My Holland

Today, I share something that I tend to not talk about a whole lot.  Something that I am not at all ashamed of, but it is my "cup in life" so I live it as my norm.  None of my children are "typical" children.  Each of my children have special needs.  I was told one time that my children do not have special needs because they are not visibly non-typical.  That is a lie.  It took me a minute to recover from the person saying that because their child is typical and their experience in the special needs world is very limited.  After this was said to me I realized that I was being judged because my children aren't the stereotypical children you picture when you hear the words special needs.

Last week one of my children was diagnosed with a neurodevelopmental disorder (ASD). One part of me was relieved because my husband and I had noticed large differences in this child versus our other two children.  I literally read fifteen books on strong willed children - in one week - trying to figure out this child.  I applied everything I learned and it made no difference.  When I heard the diagnosis I went to the library to return my fifteen strong willed child books and checked out other books on ASD.  I have been on the internet daily for the past week looking up resources, finding advocacy groups, learning triggers.  I have contacted friends who have children with ASD as well and asked what to do.  I have reached out beyond what I normally do, because I need help with this.  When I first heard the diagnosis I felt as if I was shipwrecked and pieces of my hopes, dreams, desires for a typical life were all floating around me, taunting me to grab hold and hold on because I was alone in a vast ocean.  By myself.  Cold.  Afraid.  And the only single thing I was holding onto was a tiny piece of driftwood called courage.  Oh I want to cry.  I want to scream.  But right now I am just grasping onto the courage I have.  As I reach out and read resources I am finding that the ocean isn't as deep, dark, and scary as it was.  I am finding that the torrent of waves and shark infested doubts are beginning to go to the wayside and every so often I hear a foghorn of hope.  I see a flashing light of arms reaching out to support our family.  

The life I have is not what I imagined as a little girl.  I didn't imagine having a cabinet dedicated to prescriptions for my children.  I didn't imagine having a schedule of when to administer medications and having to make sure I label bottles AM and PM so I don't confuse the morning medication with the bedtime medication.  I never pictured brain scans, neurologists, orthopedic specialists, xrays upon xrays, pediatric behavior specialists, speech pathologists, traveling to different states to see specialists.  I never imagined taking my children to a Children's Hospital.  I never pictured seeing my infant in double casts not knowing if walking was possible.  I didn't plan on holding my child for three days straight every other month while they have a migraine that causes such intense pain all they can do is cringe and hold on to you and sweat.  I didn't picture the stares I would receive as one of my children twitches, grimaces to the point of their mouth being ripped open, and picking their own skin and gums until it is full of bloody scabs.  I never imagined the looks of judgement and horror as my child has a meltdown in a public place because the lights are flickering, there is too much noise, the sensory sensitivity makes it so the child cannot be typical.

I also didn't imagine the intense joy as I got to wash my infants feet for the first time without casts.  I didn't picture the relief that the child I was recommended to terminate started walking, running, jumping, and climbing.  I couldn't imagine the knowledge I have of IEPs, Special Education Services, and Government programs available. I didn't picture the love I have for my child who is so proud because they were able to go a whole day without picking their skin.  I didn't imagine that I would have an amazing community of both special needs moms and typical moms that are rooting for me.  I never imagined the sigh of relief that I would have when my child vomits because then I know the migraine is ending.  I didn't picture the mama bear that is inside of me, the one that is fighting for my children through red tape, fighting to keep both my head and our children's heads up as we are in public and receive stares.  I didn't imagine getting the opportunity to travel to different states with one of my children - that is known as quality time, even if it is to see specialists.  I didn't expect for parents to come to me and say "because of you I didn't give up."  I never imagined the courage I would have as a mom.  The respect I would gain for other moms.  I never imagined the intense, unwavering, and unconditional love I would have for each of my children...who are not only special needs but are extremely special!