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.