I wish someone had told me…

IMG_8132I wish someone had told me to throw out the book “What to Expect the First Year”.  When Jess was nine-months, she wasn’t meeting her milestones.  Realizing that this book was not written for us was disturbing. Milestones are important to recognize, however, not all children walk and talk at the same time.  If they are Angels, then there is no specific timeline.  Jess may have waited 10-20 years to accomplish some things, but as far as I’m concerned, it doesn’t matter when you cross the finish line.

I wish someone had told me that not all doctors were wise. All those years I spent waiting for appointments because the office double or triple booked gave me a lot of time to think. Some doctors could not say “I do not know” which prevented my young-mom-self from going up the chain.  Later it occurred to me that some doctors had to be at the bottom of their class, we met several of those.

I wish someone told me that seizure drugs can work beautifully and then, they may stop working. Sometimes, side effects can be worse than the seizures.  When on the right med with the right dosage, there were no side effects. This was my sign that she was on the right one.  It’s hard to realize that a medicine change made six months earlier can slowly stop working.  It isn’t the first thing you think of, you are thinking of what you had done that week that is causing the problem.  It took me a few go-arounds to figure this out.

I wish someone told me to not help Jess as much as I did. I did not know where the line was between helping and enabling. I fell for the charming smile while I played beat the clock.

I wish someone told me to not take everything that people said to heart. When asked, I’d share what Jess was accomplishing or struggling with.  More often than not, the parent of the typical child would say “wow…., my kid just made honor roll, or left with their travel team”.  As happy as I am for their achievements, there is something to be said for timing.  And, as if I didn’t know, to be told that my daughter wasn’t normal. I realize she isn’t “typical” (I much prefer that word), she’s unique. I’m not delusional.  However, this IS our normal and we are making the best of the hand that was dealt.

I wish someone had told me to not be a sheep. I wish I questioned what we were being told. I was fooled by type-A personalities who only think there is one way, theirs. What works for one child, doesn’t necessarily mean it will work for yours. There is no one size fits all educational plan. This is hard to remember when you are outnumbered in an IEP meeting…

I wish someone had told me not to worry. Spinning wheels get you nowhere. There may have been a smile on my face, but there was fear in my heart.  What if, what if, what if was the phrase that rolled around in my head.  When I let go of the fear and stopped looking at the time, it gave Jess room to grow. No one should be looked at too closely or feel pressured.  My job was to provide opportunity, support and endless patience (the last one is the hardest).  Just like you can’t lead a horse to water and make him drink, you can’t will your child to do something they aren’t ready for. The trick is, to keep asking. If you don’t ask, they can’t surprise you!

I wish I knew that communication was the key that would unlock the door. What had been available in her early years did not work for her and we had to wait.  Makes me wonder how many others had been lost because the technology wasn’t “there” yet.

Like many AS families, we had our fair share of sleepless nights, seizures that didn’t respond to meds, meds that turned toxic, corrective surgeries and ER visits.  As soon as Jess was given her official diagnosis (at 13), the following IEP  persuaded us to not continue an educational path, but focus on life skills. Thank God we had a hail Mary play a few months before she aged out of school that changed her world.  It was then that I realized that if we didn’t have a manual, no one else did either. Just because this is where she had been, doesn’t mean this is where she was going to stay.

What I know now that I did not know then is, anything is possible because we are continuously learning, just at our own speed.


2 thoughts on “I wish someone had told me…

  1. Thank you, Mary Kay, for sharing your wisdom gained on this journey. My angel Elise is 21 months, so we are just beginning, and I have so much to learn. Worry…it’s killing me; I really struggle with the balance between vigilance and worry. As her mom, I’m the only one that knows her and will be her a voice, yet where do you draw the line? It is affecting my health now, though, so it will help me to find that balance. Blessings!

    • Oh dear one, take a deep breath…she has a voice and you will find it… we should talk and get you off the ledge 🙂 I think the hardest part about a journey unknown is the second guessing. We had the advantage of not having a diagnosis for 13 years so I didn’t know what to worry about. This served us well. I strongly suggest you don’t stop talking and asking questions. When learning to talk (using an AAC device) you use one more word than they are able to say. This mindset encourages them to reach. I like to think that we do this with every challenge.
      Though I lived the day to day, I kept my eye on the future. Because I read that she understood more than she could say, I let this be our foundation. Not all children develop seizures. Jess did. However, when I read that there was a likelihood that she could outgrow them, I believed it and this too has proven to be true for Jess. Treat her as you would any other child by not focusing on the limitations. Though we did/do have challenges, when I look back, I don’t remember the hardships as much as I do the highlights. You are fortunate that the AAC that is available is so much more user friendly. Communication is the building block for everything 🙂 Blessings right back at you.

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