Q&A with Curly's Mommy

People who know I have an autistic child often ask me questions about autism and about parenting a child with autism.  I also get ALOT of questions while out in public with my daughter.  I thought I would share my most asked questions and their answers with you all today.

1.  When did I notice that Abigail had autism?

      Abigail was born with delays, I believe.  She never met any developmental milestone on time.  As a newborn, she rarely looked at us, would roll her eyes to avoid looking in our direction, and would scream if she was made to touch things that were upsetting to her.  When she was around 9 months old, she did not look me in the eye, she would choke on pureed foods, she did not attempt to hold a cup or bottle, she did not play with toys, she would line up items in "her" order on the floor and would get very upset if they were moved, and she did not respond to her name.  At fifteen months old, she went silent.  She only had one or two words up to that point and then one day they were gone.  The only noise that came from her mouth were cries.  I can now look back at pictures and see her autism as early as 8 or 9 months old.  It became very evident after her first birthday.  Because of her very evident delays, she was diagnosed with autism at 20 months old.

2.  Do I believe vaccines cause autism?

     No!  Like I said earlier, I believe Abigail was born with autism.  She showed slow development before she ever had a vaccine.  I do believe that our vaccines should be greener and there should be a slower schedule for these vaccines.  I believe there is no need for any child, any age to have four different vaccines in one day.  I believe your pediatricians should offer you a delayed vaccination schedule where your child only gets one to two vaccines at a time.  If your physician refuses this, get a pediatrician who will go along with this request.

3.  Does Early Intervention Work?

     YES!  Abigail started receiving therapy 5 days a week at age 18 months.  She received this therapy until she reached age 3.  Her developmental therapist got her to respond to her name, play with toys appropriately, and sit and  listen to a complete book.  Thank you, Zulmie.   Her occupational therapist got her to pick up a spoon and put it in her mouth...Thank you, Mary!  Her speech therapists got her to sit at a table and look through a book and to make choices...Thank you, LaNae.  At age three, she went to a pre-k classroom for autistic children.  They got her to feed herself, to sit for a group circle activity, to sit on the potty, and to learn how to swing on the swing set.  Early intervention does work.  You can see a difference between the kids that had it and the kids that didn't. 

4.  Will Abigail ever talk?

     I don't know.  I hope everyday that she will.  The statistics show that most kids who will talk have at least one word by age 5.  Kids who will get a good vocabulary of words tend to have multiple words by age 8.  It is rare for a child over 8 to become verbal.  It breaks my heart to think that Abigail may not get words.  But she does communicate.  She uses gestures and pictures to express what she needs or wants.  And I know that even if she never calls out for me, that she loves me.  She tells me this everyday.

5.  Why is Abigail still wearing diapers?

     Abigail will be 5 this November.  She has severe autism.  Most kids with autism do not become potty-trained until they are 6 or 7.  She will sit on a potty and occasionally go to the bathroom but that is as far as we are with potty training.  Kids with autism have a very difficult time with activities of daily living.  Potty training is a hard concept for these kids.  She will get there and we have time. 

6.  Why does Abigail eat pureed foods?

      She has sensory integration disorder.  She does not like the feel of chunky foods, table foods, or cut up soft foods in her mouth.  She started gagging on her foods at 6 months old.  At a year, she was just progressing to stage 3 baby food.  She has been there ever since.  She will not eat finger foods or any table foods.  Over the last six months, she has accepted some soft pastas, cheerios, and pieces of cookies in her mouth.  She does not pick up a food and feed it to herself.  Everything she eats has to come off of a spoon.  She only drinks out of a sippy cup.  She can not suck a straw.  She can drink from an open cup but can be very messy doing so.  Sensory integration disorder also makes her sensitive to smells (like strong perfumes or cigarette smoking smells), windy days, snow, rain, and bright sunlight.  She also does not like to put her hands in play dough or any sticky substance.  When given chunky foods, she will throw up.  When it is too windy out, she will have a meltdown and scream and cry.  We are working on increasing her foods but it is a long journey and we are no where near the end.

7.  How do you deal with raising a child with autism?

    I have to get up and do my job.  My job is to be the best mommy I can be to three amazing little girls.  I fail miserably on most days.  But I keep trying.  There are days that I want to lay in bed and not have to deal with the sensory meltdowns or the sleepless nights or seeing the distance in my child's eyes.  There are days that Abigail is so into her autism that no one can get to her.  There are days that I listen to my child scream all day and all night.  These are the days that I cringe at my life.  These are the days I want to have a little pity party for myself.  These are the days that I wish those who think we have it easy could come in and see just how "easy" this really is. 

But there are great days too.  The days where Abigail smiles and laughs and melts my heart.  The days when she had a great day at school.  The days when she plays along with her sisters.  The days when I can take her out in public and not get the stares and the condescending remarks.  The days when autism is not our focus.  The days when we are just a family of five raising our girls and trying to provide a good life for them.  The days when I don't worry about her future.  The days when I live day to day, moment to moment.  Over Abigail's life, there have been a lot of really great moments and this is what keeps me going.  Raising a special needs child is hard.  There is a lot of stress involved.  Your household has a lot of chaos.  But in the end, you remember the good memories, the days that your face hurt from smiling, the days when you got good eye contact and a hug.  The days when you know the autism did not take away the love between a child and a parent.