In the beginning

When my daughter was first diagnosed with autism, I was devastated.  It took me about a month or so before I could even look at any books or websites on the subject.  I guess that I was in a state of denial.  In my mind, if I didn't acknowledge the fact that my daughter had been diagnosed with autism, it couldn't have happened.  After four or five weeks of having a major pity party and crying every day, I pulled myself up off the couch, dug in my heels and started researching. 

 I knew that we needed to start Applied Behavioral Analysis (ABA) Therapy and Speech Therapy as soon as possible.  ABA can be done in various settings.  We interviewed providers that would provide the therapy in a 8x8 room.  I just couldn't imagine sending my two year old to have therapy for three hours or more each day in a tiny little room.  I also interviewed some providers that were very clinical in the way they approached autism.  I wanted someone that actually thought of my daughter as a child who happened to have autism, not just an autistic child.  

When we did decide on our current ABA provider it was mainly due to the fact that the CEO of the company, Autism Learning Center, had a child with autism and could understand what we were going through.  He seemed to genuinely care about the success of the children in the program.  His kindness and sincerity played a huge role in our choice to go with his company.

The ABA program that my daughter is in focuses on doing therapy in the natural setting.  They come to the house or go with her to preschool five days a week for three hours each day.  They help work on whatever issues that we encounter in our daily lives.  Therapists have gone with us to get haircuts, to the grocery store, and to restaurants.  They help me to understand and implement techniques that speak to my daughter's specific issues.  When she has trouble waiting, they add waiting to the therapy goals.  I am continually amazed at the depth of the therapy treatment.  All of the therapists, the program coordinator and myself meet monthly at the "team meeting" to discuss what we are all seeing in the different settings and then we modify her treatment plan. 

As someone who was mortified at the thought of people coming in and out of my house five days a week,  I am finally adjusting to the ever present revolving door.  I have always been a pretty private person.  I always considered my house as my personal space.  I am kind of a homebody, so the thought of people being in my home every single day really bothered me.  For the first year or so, I would get up, shower and be dressed with my makeup on and my hair fixed by the time the therapists arrived.  That all changed when I was on bed rest with my son.  I couldn't get up and shower each morning due to the risk of having contractions.  I had to remind myself of the fact that these people are here to work with my daughter, not me.  They could care less what I look like each day, so why should I worry about my appearance. 
 Now, the therapists are lucky if I have brushed my teeth and hair by the time that they arrive in the mornings. 

 Priorities change.  My life continually has to adjust to this new path that it has taken.  As long as the kids are dressed and taken care of, I have done my job.  I do eventually get around to putting myself together.  I just don't have to be perfectly made up before people arrive to my house every day.   Hopefully I will one day have it all together again.  In the meantime, I will just keep plugging along in all of my unkempt glory.

Judge ye not...

Before I had kids, I would often see a child misbehaving in public and think to myself, "I would never let my child act like that.", "That kid is old enough to know better.", and "How could a parent let it get that bad?". 

That was all before I was a mother.

Since I have become a mother of a little girl with autism, I realize that I now have a totally different perspective.  When I see an older child screaming out or having a tantrum in a store, now I usually think, "I wonder if he/she is on the spectrum (the autism spectrum)".  I no longer have any negative feelings toward the parents or have any notions that I could certainly do a better job if I was in that situation.  Now, my initial feeling for them is sympathy, and I wonder if there is a bigger picture going on within their family situation. 

Until I was a mother dealing with autism, I never even thought about autism as a possibility.  I have no idea how I could have been so ignorant to the fact that so many children are now being diagnosed with the disorder.  I was a pediatric nurse for goodness sake!  I surely never thought that I would personally have to deal with it within my family. 

I guess, you never know what others are dealing with in their day to day lives.  Until you have been in the situation, you really can't understand the daily (and sometimes hourly) struggles.   Next time you see an unruly child out in public, I challenge you to look at the situation with compassion rather than judgement.  

Sleep (Yes, I would like some please)

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Lots of kids with autism have sleep issues.  From what I understand, a kid with autism's brain has a hard time shutting down long enough for them to get into REM sleep for any good length of time.

We have tried almost everything for our daughter.  Melatonin gets her to sleep, but won't keep her asleep through the night.  A noise machine my help to block out the noise in the rest of the house, but when the issue is that she wakes up in the middle of the night when the house is silent, it doesn't make much difference. The doctors try to help, but it's kind of a crap shoot for them too. 

We have tried prescription medication also.  Clonidine seemed to just make her a zombie, and it didn't help with her night waking.  The doctor suggested Risperidone, but with all of the side effects (some permanent), I just couldn't give it to her.  We finally decided to try Trazodone.  It seemed the least severe option.  It worked for a while, but recently she has started waking up around 4:30 or 5:00 many mornings.   It gets kind of old being woken up between 3:00 and 5:00 am four out of seven nights.

Our most recent attempt (we are grasping for straws here) is ordering a weighted blanket to see if that will help.  Hopefully she will be able to sleep until at least 6 am on a regular basis.  I will be sure to post the outcome whether it is successful or not. 

People who don't have kids with autism and sleep issues just don't get it.  They think that I am "drugging" my child for my own convenience.  That is most definitely not the case.  When she wakes up at night, she doesn't come  out of her room.  Sometimes, she doesn't even get out of bed.  She will just lay there and talk to herself.  She scripts (recites word for word) the tv shows that she has seen or the games that she has played on her Ipad.  She doesn't bother me.  I can just turn off her monitor and go back to sleep.  But the next day, she does not function well.  She will be irritable, she will be even less engaged than usual, and she does not progress in her therapy.  When she does sleep, she is a different child.  She is more interactive, her stims are decreased, and she can make progress during her therapy sessions.  

 I want to go on record.  I would never drug my child for convenience.  I hate the fact that I have to give her medicine every night to help her sleep.  I don't do these things because I am a lazy mom.  I do these things because I am trying to give my daughter every shot at succeeding in life.  Hopefully, one day she will be able to sleep on her own.  Until then, I will continue to make the hard decisions and do whatever it takes to help her be the best that she can be given the hand she has been dealt. 

My Little Beauty Queen

Lately, my little girl has turned into very girly girl.  She has started to want her fingernails and toenails painted, she loves to put on my lipstick, and the other day she asked for some eyeshadow and then she actually stood still for me to apply it.

For most mothers, all of this is no big deal.  But any mother of a child with autism will understand that this is HUGE!  A child with autism doesn't interact socially the same way as normally developing children.  It's kind of like they are in their own little world.  Sometimes they will let others in, but usually, everyone around them is just in the background until they need something from them.  Even then, it is difficult to understand what the need is because the communication can be so limited.

Being a stay at home mom of a child with autism can be exhausting.  Especially when you sometimes feel that no one else understands.  When I don't have the house clean or dinner on the table,  my husband probably thinks, "what does she do all day?".    What I spend most of the day doing is waiting.  Waiting for her to answer my questions.  Waiting for her to tell me what she wants to eat, then insisting that she "ask" for what she wants instead of just shouting "Chicken nuggets"  across the room.  Waiting for the tantrum she is having because her little brother got in her personal space to be over.  I do a lot of waiting.

I also wait to see what she will do next.  Things that normal moms take for granted, I cherish when they occur.  I love that she is wanting to be more like her mommy.  Every day is a new adventure.  Those of you with normal children, rejoice in the fact that they talk your ears off and want to play dress up by changing clothes twenty times in a day.  When they ask why, don't be frustrated that they ask it about every little thing.  Enjoy the fact that they want to know how their little world works.  My daughter has never asked why about anything.  I look forward to the day when she gets on my nerves because she is talking too much or asking too many questions.  I cherish what most people consider the little things in life, because those little things are pretty big things for us.

My Minivan Dream

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I am just going to come right out and admit it.  I love my minivan.  I never thought that I would be a minivan mama, but here I am enjoying every minute of it.

I got my minivan the day my son and I came home from the hospital.  After three months of bed rest and a pretty difficult pregnancy, my husband and I decided that I should get one to make life as comfortable as possible transitioning from one kid to two.  

Yeah, yeah, I know some of you are thinking, an SUV is just as easy and has just as much room as a minivan.  You are wrong.  My minivan is so much easier than my husband's SUV.   I never worry about packing too much.  The kids aren't whining over who is touching who.  It drives like a car, and I don't really care that I have turned into a cliche.  

I used to never think that I would drive something so stereotypical.  I was too hip to drive a minivan (people still use the word hip, right?).  But, I can say that at this point in my life, I wouldn't want to drive anything else.  I am sure that one of these days, after the kids are grown and gone, that I will love driving a cute little sports car or an SUV.  But right now, I am going for convenience.  I am at that point in my life where I don't give a rat's you know what about what other people think.  I am content to live my life comfortably whether that means driving in my minivan, going around all day in my yoga pants, or throwing my hair up in a ponytail every morning. 

As someone who used to be pretty concerned about my appearance, I have finally come to the realization that most people don't care what I look like or drive.  And the ones who do don't really matter.  

One of Those Days

Have you ever had one of those days where your kids are driving you absolutely crazy?  

You know, I am usually able to keep it together fairly well.  My four year old whines or screams for no known reason (she has autism), and I will give my level headed calm response of "use your words," or "calm down, it's ok".  Or my 11 month old is really clingy and fussy, and I will rock him or sing to him or play peek a boo just to keep him happy.  Pretty much, I do the normal "good mom" things and it's all good.  But sometimes there are those days where I want to pull my hair out and run down the street screaming.  Those days when if feel like if I hear one more whiny little voice I am going to lose my mind.  I don't of course, but I feel like it.  It's kinda hard to admit that I have these feelings, but I am sure there are other moms out there that feel the same way.  

Sometimes when things get to be too much, I go into the bathroom just to have a mommy timeout.  Of course that doesn't stop my kids, or my husband for that matter, from talking (or whining) at me through the door.  But at least I get a couple of minutes to take a few deep breaths and attempt to get re-centered (that's what they used to call it when I went to yoga class anyway).  Once in a blue moon, I wait for the kids to go to bed, and I go to the store all by myself.  What a treat, right.  I don't care if it is the department store or the grocery store, just being able to spend a little time kid and husband free is refreshing.  As a mom, I need to spend some time all by myself every once in a while.  It makes me a better mom.  It makes me a better wife too.  I am able to appreciate my kids and husband more and focus on how I can be my best for them. 

 

When my daughter was younger, I joined some Mommy groups.  I wanted to get to know other moms who had kids my age, and I wanted my daughter to have someone to play with.  All too quickly I realized that these types of groups were not for me.  I felt like I didn't measure up to the supermoms whose kids were perfectly behaved, who had a perfect dinner prepared every night for there wonderful husbands, and  who would show up at any given event with cookies or cupcakes that they had just "whipped up" that morning on a whim.  It also didn't help when my daughter wasn't well behaved, and didn't reach milestones like the rest of the kids.  The other moms just looked at me like I was doing something wrong.  I never felt supported or encouraged.  I just felt judged.  I look to this blog as somewhere that moms can vent their true feelings without judgement.  I want to support other non perfect moms out there. 

I think that it is ok for we women to admit that we don't necessarily have it all together.  I think that we should reach out to each other and let each other know that you are not alone in feeling like you are going to lose it sometimes.  Maybe if we moms were more honest in how we really feel, we wouldn't feel so alone in the day to day grind of life. 

Keeping it Real

Ok.  I am going to be real here.  No pretense, no life is all sunshine and roses BS.  I am a real mom with real issues, real worries, and real daily drama.  My life is not reality tv worthy, nor is it a thrill a minute.  Hopefully by sharing my daily adventures, others will know that they are not alone.  Staying at home is not for the faint of heart.  This is not a sit around and eat bon bons type of gig. 

I have both worked full time and stayed at home and they are both challenging in different ways.  When working, I had the stress of dealing with the work issues and maintaining the household.  Now, as a stay at home mom, I feel like I can never catch up.  There is always something to clean up, put away, or rearrange.  Not to mention dealing with the revolving door of the multiple therapists in and out of the house each day.  Not that I don't appreciate all that they do with my daughter, they are wonderful and are making great progress.  But some days, I would just like to veg out in my PJ's with a good movie and a carton of ice cream without worrying about looking like the ultimate slacker mom to all of these young perky girls who come into my home each day.

When I had my daughter, I tried desperately to be Supermom.  I wanted to do everything the right way, to be the ideal wife and mother.  After trying and failing many times to be who I thought the world (and myself) thought I should be, I am now resigned to the fact that I am not perfect and that is perfectly fine.  We all have faults as women and mothers, but that is what makes us real.  I am not living in Stepford.  I do not have dinner on the table every night.  My house is not immaculate.  Some days I am just happy that we have all survived another day without making a trip to the hospital.  I used to always look toward the next thing coming up.  But that only meant that I was continually waiting for my happiness to come along. Sometimes we just have to be happy where we are.  If we keep waiting for tomorrow, we will never enjoy today. 

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