Thursday, August 1, 2013

Our Special Needs Journey: Part 3 - I'm Not a Supermom, but I do Have a Super God

I'm having a Dear Diary moment.  I am often asked "How do you do it all?"  and I don't really have an answer, other than by the grace of God.  [Hey, so later I learned I'm Bi-polar II and don't sleep for days getting projects done.  So I guess the answer is "because I have a mental disorder."  :)]

I love being creative, making people happy, serving others, and blessing them.  I enjoy being busy, I thrive on activity, and I can't single-task, I MUST be multi-tasking at all times.  I may be trying to "earn" my place - to "deserve" to exist in this world.  That's a psychological discussion for another day.

It's a curse, really.  Because I am so busy moving that I am not pausing to think.  I don't feel sorry for myself often, but there are those moments, when it seems like life is working against you each corner you turn. So here's my secret truth: Sometimes I cry.

I CAN'T do it all. It's in these moments I come crashing to my knees and cry out to the Lord for the supernatural ability to make it through the day.  I can't be the only one that feels totally unequipped for their calling, right? Lord, would you please equip me? I need strength, patience, and energy. I'm just so tired.

Having children with special needs is usually not something I am upset about - I don't often have "why me?" moments.  The better question would be "Why NOT me?" Today, my heart is broken.

Julia had her re-eval yesterday and the parent meeting was today to discuss the results.  She had briefly been on the highest functioning end of the Autism Spectrum, as she has speech struggles and that cannot align with an Asperger's Diagnosis.  And oh, how much progress we've made over the years!

The progress was obvious in her testing - hooray! But she is solidly back on the Spectrum, still high-functioning but with much more autism-related struggles than I realized.  What this means is that she struggles with everything autistic children struggle with, but at a higher functioning level of the spectrum - she is verbal, toilet-trained, etc.

So while we have overcome many sensory issues (for example she will now wear certain socks and can fall asleep without a heavy blanket wrapped around her like a burrito - though she still uses the blanket to sleep, just not having to have it), there are now new ones to address.

With growing older comes new challenges: bras (a brand new sensory issue), puberty (hair is "itchy" and she's uncomfortable with it all day), and hygiene (brushing her hair is like pulling teeth and she cannot grasp why she needs to shower and wash & floss).  The doctor is having her return to OT specifically to address these new issues.

And while Julia is a very sweet and fun girl, she is emotionally/cognitively far behind her peers.  I held her back and repeated 5th grade hoping she would be more in alignment socially with her peers - not because I WANT her to crush on Justin Beiber or start rolling her eyes, but because I want her to have close friends she can relate to. 

 This goofy girl is simply amazing, delightful, filled with sunshine, and such a wonderful big sister!

Today I found out her social-emotional level is that of a 6-8 year old.  She's 12.  The doctor reassured me I have done a good job thus far, but there are now new issues beyond my abilities.  We've pushed past the basic sensory issues that made going out of the house impossible.  We've made huge progress academically and really built up her confidence in herself in this area.  We've found where and how she learns best and how to help her learn in the areas that challenge her.

Where I am falling short? The new challenges that come with growing up -- transitioning, getting a job, spending money, self-care, SATs, college, driving, dating.  Ugh. I just don't know what to do!! Social skills therapy is not covered by insurance, these classes cost anywhere from 2000-6000 out of pocket for 6-8 weeks - and I have at least TWO needing this therapy. 

My heart breaks for my child.  I hate seeing her struggle - I hate that she lacks true friendships.  I want other girls to WANT to play with her.  Not just put up with her on occasion because they feel sorry for her, but LOVE spending time with her since she is just so awesome to be with.  Other kids don't get her - and she doesn't understand them. 

The crazy thing is I don't think it bothers her much to not fully "fit in." She loves spending time with younger children and adults. She seems happy, content, connected.

Part of me wishes I had the kid that was the bully, not the ones who are bullied.  It is so hard to see your child struggle so greatly, be so out of sync with the rest of the world, and to be teased.  Her blessing is her curse.  She is, fortunately, high functioning (as are my other 2 kids), which is great news.  With help she will be able to go to college, get a job, get married, be a mom, and lead a very typical life.

This is also part of the struggle - her "normalcy" and ability to function on a fairly typical level is what causes judgment from peers.  The world understands that someone in a wheelchair has certain difficulties.  Down Syndrome is a pretty obvious thing to spot. Several kids with special needs are able to elicit empathy and understanding from the general public. Autism is not a specific "look" or key "behavior."

Not so much so when you appear "normal/typical."  Instead, she is "weird" and kids "just don't really like her." Her social skills have improved greatly but are a long way from being at the same level as her peers.  People in stores and other public places stare, sigh, roll their eyes, whisper, or flat out say something rude. 

As a hyper-emotional, overly-sensitive person myself, this hurts me personally.  Praise the Lord, Julia is oblivious.  She thinks every person she has ever encountered is her dear, close friend! I want to be so trusting and accepting of the world as she is!

So, Heavenly Father, would you equip me today (and every day)?  To be consistent, show love, build up my children, teach them all they need to know, and to handle their unique needs?

I was at Pacer Center today for an intro to a special needs science camp Julia will be attending next week.  It occurred to me how very blessed I am to have the children I do.  Life could be so much more challenging! My kids have it easier than many, many others! Yet, as I held a baby and chased after an energetic 4 year old while the girls tried to meet the other campers, I felt tired.

Lord, I am infinitely blessed, far beyond what I deserve.  But I am tired.  Really, really tired. Exhausted. Overwhelmed.  Would you show me what things I can let go of? Would you expand my time and give me supernatural energy? Stand beside us in every step of this journey?  Will you provide for our financial needs - especially regarding the costs of therapies and meds?

Because, I really don't have a cape.  I'm not a superhero. I merely serve a super God and live for His purposes and to His glory.

Someone please validate me - tell me you relate. You feel inadequate too.  It would help!