Ruby’s Story

Hello! Thank you for joining me!  My name is Amanda and I am excited to start writing about the experiences I have had on my journey with my children.  Each of us has a unique experience, and I hope that by sharing mine I can give some ideas to other families on how to help your children develop intentionally.

A little about me.  I am a mother of three wonderful children who keep things lively and fun at my house.  My oldest daughter is 4, going on 5, and I have two sons ages 3 and 1.  So you can imagine that there is always something going on, never a dull moment!  I am writing this blog to talk about my journey with my oldest.  She was diagnosed with autism and sensory integration disorder last October. There are so many parents out there that have concerns about their child’s development.  My child isn’t talking as much as other children, should I be worried?  My child doesn’t like to play with others, what should I do?  Other people are telling me that there is something different about my child but they seem perfect to me, should I be worried?  It can be hard to distinguish what is your child’s personality and what are some things that can be signs of a deeper issue that needs to be addressed.  So I am going to write down my experience with my daughter and give some tips I have learned along the way to help parents navigate this whole process.  I do want to stress that I am not a speech therapist, occupational therapist, or other licensed professional. I am sharing my experiences and things that I have learned that work well for my daughter.

Ruby is our first child and was such a joy to have.  She loved being around people, especially teenage boys (uh ho!) and her grandparents.  She was developing pretty typically for her age.  She loved to swing, go swimming, play with toys, and sesame street (especially Elmo.  Elmo was one of her first words).  She was able to count to 10, and had about 50 words.  About age 2 I kept waiting for her “language explosion”, which was not happening.  Ruby was pretty happy most of the time, but was often in her own world.  She would only respond sometimes when I would call her name.   People would say, oh she is just ignoring you.  Granted she was playing with toys, but she would not show any signs that she had heard me at all and this would happen frequently.  She was also not able to follow 1-step directs consistently.  She could sometimes, especially if her grandpa would say them, but with me, usually not.  I was starting to get a little worried by her 2 year appointment.  I remember sitting in her pediatricians office and voicing some of my concerns.  The PA (whom I love by the way) said “I think she’s fine”.  So, I stopped worrying about it for a little while.  She did engage with other kids, she loved to do typical activities for her age, and she was perfect.

Between age 2 and 2 1/2 instead of an explosion of language we saw her using less words.  Instead of gaining more skills, like being able to follow directions, balancing one one foot, we saw her get a little more all over the place.  It was hard for her to stay with one thing for very long.  She liked to run around a lot when she was excited.  She started engaging less with peers when they would use language.  Even when someone would come up to her at the playground and say hi, she would stare at them for a second and then just walk away.  When she got closer to 2 1/2 we had someone at church come talk to us and say that Ruby was different than the other kids, that she might had autism.  This was a shocking thing to hear because my PA had said that she was fine!  Some things that the person at church noticed was that Ruby could not sit like the other children, could not follow directs, and could not participate in group activities as the other children did.  But she is only 2, are children supposed to be able to do that?!

This was the first time that I really started to consider that there might be something different about Ruby’s development.  My husband and I had a long heart to heart about it as we had noticed some things with her development, but just hoped that she would just grow out of it and catch up.  Yes, every parent’s dream!  The woman from church suggested that we look into the early intervention program provided by the state to get Ruby evaluated.

Let me pause for one moment and talk about the fears of the parents.  Parental fears are real and can put a pause on getting your child the help they need.  My biggest fear was not that I might have to do a lot of work with Ruby when she is young.  I can do therapies all day long, no question.  My fear was rooted in the thought about her future.  I did not want her to have a different trajectory for her development because I did not want her future to be limited.  I wanted her to have the option to go to college, live on her own, to follow her passions, to have meaningful relationships, to perhaps get married and have a family of her own.  The though of autism scared me because I thought that these possibilities would not be possible.   So, I swallowed my fears and made an appointment to have her evaluated.  What is worse than these fears is not knowing if they are founded.  If there really was something different about her development I needed to know.  And let’s say there wasn’t something like autism, she was just behind.  Getting extra support to help her catch up is definitely worth while.

Even at this point, Ruby was still in the gray area.  The next week at church the same woman came up to me and said, “I might have jumped the gun a little bit with Ruby.  I’m not sure if there is something going on, she did very well this week.”  I continued to ask others around me to see what they thought of her development because you know, mom goggles.  Apparently my parents had some concerns as well.  They said that sometimes they thought she might have autism and other times not.  Ruby did not have any of the large warning signs like banging her head, hand flapping, isolating herself, huge tantrums, etc.  I was in a PhD program, so she had babysitting and her babysitter (who was a mom of 4) said she thought she was fine.  It was all very confusing.

Then the evaporators came and did an assessment of Ruby’s skills, verbal, fine motor, gross motor, etc.  They asked lots of questions about how much she talked, could she stack at least 6 small blocks on top of each other, and so on.  During the evaluation, Ruby was acting different than normal, she was jumping on the couches and just a bit all over the place.  At the end of the evaluation Ruby qualified for the program.  This means that she was significantly behind in several areas compared to other children her age.  The OT (occupational therapist) that did the evaluation said that if a child is this behind usually there is some reason (like autism or another condition). It was pretty routine for them, but a little jarring for me.  The OT said, “I can tell you right now that your daughter had sensory issues”.  Was she basing it off of the fact that Ruby was jumping?  Don’t a lot of kids do that?  She gave me some pamphlets on sensory stuff (which I was not familiar with) and we set up our next appointment. This began our journey in services for Ruby.  I am so glad that we made that first appointment because it led to learning about sensory integration disorder, ideas to help her increase her communication and motor skills, and was a gateway to a specialized preschool.

One of the most important things I have learned on my journey is that we need to learn the language of our child to help them grow.  Ruby’s language was different from mine.  She did not respond well to just verbal communication.  Her language was through fun play with a big affect (over exaggeration of emotions, everything is big and exciting!).  Using this big affect and making games exciting and engaging helped to draw her in and she would engage with me for longer periods of time.  It would also help her to gain more information during play to help her build her skills set because she was engaged and not off in her own world.  In essence, it helped her grow.  Helping Ruby to develop takes patience, consistency, and intentionality.  Once I learned (and am still learning) her language, how she sees the world and what reaches her the best, I really started to see her grow and connect better with our family.  I will be doing more posts on things I have learned along the way with how to encourage speech, how to help regulate (sensory), navigating the school system and state system, therapies that have been beneficial, and ideas of how to work on skills at home.  I would love to hear about what things are working for your family!

“We worry about what a child will become tomorrow, yet we forget that he is someone today.” — Stacia Tauscher