We have started telling others because it is necessary. Necessary for her well-being (We feel teachers, doctors, etc. need to be informed to be able to help her best) and in all honesty, for mine, as well. When we got the diagnosis (or actually, I should say the suggestion of the diagnosis as the diagnosis itself was a long-time coming [whole nother blog]), after the initial shock and denial wore off, I started reading everything I could get my hands on about autism spectrum disorders. It was overwhelming, scary, and while some ASD traits were dead on, so much seemed not to apply to my girl-child and/or just upset me further for no good reason. The autism spectrum varies so greatly from one end to the other and I have yet to read about or meet another child just like mine. I eventually decided the books aren't for me. At least, not right now. The answers I was looking for weren't there. There is no known cause of ASD (although there are many theories). There is no cure and no definitive best treatment in any of those books. There is no roadmap. What has helped more than anything has been talking with other ASD parents. In order to find those parents, we have to speak up and say that we are right there with them and invite those parents to share with us and let us share with them. I want to read their blogs and I want them to read mine. Maybe something that has worked for us will work for them and vice versa. Maybe my blog will also help others like Atticus's Mama Bear understand the way my girl-child and others like her operate and be less ready to go on the defensive when they think one of these children is mistreating her child. 

This has been the hardest blog to figure out an ending for. Should I have raced into that pool all-guns-blazing ready to take on Atticus's mama and go bear vs. bear like something off of Wild America? Was this a "to tell" moment? I'm still not 100% sure if I made the right call. I have met parents who have chosen not to even have the testing done to obtain the diagnosis for a child they are sure is on the spectrum in an effort to avoid the labeling. They choose not to tell. I completely understand that point of view as well. We all do what we feel is best for our children. And again, we're all learning as we go. 

Why We Dance

I enrolled the girl-child in "Creative Movement" classes shortly after she learned to walk. I had dreams of having a little ballerina and then possibly branching out into the world of competitive dance and cheerleading. I had a plan. God had his. 

The girl-child was nothing but cute in her tiny "Suzy Snowflake" costume and the next year as well in the little pink princess-like tutu she and the other toddlers twirled about in, not really in any kind of unison, but precious all the same. 

Her third year of dance we, along with a few other parents and girls, decided to try a different school. The new school was great. The teachers seemed much more patient, most of the girls seemed to really come along in their dancing and the girl-child loved her teachers, Mrs. Emily and "Sweet Sue" as they were called. Looking back, these teachers are probably the only reason the girl-child wanted... well, maybe I should say agreed to....take a fourth year of dance. 

By this point, most of the other girls were able to stay in time with each other. They focused throughout their routine and no longer just did their own cute little things like when they were younger. Not my girl-child, however. During the few times we were let in to watch the classes, she looked bored, uninterested and couldn't focus on what she was supposed to be doing. Around this same time, I was learning new words like "Asperger's", "ADD" and "autism spectrum" and, while children with Asperger's generally have a limited area of interests that they master and basically become little geniuses in, dancing (at least in this setting) was obviously not one of a the girl-child's such interests. So, being as we aren't quitters, we stuck it out through the recital, then hung up her 

slippers. 

Was I disappointed? Maybe for a second in the beginning until we started discovering more of what her areas of expertise are (animals, science, etc.) and I am so proud of her that I couldn't care less that she will most likely never be a dancer or a cheerleader. In fact, I'm a little relieved. I never have to worry about seeing her little heart break in front of my eyes if she doesn't make the team or the squad. As an Aspie, she dances to the beat of her own drum. She may not always be the leader, but she is definately not a follower. She is unique and special and wonderful in a million different ways and we still dance. Oh, do we ever dance! We clear the living room floor, turn on some beats and let loose. We have a little "routine" we do where we twirl each other and it ends in a dip. We aren't afraid to break this out anywhere, and have been known to do so on a crowded downtown street when a band was playing and we felt the call. We just park the baby's stroller and let her watch us do our thing. Sometimes now, the baby will even dance along, swaying back and forth or side to side. 

We dance because life is hard. The special way her mind works may make it a little extra hard for her. It may make it a little extra hard for me. I have to figure out new ways to teach her things because I honestly believe with the right type of teaching, she can learn anything and will go extremely far in life, as brilliant as she is. She will probably be a scientist and discover a new species of animal or an engineer or a lawyer (she loves to argue!) I just may have to fight for her at times to make sure she gets the services she needs. And, inevitably, at some point, it will be hard for both of us because the other kids will realize she's a little different and some may be cruel. When they do, it will be my job to comfort her. I will remind her of all of the things about her that are beautiful and perfect and then we will clear the living room floor and we will dance like we don't have a care in the world. 

What's Up With the Name?

Welcome to the I am the Mom-Bomb.com Blog. In this first issue we will address some basic questions that should be asked of any blog:

1. Why did you decide to start this blog?

2. What is the blog going to be about?

3. What's up with the name?

4. Do you really think you are the "Mom-Bomb.com"?

Let's start by answering question #1. Easy answer: All my friends were getting a blog and I wanted one, too. Really. That's pretty much it.

#2. What am I going to blog about? Mostly my kids, our life and the projects and we do. A more appropriate name for this blog might have been, "Life for Idiots", because I feel like that's my basic skill level when it comes to teaching anything about life. So, maybe I should say it's going to be about the trials and errors of raising a child on the autism spectrum and her little sister. We will learn together as we go because as they say, "If you know one kid with autism, you know one kid with autism." Kids on the spectrum are all so very different and they forget to give us a roadmap when they give us their diagnosis. So, we try this, try that, have some fun as we go, and apparently write a blog about it. For future blogs, I plan on sharing some ideas that have helped tremendously with getting the girl-child as I will affectionately call her (we also have the fur-baby -although the girl-child will be quick to tell you that poodles have hair, not fur, and the Tooter-baby [yes, she will hate me for that name later in life]) to bathe herself and brush her teeth, two things I hope parents of atypical children do not take for granted because in our world, it's like climbing Mt. Everest at times. We have also done some fun Pinterest projects I want to share as well as some oh-so-yummy but easy treats.

3. What's up with the name? I am the mom.com was taken. The girl-child (as you will see she is extremely bright and witty) helped me come up with the name.

4. Do I really think I am the Mom-Bomb.com? Absolutely, not. As already indicated, I realize that I have no clue what I am doing the majority of the time. All I really know how to do is love my babies with all I have and "keep on swimming" which brings me to another main purpose of this blog: to remind us all that sometimes, even when you feel like a total L-7 weenie, confused and lost as all get-out, you still have to pull it together, pull your shoulders back, chin up, (maybe even look in the mirror all Stuart Smalley-like) and tell yourself, "I am the Mom-Bomb.com" (or something similar) and just do the best you can.

I am looking forward to sharing this adventure of life and all it's wackiness with you. Hopefully, you'll run across something you can use or atleast learn what I have: God always knows what we need. For me, it was a child who needed me just a little bit more. As I try to teach her, she daily teaches me more!

With my loves (thanks to Allyson Holliday for the photography!)

The Hair-not fur-Baby and the Tooter-Baby:

The Girl-Child: