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?

8 comments:

  1. This comment has been removed by a blog administrator.

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  2. Getting angry is quite normal. As long as they don't do anything to harm the children.

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  3. Thank you for this post. It really sums up my journey at this stage. It just helps some how to 'hear' another parent say it. I'm trying to believe more in my abilities as a parent rather than fretting over times I haven't met my own aspirations. You are right our emotional energy is better spent that way.

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    1. Thank you for reading and commenting! I'm glad this post was of some help!

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  4. What a wonderful way to explain what most parents go through. Yes there is so much emotion that goes through a parent from the start. Gotta say I was born to worry. But I also like to call it making the weighted decision. I gotta think about it first then I gotta make my decision. I no longer talk about it with a lot of people cause I think thats when it seems more like being worried. I draw my thoughts together. I actually don't want to know how someone else feels or would make my decision if they could. ( In my journey through I've met the well meaning person who thinks it's great to help you down the path of worry) Knowing that I've made the decision and I'm comfortable with that. I no longer worry about the decision after ward. I laughed about the ABA thing that's one hard decision eh. Thanks for sharing you will probably help a few moms out in what ever stag they are at. Love your writing.

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    1. Thank you! I hesitated in posting, because of the ABA comment mostly. There is a variety of reasons I didn't want to do the therapy and I really was biting my lip worried that I'd get some nasty comments about how I was destroying my son's future ect., but I have not. I have gotten only pleasant replies and I am grateful for that. I think when people get nasty about decisions we make, it's only their own parenting insecurities pouring over into our lives. (Of course, this barring really out there parenting methods where most would generally agree harm is being done) We can only do our best with what we have.

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  5. Great post! It reflects exactly my thoughts and feelings on this matter (having just received a diagnosis for my son). I thought I was the only one going against the grain by doing what I feel is best for my family even though it is not what society views as the best decision. Thanks for having the courage to post this.

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    1. Thank you for your comment. I remember when I first got the diagnosis for my youngest son (he was diagnoses first due to the fact that he is so unmistakeably ASD) that the people that came to our home for therapy would act like I had to make my whole life about therapy now. I had to be always working on his goals and never letting him just sit and stim. I remember them making it sound as if his world was doomed if I didn't keep on top of trying to teach him to be more normal and to communicate. It felt like the world was on my shoulders. I felt crushed. It wasn't the diagnosis that got me panicking. It was what everyone told me it meant. So, I'm glad that you saw this and can breath a little now knowing that just like any other parent you are going to try different things and just like any other child, sometimes it will be right, and sometimes it won't be, but what matters most is that you do your best with it all.

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