why can’t poop just put itself in the toilet?

toilet-bowlEmma the Dilemma

There are times when all decorum and things that your mother taught you to say or not say go right out the window. Common sense leaves and all little children’s ears that hear everything are quickly forgotten in that brief second of indiscretion.

“ARE YOU SHITTING ME!?!?”

I keep my swearing silent. I do not usually take to exclaiming loudly for the world to hear. I had just walked into Emma’s room to find her own excrement spread all over the walls, bed, commode, her hands, shirt, legs, and the worst in her mouth. Quite literally folks, she was shitting me.

Emma was the most beautiful baby girl. She was, and still is, my heart’s delight when I brought her home. As you will hear me say over and over in this book I can look back now and see things so clearly. How did I not realize? Experience is a harsh teacher. We are harsh on ourselves for not seeing things that now seem so black and white. I need to remember that I did not have the experience yet so many years ago. I was a young 25 year old mother of two still thinking life was going exactly as planned.

Road bumps in life are fantastic, they make your stomach drop out from under you and after that sensation has left it leaves you wondering how much damage has been done by hitting it. They let you know that you are really living and I was going to be hitting my road bump 19 months after she was born.

when abandonment is not a bad way to go

I have been reading with great interest and joy the account of the woman who “kicked her girls to the curb” for fighting in the car.  She drove around the block but when she got back to pick them up, the 12 year old had already started walking home and the 10 year old was picked up by a strange woman and the cops were called. Things went downhill from there for the mother and she is now being prosecuted.

Let us discuss “kicked to the curb.” Usually one is kicked to the curb because if they stay on the sidewalk one more second in a relationship chances are stitches will be required.  Chances are that these two lovely pre-teen girls had walked on their mother’s last nerve.  All these laws against distracted driving and has anyone ever once considered that there is nothing more distracting than the whining, screeching, screaming voices of two girls fighting?

I have kicked one of my kids to the curb while driving before.

Every person is given the ‘fight or flight’ mechanism. My son Ben’s mechanism seems to always be stuck on fight.  We were just driving along the road when all of a sudden Ben attacks me.  Ben does not just push, oh no, he is like having a wolverine/badger contained in a small area. He can attack every where at once.  I don’t care who you are, being hurt turns on my fight or flight mechanism.  Luckily for Ben I choose flight; or rather I choose flight for him.  I pulled over, jumped out of my seat, opened the van’s sliding door, pulled Ben out then drove away.  Now granted, I did not drive around the block, just drove up the street a couple of blocks, but the look of complete and utter shock on Ben’s face was worth every second. He did not attack me again on that particular outing.

I say mothers unite, kick your kids to the curb every time they start arguing or ignoring you in the car to the point of exasparation.  Let them know that the vehicle is YOURS and therefore becomes its own entity under its own constitutional laws, the first being you arkids-walkinge law and the second ejection from the vehicle. God gave them two legs for a reason and I see no problem letting those kids know exactly how those legs work.

what do you mean she has a period!?!?

Adventures in Puberty

On Mother’s Day most of Mark’s family was at our home because his brother was adopting a baby and the birth mother was in town to finalize the adoption. She was also at our home that day. It was the absolute pinnacle of a spring day. There was a nice breeze, the mood was obviously a joyous one for the family with the addition of a new baby, and everyone was relaxing enjoying each other’s company when suddenly Emma appears on the porch without any pants on.

There was no guessing that Emma was going through puberty.

As I ran across the lawn (yes gentle reader, a swear word was used) to get Emma inside I left behind a stunned group of people not exactly sure what to say. Mark began by saying “Emma is going through puberty.” Which got the reply “Yeah, we know.” With out blinking an eye Mark replied “She doesn’t.”

He has a very good description for Emma; we just tell people she is “unconsciously inconsiderate.”

I have skipped ahead, actually stopped in mid chapter, to write this chapter at this very moment. Not because I feel it is more important than anything else but quite simply because at this very moment I have a two beds and a chair that need some serious cleaning, because she has been up since 3 am and because if I don’t I will scream for all the neighbors to hear.

When Emma was first diagnosed she was less than 2 years old. One does not consider puberty at 2 years old, in fact one does not consider puberty until it is knocking at your door and no matter how many times you yell no one’s home it still keeps knocking.

She was 10 years old when she started developing. The new boobies became a source of great amazement too. She can make cleavage out of nothing at all!! We debated how far to go with teaching her not to touch her body when we realized there was nothing sexual about her fascination, it was just something new that was growing on her body. Who would not find that fascinating?! Once the fascination ended so did the cleavage making.

Her first period started when she was 10 ½ years old. I want to state right now that it is not fair for any girl with disabilities to have to have menstrual cycles as well. Not only did Emma have a period she had cramps, clots and very heavy bleeding. Where was the justice? I felt genuine anger over this.

Emma does not do things that make no sense or make her life hard. Unfortunately a period did both. I walked by her room one day to see maxi pads on her hands as she waved at herself in the mirror. I am fairly certain that her hands were not the part of her body that needed that extra absorbent protection that day. We had to, very patiently, keep continuously replacing maxi pads, keep her clean and clean up behind her all the while explaining to her that they need to stay on. One does not appreciate the true power of a maxi pad when used correctly until they begin to find them all over the house. There is no magic in making her wear them, it is only explaining and replacing over and over and over again. I don’t think they have made a maxi pad yet that can stay on a very active autistic girl. At least not that we can find. We considered a partial hysterectomy, contacted her pediatrician to see what would have to be done only to find out we would need a court order for any doctor to consider it given her age. When she gets older we will consider the option again.

She is moody like a teenager, stays in her room, kicks us out, glares at us, makes us laugh, snacks like a crazy woman just before she starts and once she starts is taking things in stride. Her periods have gotten lighter since they started but still give us a run for our money every single time.

The next biggest problem, well actually the biggest, is convincing her that clothes are an important part of her daily routine. We had our friends over that have three boys aged 15, 13, and 6 when Emma made her grand entrance without a stitch of clothing. It was like watching the Emperor’s New Clothes playing out right in front of our eyes. Not only in front of our eyes but some very big eyes of three shocked boys.

The next time I was getting her clothes for after her bath when I heard the door bell ring and found our neighbor on the porch telling me Emma was on the trampoline jumping without any clothes on. Can one go pale and red and the same time? I did. This has also been a very slow, memory making, process with constant reminding and lots of patience. I am happy to report that except when she gets out of the bath tub Emma does not walk around in the nude like our own little personal Greek statue.

If there is one thing I would say it takes to get through this period of time (no pun intended) is to have a sense of humor and remember these are just moments. Measure your life in moments and know that it is not going to last forever even though I felt like they were/are. Just be sure to have plenty of stain stick and resolve on hand (and not just the carpet cleaner.) Now if you will excuse me I have two beds and a chair still needing my much needed attention


being right is not always the best thing

Relief.

There was no other way to describe my feelings as the neurologist gave me the diagnosis of Autism for my son. As I was thinking about this I was brought back to his voice when I heard:

“Your daughter is Autistic as well.”

Stunned.

I cannot tell you what the weather was like that morning as we were driving to Primary Children’s Hospital from Ogden but I can tell you we got a parking spot by the front doors and I was glad, having three kids 3 and under makes a person grateful for the oddest things. As we walked into Dr. Filloux’s office I was struck by the bareness of it; this was a leading neurologist that we had waited weeks to see and I assumed his office would be so much more. We were taken back to a little room that seemed so much smaller once we were all settled in with Keaton on my lap.

Emma immediately went over and sat in a corner facing the wall. I once saw a movie that had a storm blowing with hurricane force yet in the middle of this storm stood a woman in a beautiful dress with everything calm around her: that is Emma.  Even then she seemed to be able to shut out all commotion around her….  Keaton on the other hand was in a complete sweat, in any situation he would become a sopping mess.

Dr. Filloux asked us a bunch of questions regarding Keaton about routine, speaking, sensory, and diet. He checked Keaton’s reflexes and all other body functions that all doctors seem to need to do regardless of the situation.  All the while I noticed the Dr. Filloux would keep looking behind him at Emma asking intermittent questions about her as well. I thought absolutely nothing about it assuming he was just using as a comparison to help diagnose Keaton.

When he was done with his examination and explained to us his diagnosis and reasoning. I was very appreciative that he did it matter of fact.  There was no condolences, as there should not be, I am certain he has sat in the very same office giving parent’s much worse diagnosis than ours.

When he mentioned Emma there was compassion in his eyes but also he watched me very closely to see my reaction.   I looked right back at him. In my mind were many thoughts running at once but no words were coming out.  What was there to say when I did not know what I was going up against?

I returned to that bare office in 2000 with my youngest son at the time Benjamin.  I sat there once again as Dr. Filloux did his examination, this time with a student doing their residency, and waited once again for a diagnosis.  I was hoping with all hope that Benjamin did not talk because he was raised in an environment where his siblings did not talk. I hoped that his jumping and hand flapping were just because he had seen his siblings do this.

I told this to Dr. Filloux, I was almost pleading with him. This time there was genuine compassion and feeling with Dr. Filloux. He looked around the room at Keaton and Emma and my ex-husband said he was sorry, so sorry.  He said that deep inside he knew that I already knew that is was so much more than enviornment. Ben had something called Static Encephalopathy.

My tears did not spill over but my eyes did well up. I was under extreme pressure already to prove that my kids were progressing as the result of a very bitter divorce and now here was yet another one added to the load. In the next breath Dr. Filloux gave me the confidence that I had been lacking up to that point when he said “Your children have progressed so much, what ever you are doing you keep doing it and you are to be commended.”

He looked right at me when he said this.  He did not know at the time that it was what I needed to hear. He did not know at that time the impact his words had.  I walked out of the hospital that day with one more child that would have life long disabilities, and I walked out with my head held high.

We had moved down to Utah August of 1998. I had 3 young children aged 2, 1, and 1 month old. We were meeting my husband who had been living here working already. I had known Keaton was developing differently then the other children his age. I had noticed he was not talking the way he should, did not like change in structure, routine, schedule. Any new person in our home brought on tantrums that lasted hours. I felt within me that something was not right. I took him to our primary care doctor in Washington but was told not to worry he was just a late bloomer. I was told by people I smothered him, spoiled him, given into his every need without forcing him to talk or come out of his shell.

The first thing I did after getting settled into our duplex was to find a pediatrician. I made the appointment, went in and described Keaton expecting the same reaction I had been getting for over a year now.  She was different, she gave me hope that there was something going on and I needed to make an appointment with a neurologist. Finally answers would be forthcoming. Finally my self doubt as a mother would hopefully be alleviated. I did get that satisfaction however short lived.

I was so smug going home. I had been right!!! I could not dial the numbers to my family fast enough to tell them I had been right about Keaton. Of course Emma was a surprise, but that did not matter……I WAS RIGHT!!!!! As my family started asking more questions than I had answers for, reality started making its slow but definite entrance into my life until finally I was thinking  “I was RIGHT!?!?!?!?!?!” That was the first of many, many reality slaps in the face I would be receiving.

As I hung up the phone I leaned on the kitchen counter looking at Keaton and Emma. They were sitting right next to each other watching Fantasia and did not look at each other once. Then I started to really look at them.  They both were completely encapsulated in their own bubble as real as a wall that made it so they could not see one another. Keaton needed me. Loved me, showed me affection and rarely wanted anyone else but me. Emma on the other hand, well she did not care one bit if I was around or gone. I was her source for food and drink other than that I was unneeded.

I began to really think about what was said in the neurologist’s office …”we don’t know exactly what causes this…….this is a life long disability…..don’t expect your son to grow past the mental level of a 3 year old……..your daughter will always be in her own world.”

That is when it really hit me.

This was not a quick fix, let’s go to the doctor and get a prescription, this was our life now. Right then I realized that I had expectations for my children that I did not realize. I took for granted that they would just follow the same path as me: friends, play date, school, sports, dances, girlfriends/boyfriends, college, marriage, children. I started to cry. I was mourning not my children, they were real, beautiful and right in front of me; I was mourning the life I thought they would have. I was mourning what I thought at the time was their happiness. I was mourning the children I expected to raise.

As I write my journey I would like to take it one child at a time, for they are all so unique in the disabilities, personalities and responses to treatment for lack of a better term. I ran track in school and always have pictured my life as a race, even when I am driving. There are lanes you stay in, assigned to not be crossed. I felt like I was starting a race. I was no different than any other parent, just in parallel lanes. We were both running the same race.

I had read a comic strip once that showed a woman in the hospital holding a newborn baby with her husband standing next to her saying “keep pushing the instruction manual is still coming!” I felt like in was waiting for one to appear. This is not an instruction manual; this is experience, trials, errors, tears, and laughter that I call my life.

Fear of the unknown is crippling, knowing is powerful. I was ready to run my race.



My feelings on the matter.

My feelings on the matter

My sister once gave me a pin that said “Be the type of woman that when your feet hit the floor in the morning the devil says, ‘Oh crap she’s up!’” It made me laugh, and I am sure it is something to aspire to, but most of the time I feel like I am the type of woman that when I hit the floor in the morning the devil says, “I didn’t know she even went to sleep!” I have mornings when I hear the doors start to open and close to the kid’s bedrooms that I just want the day to not start again. I don’t want the monotony, the pleas for help, food, clean clothing and the all-encompassing question, “What are we going to do today?” I have tried to go on strike, retire, turn the reins over to the kids (which have never been taken, surprisingly enough), but alas the buck truly does stop with me.

I started working nights in 1996 when Keaton was 2 months old and continued until 1998, just about three years and two more babies in between. When I quit, I was certain I was going to finally be able to catch up on some sleep. To put it quite simply, the sleeping fates were not in my favor.  In a 24-hour period, there were only three hours that the kids were all asleep at the same time. I was up and down constantly all night long, nursing, shushing, and trying to get three very energetic children back to sleep.  My days were filled with speech therapists, occupational therapists, pre-school, field trips, doctor’s appointments, ear surgeries, oral surgeries and to add some excitement, I eventually added two more beautiful little girls.  To put it mildly, I was getting a “butt whoopin’.”

I once saw a movie trailer with a line that said “HE’S TRYING TO KILL YOU!” I thought of that line often, only in my head it read, “THEY ARE TRYING TO KILL ME!!!” There were times when I understood why animals in the wild sometimes eat their young–they just wanted to sleep.  I look back on this time and wonder how I ever survived it. When you are in the moment, you sometimes don’t realize the toll it is taking.  I truly believe that the only way I survived was that I was being watched over and given everything I needed by a very diligent, wise and kind Heavenly Father.  I was able to make it on three hours of sleep, I was able to “run and not grow weary.” This does not mean I did not stumble or crumble under the constant—the mind numbingly constant—pressure of raising children, this just means I was given what I needed to make it.  It also means that I know one can only run like this for so long before breaking.

I had an “AhHa!” moment one afternoon when I was sitting around listening to a group of mothers talk about their life and children and all that they are doing and accomplishing. Sitting there listening to the group, but not joining in the conversation, I realized I had forgotten how to visit, share, or be social. I had been so wrapped up in my own little world (which ironically enough I was trying to teach my children to not be in), that I had literally shut out everything and everyone else.  There had been times over the years when I longed, truly longed, for someone to talk to. I have an amazingly supportive husband who listens to me, but it was something more. I needed to be Regina, not Mark’s wife and Keaton, Emma, Benny, Rosy, Ella’s mom. I had lost Regina.

Finding myself again started rather slowly for me. I took time to start running, then biking, then going hiking for a few hours on Saturdays. Still, I was doing all of this alone.  Finally, a woman named Nancy came up to me and asked if I wanted to start running together.  It was a simple request, but I found myself very nervous about answering and told her I would have to look at my schedule. Now all of you mothers reading this right now, who have autistic children, know very well I knew exactly what my schedule was every day.  I went home and truly started thinking about it. I could not think of a good reason to tell her “no” and I am so glad that I said “yes.”  I had forgotten how nice it is to talk to someone about mundane things.  At first, I would actually get a sore throat from talking to her because I was not used to talking so much at one time.  This running lead to a girl’s night out with some other ladies, and eventually, I caught myself actually visiting in church with people!

How silly this all sounds. These are not life-changing moments or trips to exotic lands, but this simple act of allowing myself to enjoy conversing with others brought me back to an aspect of my life that had withered away.  I still have a hard time initiating conversations, not because I don’t enjoy the company. I think I may always be a little bit shy about opening up.  Last year, for the first time in 12 years, I went to my parent’s house by myself for 3 days! I was not quite sure what to do with myself, but I relished the indecision. This year, I am going to attempt a 5-day getaway to a lakeside cabin with a friend. I may come back a party mama!! Mainly, I know I will come back a better mother because I took time to replenish me.

I have discovered at least one other source of stress relief. For some odd reason, swearing helps me immensely. When I feel things boiling inside me, cursing has been a quick and effective release valve. I don’t want anyone to think that I became a sailor overnight. I like to believe that swearing vocabulary is very harmless on the scale of swear words—if such a scale exists. I once reconsidered the wisdom of swearing when I overheard Benny when the DVD stopped working one day when he was watching movies. This event got an “Oh sheet” out of him.  I thought it was funny. I don’t think many other people would think it is funny. It figures that Benny would stop using movie lines just long enough to steal one of my swear words so I would not be able to justify using it any longer.

Another time, I was trying to unzip Emma’s dress when the zipper broke.  Emma was standing there with both fingers in her ears looking down at her zipper when she said “Dammit!” I would like to remind my readers that Emma does not talk. I was so stunned, I called my husband to tell him that had found my calling in life: I can teach autistic children to swear! I believe Heavenly Father has a sense of humor. He knew the best way to teach me a lesson about swearing. I guess He knew that if my kids swore (especially the two that speak only in movie dialog, or not at all), I would seriously reconsider the use of my newfound swearing skills.  I may not use curse words out loud as much as I used to, but believe me when I say that I regularly scream swear words in my head. This talent comes in particularly handy when my children get lost, and unfortunately, this happens often.

As I have been considering some of my bad days, I have attempted to think of the moment or event that has stuck with me with such clarity that it qualifies as the most dreadful of “moments.” I can think of only one, because it even still brings the emotions back. I was renting a little lake cabin on Diamond Lake in Washington State during the period of time that I was going through a divorce.  The kids and I loved living there. It was, to quote Dickens, “The best of times and the worst of Times.” There was not a bathtub in this little cabin, so I would bathe the kids in the kitchen sink and decided to give Ben a haircut on this particular day.  In the process of cutting Ben’s hair I also nicked his ear.  The ear, I discovered, has a surprising capacity to bleed……a lot.

Naturally, Ben started screaming, which in turn made Emma start pounding her head on the floor, causing a bloody nose. The sudden change in emotional atmosphere pushed Keaton over the edge and brought on a screaming tantrum. I stood there, scissors in hand, knowing I had unwittingly initiated the brouhaha.  I stood there, looking between bleeding children and trying to decide which one I should tend to first. Ben won. My guilt forced the decision on that one.  After many tears (my own included) and much blood, we were able to bring peace back into out little home—that is until later that night.  I still call this event “The Big Flu of 2000.” All four of us got completely slammed. One of the interesting quirks of raising autistic children is that they are not usually able to let you know when they are going to throw up. I eventually learned to be able to read the signs. If Keaton started walking in circles, it was coming and I would follow him with a bowl. Emma simply throws up and Ben does too. This would be fine, except during this particular event, I was compelled, against my will, to join the foray of vomit.

By the end, the four of us had contaminated high chairs, towels, bowls, bedspreads, and throw rugs, all of which I simply threw out the front door because I was too sick to clean them.  Because it was still freezing outside, and because he had not heard from us in a couple of days, my Dad came over to check on us. As rounded the corner to our front door, he was confronted by a disconcerting sight: Most of the contents to our little cabin were cast out into the snow—all in one frozen-vomit-encrusted pile of wretchedness. I wonder if he ever fully recovered from the shock of it.

When the kids were first diagnosed, I believed I was up for the fight. As with any race or endeavor, the start is always the easiest. You are fresh, naïve, and certain that no one can go at it as long or as hard as you can. What I failed to realize in the beginning, was that this race was going to become my LIFE. In races, especially longs one, there are pit stops to refresh and nourish your tired body. It is critical to take the pit stops if you want to finish the race. For a while, I would not allow myself any pit stops, and that was a critical mistake. If I could share one message with mothers of autistic or disabled children, (in fact, with mothers and fathers of children in general), it would be this: the kids will not fail if you take time off, the world will not stop turning, there will not be a day without night, and no, your husband will still not clean the house like you like it done no matter how many times you have explained it.

I have had, and will continue to have, moments of utter despair. Every day I deal with the possibility of momentary failure, or with the monotony of being in a rut that never seems to end.  My husband has held me in his arms when I have sobbed my heart out because one of the children have regressed for no apparent reason, or seemed to have just hit a plateau. I have walked calmly into my room and shut the door only to scream as loud as I can.

I have many days when I have gotten angry at my situation. I have thrown things at the TV after watching yet another report of a miracle cure, knowing that phone calls, always well-intentioned, will be forthcoming, asking if I have tried the latest sure-fire treatment. I have felt so alone that I believed no one could possibly understand me. I know how much it hurts to hurt. Raising autistic kids is a very literal battle of blood, sweat and tears.

On different occasions, short passages from hymns have had an uncanny ability to restore me to a sense of peace. Here are some of my favorites:

“He answers privately, reaches my reaching.”

Where Can I turn for Peace, text by Emma Lou Thayne

“When disappointment, grief, and fear are gone,

Sorrow forgot, love’s purest joys restored.

When change and tears are past,

All safe and blessed we shall meet at last.”

Be Still, My Soul, text by Katharina von Schlegel

“When through fiery trials thy pathway shall lie,

My grace all-sufficient, shall be thy supply.

The flame shall not hurt thee; I only design

Thy dross to consume and thy gold to refine.”

How Firm a Foundation, text attributed to Robert Keen

And on my very worst days, when even a hymn won’t cut it, I remember this: “Trying is the first step toward failure.” –Homer Simpson.

Above all, I have hope. Without hope there is doubt, fear and despair. With hope there is happiness, joy and the faith that better things are coming because honey, sometimes they cannot get worse.

the daring naked rescue of a hamster named jerry

my daughter wanted a hamster for her 7th birthday. a harmless gift, a harmless animal, a harmless endeavor. very doable i felt.  within 20 minutes of getting the hamster home it escaped it’s exercise ball. we found it after moving the piano and caught it because a picture frame fell on top of it trapping it. we considered ourselves very lucky. within the next 10 minutes the hamster was hanging upside down in the  exercise ball with it’s leg stuck in one of the little slits. obviously we needed to get the hamster in it’s cage immediately.

to say rosy loved this hamster would be an understatement. she carried the cage downstairs the next morning and hopped in the bathtub with her sister. i ran upstairs to grab a quick shower before taking the masses to school…….enter the two cats into our little tale.

while in the shower i hear a loud crash, benny laughing,  rosy hysterical and ella screaming. evidently rosy had seen her hamster run by followed closely by Yeti, cat number one. i ran downstairs completely naked to join in the race for the cure to save the hamster. when i got there what i saw was Yeti sitting calmly with the obviously dead hamster hanging from his mouth and rosy screaming “HE’S DEAD HE’S DEAD”  i throw a bath towel over Yeti and toss him and his prey outside with the bath towel. ……still naked.

after calming down rosy and explaining that the pet store will not give us a free hamster since we let the cat eat our new one i went to go finish my shower. as i was walking past the porch i see a now very alive hamster running for it’s life around our porch…..without thinking i stepped out on the porch to save itrandom-020…….still naked.

long story short, the hamster is alive, the neighborhood is still intact and the only person who suffered PTSD is the hamster after seeing a gigantic naked woman chasing him along with a cat.

Hello world!

no one told me when my kids were diagnosed with autism and static encephalopathy that they would eat their own poop. no one told me that your on e-coli will not hurt you. no one told me that even after puberty they would run around naked. no one told me that when they get angry they get freaky strong, so much so that is look for green skin and the ripping of clothes. no one told me that when i had “nomal developing” kids they would not ever stop talking and also be certain they are always right at age 7 and 4. no one told me that raising myself would be so damn irritating!!!! well now i am telling you!