One step forward, two steps back

I have been waiting to write again because I honestly hoped this season would pass.  Although this is a blog that is supposed to be an accurate depiction of our life, it is so hard to go through difficulties publicly. Ellie has begun struggling with some regression and it is affecting her at home and at school. I feel as though we have hit a wall and bounced a hundred yards backwards.  She is having difficulties being able to transition from doing something she wants to certain things that are less desirable to her, such as circle time or doing work at a table. When an age appropriate response would be a grumble, she is flipping her lid.  She is yelling and stomping and calling names. This is behavior she exhibited when we started therapy and she had come so far.  I can’t help but grieve the little girl I have enjoyed these last 6-9 months.  As a mother, you want to do anything and everything for your child.  I so desperately want to help her and make things easier for her, but I just can’t.  Leaving school sobbing is, yet again becoming a normal occurance.  There is nothing worse than watching your child struggle.

As she regresses in her behavior, I slip more into trying to control things.  Trying desperately to hold on to normal.  I pray tens of times throughout the day and cry out for help, but still I struggle just letting go and letting God take this on.  I struggle with how much I need to do to further what God wants for Ellie.  I have always believed that God is in control of everything and has a divine plan for our lives but we are needed to carry out those tasks to make his will happen.  I struggle with not feeling like I am doing enough.  After diet changes, supplements, and hundreds of dollars a month in therapy, I am still left feeling helpless. Ellie is an amazing, sweet, bold and independent little girl who God has big plans for. For that, I have no doubt, but where do I draw the line in trying to control and change her future and being able to give Ellie to God.  He is her child after all.  I need to give these burdens to him in prayer and trust that we will get through these trials while glorifying him his power over our lives. Trusting that he is with us through the valleys and at the top of the mountain.

Regression is such a big part of any kind of therapy and in my head I know that, but it’s my heart that has the problem.  I immediately flash back to a year ago and living in full survival-mode. We made it through that once and can do it again, but I am going stomp my feet and ball my fists up and say “I don’t wanna!” I would love to do that if it would work and magically snap things back to her good days. Instead we will research and try to determine what might have caused this regression.  One possibility is that we don’t have all the pieces to the puzzle.  We know she has SPD, but for the most part her ability to regulate herself has been much better.  It’s that new things are starting to emerge that we didn’t see because all the sensory stuff was clouding our view. Regression and rigidity along with many other attributes, can lead one to question if we are missing something bigger.  Autism Spectrum Disorder is a definite possibility for her and with that diagnosis comes many positives and negatives.  On one hand, she would get insurance coverage for some of her therapies, which we are paying for out-of-pocket currently, and more help in public school when we get there, but again there’s the negative of the actual label. I don’t mean that in an offensive way at all.  Hearing your child has something wrong with them is never easy, but Autism Spectrum Disorder is hard for many people to digest.  Mostly because most of us growing up only knew Autism to be non-verbal and such an extreme.  Now it is exactly what it sounds like, a spectrum.  It ranges from high functioning to severe.  Most people don’t realize the lesser exists.  That you can be the exact opposite of our assumptions and be on the spectrum is new to most.  After all is said and done, no matter what letters come in that diagnosis whether it be SPD, ASD or alphabet soup, Ellie is still the same girl at the end of the day.  It comes down to knowing how we can help her.  So as of now, we are on a waitlist to see a developmental pediatrician to get a definitive diagnosis.  The waitlists are anywhere from 6-18 months long.  Although that is in itself a punch in the gut and a tremendously long time to wait when each minute you worry about your child, we will wait.  We will be as patient as we can be and trust that God will use this for His good. In the mean time I will be holding out hope and researching until I believe I can’t anymore.


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