Owen and Ben's Journey Through Autism

Owen and Ben's Journey Through Autism

Tuesday, May 21, 2013

Just when you are on a high

You are brought back down to reality.

I cannot pin point the exact feeling or how it actually happens when your heart breaks. It hurts. You can't stop it. My heart has only broken a few times in my adult life to where I would publicly be able to sit down and write about it, which I have.

Specific to this, it was when Owen and Ben were diagnosed; my heart actually broke. I guess if I had to describe the feeling it would be a hurtful stinging that made its way to my eyes that made them water uncontrollably. I don't wish this feeling on anyone; nor do I enjoy experiencing it or writing about it, but here it is. My mother and my mother in law said my way of dealing with things is having the ability to write about it; and I like having this as my emotional release - I am glad I have found this way to cope.

When I experience this feeling; like I said, it stings - and that feeling implants itself in my brain to the date and something I will never forget. Example;

February 11th 2010 - Dr. Donkor confirming Owen had Autism.
March 17th 2010 - Dr. Snyder confirmed and gave diagnoses of, "Moderate-Severe".


May 21 2013 - Was advised in a meeting today that Owen has a lot of wonderful skills, actually communicates better non-verbally and problem solves better. Cognitively Owen overall is Mildly Delayed.

(cue heart breaking)

I am going to explain why.

When you have a child with Special Needs; your life is your child. Yes, with a typical child it is similar, you live your life for your child, love them to the moon and back - but having a child with special needs is different. Parents of Special Needs children are burnt out, tired, and at a HIGH percentage of divorce already - adding a child you could have for the rest of your life is a hard pill to swallow sometimes. Here is an article I grabbed by Ellen Seidman to explain it a bit clearer than I can.

Poll stat: 53 percent of working moms and dads polled with kids under age 18 say it’s difficult to balance job and family responsibilities

Special-needs parent fact: Given the additional medical appointments and therapies moms have to manage, I’d say that work-family juggling challenges are significantly magnified for parents of kids with special needs. Not a day goes by when I don’t think “Wow, this is hard”—and marvel that I haven’t run screaming down the street because I’ve finally lost it.

Poll stat: 73% of moms say they are doing an “excellent” job as a parent

Special-needs parent fact: I’m a good parent and yet, I never think of myself as doing an “excellent” job with Max. This is because there is always something I feel like I could be doing with him—some therapeutic exercise, say, or trying a new app that could help improve his reading skills. With so many parenting resources these days, perhaps a lot of mothers feel this way—but when you’re the parent of a child with significant delays and challenges, you truly never feel like you are doing as much as you could. So if you ask me what kind of job I do as a parent, I’d say “Good enough.” Because that’s the best I can do, and I have learned to be satisfied with that.

Poll stat: 43% of married moms say they are very happy with their lives

Special-needs parent fact: The world may perceive us as being unhappier than other parents. And yes, we may very well have more pressures and stress. But the truth is, we get just as much bliss in our children as other parents do from theirs. They may have special needs, but they are not “defective.” They are our children. In fact, our happiness can be that much greater because our kids work so hard for their achievements. The first steps my son took at age 3 weren’t just milestones—they were miracles.

Now can I add a Developmental Delay in that scenario?

Autism is a HUGE spectrum, which means there is a lot of different types of people who live with Autism. Some people with Autism cannot speak, others can speak in huge informative educated sentences, and some just 4-5 words. A person with Severe Autism will (more than likely) have a diagnoses of a developmental delay as well, where maybe a person who has Aspergers may have an IQ higher than anyone in my family! Spectrum's can be frustrating; but for a newly diagnosed family, it is hope.

I was upset today when they told me Owen was delayed; but the kicker is Ryan and I have known for a long time this was coming. When I think of the word, "delay" I think of Severe, I think of places like Community Living and Bethesda; I think of no help and no future, is that fair for me to think like that, but it is all I know? To me, delayed is a stop sign - its an end.

No, I am not happy. Yes, I am frustrated, hurt, guilty, and scared. Autism and Special Needs is hard enough; why is it every time we get up we are knocked down again? Yes, you can preach to me that our family can handle it, Owen will rock - and I believe it, but I am going to be honest (and you Special Needs parents out there will agree) it is A LOT of hard f'ing work! It is a lot of time, it is a lot of patience, a lot of support, a lot of love, a lot of tears, and a lot of wine - but after a couple days of giving myself the time to mourn like I have done in the past; I will get up again and face this head on, like the Autism advocate I am.

We have goals laid out for Owen posted on our fridge to make sure he succeeds and he will be able to have another 6 months at Bethesda, we have IBI in our corner to help us with all these transitions, we have support from family and friends, and most of all - Ryan and I have open communication.

But I am not going to shit you, this is hard.

Prayers and love always appreciated.

V Xox

1 comment:

  1. As always my friend, you are one strong individual. You give so many people hope, and encouragement. Let me take this time, to give that back to you, and offer you a shoulder to cry on, to lean on me. I am here if you need to talk, cry, vent or just drink wine. I know that at times I don't understand completely what you are going through, but the imagining is enough to understand how much your heart must hurt.

    I am here if you need ANYTHING.....always will me

    Stay Strong, you're a FIGHTER!!

    Nicole xo