Parents of Children with Special Needs

Sometime ago when I was really struggling and blue, I was given a kind gesture by a friend.  It was a grief workbook/journal.  I realize that this friend has the best of intentions, and unlike most people, she acted on them. It is really a rare occasion when a friend reaches out to me.  I'm sure it's just plain awkward for people.  They don't and can't relate; therefore, it's hard for them to even begin to think of what they could say or do. So doing nothing is the easiest choice. Well this friend did something.  She brought this grief workbook to me.  I flipped through the book.  It's quite a workbook.  Covers all the stages of grief that a person goes through.  To this day it sits on the shelf and hasn't been cracked since the day she delivered it. I never intend to crack it. I DISLIKE workbooks. I don't care to ever read another book on grief. That was so 14 years ago. But  the point is she did something, but didn't know what to do.


I don't really struggle with grief. Grief rears it's ugly head periodically through my life. It wreaks havoc and leaves. It's a rolling hill up and down. That's how grief is.  I no longer grieve over the lost hopes and dreams I had for my son.  To do so would be a disservice to him.  He is who he is.  I love him just as he is.  I can honestly say I wouldn't change him if I had the power to do so. He has helped shape me into who I am. He has changed my perspective on so many things.  I wish I could change the things that bother him about himself, for him, not me... make sense? 

What I struggle with is being overwhelmed.  Overwhelmed by his care.  Overwhelmed by the fact that there are times when leaving the house and buying groceries is a monumental task.  Overwhelmed  trying to keep up with all of his needs educationally and medically.   I am overwhelmed by the isolation.  I'm overwhelmed by the juggling of duties. I'm overwhelmed that I can't maintain friendships very easily.  I am overwhelmed by the fact the stress could take years off my life. I'm overwhelmed that I'm having bad hair, because I can't get time in my schedule to get to the hairdresser. I am overwhelmed by the strain it puts on my marriage, because it's hard for his dad to live this secluded life.  Yet, my friend thought I was overwhelmed with loss.  She couldn't be farther from the target.  I'm just stressed and overwhelmed. So in the process of trying to help her understand I did a little research.  I came across these websites and articles about raising a special needs child.  They were quite enlightening. 


I have copied and pasted them just as I sent them to her in an email. I think there was some part of each one that captured a piece of my struggle.  I hope there may be a piece that could help someone else educate about their struggles raising a special needs child.


http://www.abilitypath.org/love-laugh--live/stress-relationships/coping/articles/mothers-of-children-with-special-needs-and-combat-soldiers.html
http://psychcentral.com/news/2009/02/19/parental-stress-with-special-needs-children/4219.html
http://www-e.openu.ac.il/geninfor/openletter/ol17/12-14.pdf
http://www.post-gazette.com/pg/07129/784323-114.stm
http://www.webmd.com/balance/stress-management/caregiver-advice-cope
http://www.and-so-i-write.com/2010/07/do-parents-of-special-needs-kids-invoke-self-isolation/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1403651/?page=3
http://severedisabilitykid.blogspot.com/2011/01/dear-new-parent.html – I love this... My favorite lines are “And no matter which choice you make, someone will tell you that you are wrong.Then you will lose many friends, and some family.”  


If that last one couldn't be more true.  I've had friends tell me I'm wrong. I'm wrong for how I handle situations.  Wrong for how I handle my stress.  Wrong for not putting myself out there so that others will be more open to helping me. It all comes down to the fact that the burden falls on me to make it easier for other people. Well guess what?  I'M TIRED!!!