In Their Eyes

Whenever I hear someone say, “the only kids I like are my own” it makes me cringe.  You see, I have one (or two) of those kids that sometimes melts down in the middle of Target, has an insatiable need to touch everything and everyone in sight, is powered by the sun apparently, because they never run out of energy, will talk your ear off… You get the picture, I am pretty sure my kids are the type that make people make this statement.  In their eyes, my kids are not likable.

In my eyes, my children are perfect.  I have been working hard to gain a more realistic view of my children compared to their peers.  I have only ever known how to be a parent to my children, my adorable, sweet, high maintenance children.  I have grown so accustomed to working with, or sometimes around, their difficulties, that I lost sight of what typical development looks like in a child.  Through the process of having my boys evaluated, I thought I was gaining perspective on this.

As a part of the medical evaluation that we are having done for B next week, we needed to have some paperwork completed by his teacher.  She quickly got it done, and sent in back home in B’s backpack, sealed in an envelope.  Since I have become quite anal about organizing the mountains of paperwork, I make a copy of everything that we fill out to keep in my file as a reference. Yesterday, I brought that envelope to work with me so I could make a copy.  Bad idea.  Bad, bad idea.

Seeing your child in another person’s eyes can be quite painful.  Especially when you have an impulsive, high energy child that does not understand socialization, but yearns to make friends, doesn’t quite understand how to control their body and becomes grossly overwhelmed when their senses are stimulated.

I, apparently, still do not understand the extent of differences between B and his typically developing peers.  Almost every question on the form was answered on the extreme ends on the rating scale.  The questions that particularly started my heart on fire were: is disliked by other children, answered pretty much and makes friends, answered not at all.  The knots are twisting in my stomach and tears welling in my eyes again as I write this.

Not only did I have to see B in her eyes, but I caught a glimpse of B in his peers eyes.  It hurts my heart.

Hurting or not, I am trying to take the positives out of this situation.  A few things I have come up with:

  • When asked if B teases other children or calls him names, she answered not at all.
  • His teacher wrote that his strengths are being highly intelligent and articulate.
  • B’s teacher is very interested in learning new ways to help him in the classroom.  She asked to receive practical applications for behavior and sensory strategies for the school setting.
  • I have learned to fill out evaluations based on the worst day.  I assume his teacher uses this same practice, which is for his benefit.
  • Most importantly, B loves preschool.  He does not notice the differences, or dislike by his peers, yet. We are being handed the opportunity to help him before he starts noticing.

Today is a new day.  I am re-framing my thoughts.  My heart may still be smoldering from the fire yesterday, but the flames have gone out.  Today, I am thankful for his teacher’s honest opinion. For without her eyes, B may not get the things he needs to grow into the beautiful, compassionate young man I know he can be.

My Guiding Light

May of 2010 was a tough month for me.  We got the official word that B is on the spectrum.  During the weeks following that fateful day in May, I tried my best to get all my ducks in a row.  I was learning the  ropes, the processes, the in and outs of the system.  And I was trying to do it on my own.  And it was not working.

I needed help.  I was beyond stressed out and I didn’t know where to turn.  I tried getting in touch with the autism specialist that was assigned to B’s case in our school district.  She emailed me, what I realize now, is a fantastic document with everything you might need to know about finding resources in my area.  At the time, though, it was useless.  I didn’t understand the jargon.  I didn’t know which step I needed to take first.  I couldn’t put one foot in front of the other and get done what needed doing.

I was crying every single day.  I felt like I needed to accomplish a million things, but nobody would stop and explain to me what they were.  My life was falling apart around me and I didn’t know how to fix it. My friends and family were wonderful.  They encouraged me and gave me a shoulder to cry on, but they didn’t have the answers I needed.

In early June, I went back to the copy of the autism resource guide I had received to give it another shot.  I still didn’t understand much of what I was reading, but I did stumble across a section about community supports.  Right there, in the middle of the wealth of information, I found what has become my guiding light.

On June 15, I attended my first Autism Support Group meeting.  It was glorious.  Not only was this group of parents willing to let me cry on their shoulders, but they were able to answer my questions.  They were able to nod in agreement.  They were able to really understand what I was going through.

I left the meeting that evening with a new determination.  All of these people were doing it.  If they were making it in this confusing, whirlwind of a world, I could too.

That night, I joined the group’s list serve email group.  I now not only had a physical place to go once a month, but also a virtual place that was there for me every day of the year.  I started posting questions.  I was getting answers.  I was able to take some baby steps.

My friends and family continued to provide me with a level of love and support that could not be matched by anyone. They have been taking those baby steps with me.   They carry me on this journey.

This may be a bold statement, but I am going to say it: the single most helpful thing I have done since starting our autism journey, is to join a local parent support group.

I have attended every monthly meeting since June.  I check our list serve most every day.  I joined our group to walk for Autism Speaks.  I went out to dinner with several ladies for a mom’s night out.  I email and talk to several mom’s with similar aged children.  They understand.  They commiserate.  They answer my questions.  They are my guiding light.

My Fortune Cookie Spoke to Me

That’s right folks, my fortune cookie spoke to me.  Yesterday, in an attempt to wallow in my self-pity, I treated myself to Chinese food for lunch.  As I was munching away at my fortune cookie, I glanced down at my fortune:

“Delay is the deadliest form of denial.”

We had our big EI evaluation today.  This morning, a four member team came out to our home for about an hour and a half and did the big run down.  This included lots of paperwork ahead of time, lots of parent interview this morning and lots of watching A as he played.

I was having a difficult time reading the evaluators during the interview and as they left.  I have come to realize that these evaluation teams are trained to deliver compliment sandwiches.  It would not be unlikely that you might here something like this.  “A has great gross motor skills, however, you have very valid concerns related to his sensory processing.  We are very happy to see some good eye contact.”

I understand not wanting to just put it out there, but this morning was such an emotional roller coaster.  I did not know how to feel or how the team would act following out meeting.   Is he going to qualify? Are we going to have to reevaluate? Am I a paranoid, crazy person?

My fortune cookie was right, delaying this evaluation would have been denial.

A qualifies for services.  They want to qualify him under developmental delay, both cognitive and speech.  He would also receive service by an OT due to his sensory issues.  They do not want to qualify him under the autism label at this time, due to his age.  His case manager said they would like to reevaluate for autism at 2 years 8 months, which is 15 months out.

I am relieved I called EI when I did.  I am relieved A is going to start receiving the services he needs.  I am hesitant to accept not completing the ADOS, if they feel now that he would qualify after doing the ADI-R, only due to his age.

On one hand, I understand not wanting to over or misdiagnose autism.  But that is 15 months of greater services that he could be receiving at such a critical time in his development.  I feel my fortune telling me to fight this a bit harder.  Why delay services for fear of misdiagnosis? Why be in denial, due to his age? We all know what we are seeing.

On the other hand, I feel like I should give him a chance to catch up.  To say, let’s see what these services can do for A. Maybe he will make great strides in the next 15 months.

I am going to call the school psychologist tomorrow.  I want to get her take on the matter.  What did she see? What are her concerns? What are her hesitations?

Fighting this fight is so difficult.  It is so hard to know what the right answer is, to know what is worth fighting for and what is worth waiting out.  I am at a loss right now.  Maybe I just need to order take out tonight to try to get some more answers.



Thinking and Crying

I spent my evening last night beginning the long, emotionally draining process of filling out the Infant/Toddler Sensory Profile and the Bayley Social-Emotional and Adaptive Behavior Questionnaire.   Those 300+ questions have the ability to make a grown man, or woman in this case, cry.

I was doing just fine as I was filling out the Sensory Profile while B and A happily played away in the basement.   I was able to go through and quickly answer many of the questions and then went back through and thought intently about the rest and made some comments at the end of each section.   I started working through the Bayley Questionnaire, but then had to stop to go put A to sleep.

This is when things got hairy.  My husband and B left to go to Target to pick up a few things and I was alone in the quiet of our house rocking and nursing my baby to sleep.  The familiar tune of twinkle-twinkle was playing on the sound machine, the room had a warm glow as the sun set, A was softly stroking my skin as his sweet little body drifted into slumber and I started crying. The crocodile tears were a flowing.

I sat in A’s room rocking and crying and thinking for a long time after he fell asleep.  As I studied his perfect little silhouette, I was thinking and crying about many things.

What did I do wrong?

What can I do to just make this go away?

What did they do to deserve a more difficult life?

I know the answers to these questions: nothing, nothing, and some more nothing, but I still think them and cry over them.  I think and I cry because I feel so helpless, yet at the same time so overwhelmed and overworked in all of this.

By going through this process, I know in my heart that I am doing the best thing by having A evaluated.  He is so much like B was at this age; I know what I am seeing.   But then the mother’s guilt sets in and I think I may be selling him short by focusing on all these signs.  And then I cry.

I think and I cry.  I cry and I think.  I can’t stop thinking.  I can’t stop crying.

I know we haven’t been officially riding this roller coaster for long, but when does it get easier? Does it ever get easier?  Will I ever stop thinking? Will I ever stop crying?