Friday, June 29, 2012

Parenting Special Needs Kids With Confidence

From the moment you begin to realize that your child may be different than other kids to the moment you leave the doctor's office with a diagnosis of autism (or other special need) most parents have a a whirlwind of emotions and preconceived ideas of what should happen. 

Some parents grieve. Some get angry.  Others get sad, and sink into despair.  Some of us don't have much emotion about it.  Most of us set out to learn all that we can about what needs to be done and what is best for our situation.  We look to the internet, support groups, professionals, special ed. teachers and more. We feel overwhelmed with the mountain of information that we encounter on the beginning of this journey into autism.  The overwhelming feelings don't end there.  As we sort through all of the information we find we have to discern what is relevant, and what is not right for our family.  What is fact and what is just speculation. The line between those two things is as clear as mud for most parents and the answer changes with each individual you talk to.  Vaccines, ABA, OT, PT SLP, Floortime, Son Rise, TEACCH, PECs, Home school, IEP, Inclusion, RDI, Sensory Diet, HBO Therapy, Chelation,  on and on. The terms come spilling out the deeper we dig and the more we learn. What to do?  What not to do? What is best for my child?  The pressure to get it right is indescribable.  We hear awful things such as 'window to development is closed after....' and to 'keep your child engaged at all times or they will slip into their own world'.  We desperately want our children to be as successful as they can be. As parents,  we feel tremendous responsibility to do our best to give our children the best chance at life as we possibly can, which leads to another set of emotions after diagnosis.  These are the fearful, anxiety filled, guilt ridden kind.  The what-ifs set in and they 'if- onlys'.  We worry that we're not getting it right. We wonder if we're missing opportunities for growth and development. We never can know for sure. There are no clear cut answers.

I'm usually a pretty logical minded person, with a pretty clear cut plan that has been researched and carefully put together. This is how I do everything, especially parenting.  This summer, there were no available ABA therapists to come to our home for Beans.  I was offered an opportunity to take him to the clinic to attend therapy there.  Even with all my knowledge and all my research I was paralyzed by indecision.  I really don't fully agree with the whole premise of ABA.  I don't like my son getting any therapy that I am not directly overseeing. Call me overprotective. I don't mind. I am extremely mindful of how my children are treated and because some of my ideas on autism don't always align with the majority I am particular about who, what and where my boys receive therapy or treatment.  There were also other reasons as to why I chose to pass up the therapy, but in the end that's what I chose.  I agonized over what was right, and what was the best for Beans.  I worried that the awful regression bug would crawl into our lives if I didn't keep up with his goals over the summer.  I worried that he wouldn't be engaged enough this summer without therapy.  I worried and fretted.  That guilt I spoke of earlier was ever present.

After a couple weeks of this I made the decision to be confident with what I chose.  I had to trust that I am doing my best with what I have and who I am.  I can't let all the awful negative emotions cloud my view, because if I let that happen I am not fully able to be the mom that I need to be.  I have to be secure in knowing that I am doing what is right for Beans and the rest of my family.  I have to let go of my fears, the people that don't approve, and my attachments to superficial understandings of life.  This doesn't mean that I won't make mistakes.  This just means that I will be open to learning from them and shifting opinions as I learn, but doing so in honor of my own values and goals. 

Life for special needs parents can be a bumpy journey.  We need to remember that we're only human and allow ourselves space to enjoy it without worry, and regret. What do you think would change if you let go of worry, guilt and regret and spent more emotional energy being confident and loving?

Friday, June 8, 2012

Thursday, June 7, 2012

Mindful Thinking- When To Let Go Of Owning Blame

Today has been one of those days.  Nothing is terribly wrong.  We're all still alive, but setting aside major catastrophe, quite a bit is just not going well today.  One issue in particular has been an on-going issue with me for many years, so I think that's what I'm gonna talk about in this post.

I signed onto Facebook and started scrolling through all my favorite pages this morning when I awoke, like I always do.  I came across a few of those awful (IMO) inspirational types of posters that talk about how heroic a disabled person or their mother is for this or that.  There was one in particular that struck me as misleading and discriminatory on more than one level.  I didn't save it or memorize the quote, so I can't share it.  It's beside the point of what this entry is about anyway.  I decided that I should say something, so I left a comment about how I felt it didn't make sense.  How I felt it was understating people that are forever in wheelchairs and unable to walk. I wasn't the only one who left a comment that wasn't in favor of the quote being displayed in the picture, but I was the one who the page owner let have it.  According to her I was not understanding her child's journey to walking, understating her pain, not thinking before speaking and she was being gracious in her response to me by not getting 'negative'.  I immediately, felt like I had done something wrong. That I was bad for what I said and my emotions began to spin out of control into an abyss of negativity, which for me leads to meltdown.

This lasted for about an hour.

Then I thought wait.  No, just wait a freaking minute.  No.  I was not out of line.  I was respectful in what I said.  I wasn't insulting.  I wasn't the only one who had an issue with it.  I suspect that her 'think before you speak' comment was directed at me due to the fact that I had posted under my AS page name.  Immediately, my opinion is called into question, because I may be just not having empathy and not thinking before I speak, which can be a trait of AS.  No.  I thought about it. I said it.  That person just didn't want to hear it, and instead of having a conversation about it, she was rude.  People post things on my page that I don't agree with.  I have never, not ever been that rude to them.  I want to know why they think the way they do.  I respect they might see things differently than me. I did not get that in return.  That is okay.  It's her page, and she can do what she wants on it.  I unliked it.  All is good.

This time, I was able to stop and think before taking everything so personally. I am proud of myself for that.  I have been working on doing this for quite awhile.  In my mind I have always felt that when people attack me like that I was the wrong one and I was flawed, but this time I was able to see that maybe they were reacting to their own issues that really had nothing to do with me as a person.  My self worth has grown stronger and my ability to be even tempered has grown and for that, I am thankful.

Friday, June 1, 2012

Safety Solutions-Repost To Include Important Info

I don't normally re-blog my own posts, but I am going to make an exception with this one  As many of you probably already know, we had a Wandering scare with our nonverbal son, Beans a few months ago.  I wrote a post afterwards with details about how to keep our wandering loved ones safe. Safety Solutions For Autism and Other Developmental Disabilities .  I was contacted by one of the site owners of  Smart911 requesting to be added to the post and my blog.  I thought this service was so valuable that I wanted to share it with as many as possible. The original post has too many links to allow for a quick copy and paste.  I have edited it to add the 911 information, but couldn't move the whole post to the beginning of the blog without rewriting the whole thing again.  So, please visit The Safety Solutions Post and check out Smart911's page. Thank you!