Saturday, July 6, 2013

Our Special Needs Journey: Part 1 - Life with Special Needs Kiddos

I really, really, really love my life.  I simply could not be more blessed (okay, a vacation and new roof would be nice).  But sometimes I gotta call bullshit. I know God has a purpose in every circumstance, and most days I cling to that proudly.  But sometimes (like when my ODD child kicks a hole in a door, and I can't figure out why) I cry out "really?! Seriously?!"

My hubby is very healthy but injured his back at work a few years back, had surgery, and still struggles with pain.  And with working 3rd shift he never sleeps appropriately.

I struggle with Endometriosis, Crohn's/IBD/IBS, gallstones, back pain (had surgery a couple years ago), horrid pregnancies w/ a plethora of complications (and multiple losses), and seasonal allergies.

My oldest (12) has Aspergers, ADHD, anxiety, speech disorder, dyslexia, dysgraphia, and sensory processing disorder.  We cannot determine why she has not gained pounds or inches in over 3 years, and continue to visit expensive specialists and take tons of tests.  She has come so far in the 6 years since initially diagnosed.  I am proud of her progress and of the beautiful young woman she has become. She wants to be helpful, loves the Lord, and is such a kind caretaker (kids, animals, plants).  But messy, weepy, lies frequently, can't stay on task, doesn't remember what was just said, etc.  School is hard. Chores are hard. Making and keeping friends is very difficult.

My younger girl (9) is high functioning autism, ADHD, Oppositional Defiant, Dyslexic, has sleep apnea, precocious puberty (yes, she got her period at 5 and has acne already), sensory processing disorder, and asthma.  She is unpredictable, moody, and often angry.  She struggles with expressing her anger in a healthy manner and often becomes violent.  Homeschooling is difficult, to say the least.  I spend a fortune on nighttime pullups since we cannot stop the bedwetting.  But what a sweet spirit she has.  She memorizes scripture and no one makes Baby Bruce laugh like she does!

My oldest boy (4) is a precocious, entertaining, and energetic firecracker.  He has esophillic esophogitus, meaning his throat bleeds.  He has struggled to gain weight since 5 months old and did not hit the 1st percentile on the charts until he was 3 years old.  He has a heart defect called bilateral valve defect - he will not need surgery till he is an adult but his murmur must be monitored.  He goes to an amazing special ed preschool for his developmental delays.  He has speech, social, and motor issues but you'd never know, he has come so far and is one smart cookie.  He will likely "fall off the spectrum" in a few years.  His sensory processing disorder is more severe than his sisters' though.

My precious miracle baby is just 5 months.  He is such a blessing and very healthy.  However he already has a nebulizer for his wheezing and breathing issues and is allergic to dairy. 

I KNOW that where God has called me he will equip me, but there are days I feel so inadequate.  My husband and I are convinced that God has called us to homeschooling and we are the best teachers, but that does not make it easy.  The hardest part may be that I care what others think of me.  My children don't look disabled, making it so easy for others to judge us.

It's expensive and exhausting. I wake up daily needing to cry out to God for strength and patience.  I pray He will equip me and use me for His purposes in this.

Why do I tell you all of this? Because I don't belong to a support group. Because I am home with kids all day, unable to tell another adult about my challenges and my victories.  This is virtual therapy, and that is all I can afford right now! :)