Let’s talk about special needs parenting

If there is one thing I'd want parents to know is that there is no "one size fits all" to ANY kind of special needs. Even autism has its different "labels", but it all comes down to a child with SPECIAL needs, not a plan like the schools try to organize. I was so sick and tired of the meetings at school and the new people every year around the table, with their ideas they could "fix" my son and turn him "normal" if they went by a specific plan. Well that does not work. They are not "normal", nor do they respond to it. I ultimately had to pull him from the school in favor of online public school, where the only one in charge of his schedule and environment is me. And when it comes to anything regarding a special needs child, you need to LISTEN to them, because they are the only ones that can help you figure out how to raise them. 

 @SteveBorgman  @lostandtired  betsy  I have heard a talk on how one person was overwhelmed with the load that God had given him, so he asked the Lord to let him exchange burdens with another person.  So God let everyone pool their burdens together and each person could choose a new burden from the pile.  In the end, everyone took back their own burdens because all the others were too heavy for them to lift.  When I see the stories of other parents, I am awed and amazed at all they have to cope with and the struggles they go through to do the best for their children.  Life is not peaches and cream here on the farm, but others have it far worse.  My struggles are as nothing to the others.

Karen

We feel alone...  Our DD appears "normal", so people (adults and children) are not not always kind to her, or to us her parents when she has an anxiety attack, impulse control issues, or talks a blue streak about an obscure topic using her stunning vocabulary.   (Do you REALLY think I'm going to beat my child with a belt because YOU think she needs it?!?!)   Even our now-former pediatrician treated us all poorly.   Most of our "friends" - the parents of typicals, can't understand why DD needs her various therapies and inventions "because she is so smart".   We have 2  families of friends who have actually tried to understand DD's quirks and have embraced them.  (Bless you, Julie, if you are reading this!!)  That's it.  The others have essentially abandoned us.  Our immediate families are finally coming around.  She's 9...  There is no place in our local school system for DD.  Statistically, there is not another single man, woman or child in our village with an IQ as high as hers is, and yet if she were to have an IEP she would need a lot of extra support.  So we homeschool, with all supports coming privately and most at great expense of time, energy and money.   It often seems we are even outcasts within the special needs community.  Though DD has many "Aspergers Traits"  as per testing and evaluation, and, she has DX of Sensory Processing Disorder and ADHD, she is not on "The Spectrum"/"disabled enough" to qualify for many activities and supports she would benefit from, or,  that we her parents who need support, would benefit from...  On a positive note, the last year has seen tremendous growth and many milestone victories!  Like learning to ride her bike this summer!  Never thought it would happen.  We were lucky enough to find a chapter of "Lose The Training Wheels"  within an hours drive of our rural-community-in-the-middle-of-nowhere that would except her w/o the Autism label.   This year has also seen me discover much about my own "quirkiness", and DH has come to terms with being the only neurotypical in the house, as well as the only one without chronic physical issues.  (Rob you can surely relate!!)   Above all, we are convinced that DD is destined for great things.  When not anxious or impulsive, she is gentle, kind, compassionate, loving and generous.  Her heart is pure.  She has a delightful sense of humor.   And as we celebrate our victories, we know where we've been, and what a looooong way we have come...  =)

I'm just tired of feeling like a walking poster child. My daughter is a rarity in her town and I'm am BLESSED to say it's rare that we are ever not treated delicately when it comes to Carrie. But every once in a while I'd love to have an outing or an evening that isn't about autism, one where my whole family gets to just go and do something like other families do. Every time I turn around, autism is getting in the way, whether it's not being able to stay for the cake and ice cream at a family birthday because everyone's going to sing, or having to watch the fireworks from eight miles away because they're too scary. I know, first world problems, right? :) I adore my child, but sometimes I hate what autism has done to her, and when people talk about how autism is a part of who they are and no one should ever want to "cure" it, I get so angry. I would eat my right arm if I could make it possible for my daughter and my family to have a normal life, and then I feel horrible for thinking that way. There is no end to the guilt and hurt when you're a special needs parent.