May 11, 2011

an update on kellan

108a

So we are there again....that word. It's hard for me to land in a place of how I feel about it. Part of me is in total acceptance and then when I think about the real world implications of how this could affect my son. Its hard. If I think too much about how socially and emotionally tough this could be on him once he and his peers are at an age of awareness regarding his differences...I just cry.

Today was Kellan's IFSP...basically a meeting to talk about his goals, where he is at and what we want to work on for the following year.

I am happy to say Kellan has made incredible progress in his expressive and receptive language and this is so obviously apparent to all our friends and family. In fact his progress was so hopeful that the idea of autism or spectrum disorder had almost escaped my radar as something to consider for our future. Then, on the other hand, I was just telling Derrick the other day that I felt that when we should see things smoothing out for Kellan (and a lot of things have) there are more bumps in the road cropping up. Like how our son lives in an incredibly literal reality. How eye contact and social queues (more of the subtle nuances of social queues) are not on his radar at this point. How it is becoming increasingly obvious that Kellan is dealing with sensory issues.

Again.

Tears.

When I think that my son may deal with teasing and kids excluding him it really breaks my heart. I used to be afraid that he would suffer academically, and ironically his teachers have noted how Kellan is incredibly intelligent and that often we sense that there is so much more going on than we give him credit for or that he is even capable of expressing at this point AND I believe this with all my heart....but my mindset and concerns have shifted (more because of some personal growth and honing of values within myself) and my major concerns are his ability to have friendships and positive, rewarding relationships with his peers.

At his meeting today I asked, "Are we getting to a place where we have a label for Kellan, i.e. autism, aspergers syndrome, pervasive developmental disorder (the later of which is what kids get when they really don't have a label but the child is obviously dealing with delays, or inabilities)" At which point his teacher commented that he was glad I had taken the conversation in that direction because they were unsure where Derrick and I were with that (which I think meant they weren't sure how we would take it...hearing that word, the possibility of it etc), and I told him that I was completely open to their opinion as professionals and that it has been on my mind since he was about 2. They talked about how sometimes they see real signs of the above mentioned disorders, and then other times they think Kellan is really engaged and reaching out socially with his peers. The overall feeling was that Kellan fell into an extremely gray area and that they felt observation by an autism specialist would help them hone in on his issues and shape his goals so that we can work on what is most crucial. I think they were avoiding talking about a label or diagnosis, but I told them I was completely willing to go there.

I am in and have to be in a place where I accept that my son is going to be who he is, and I love that person, whatever it ends up encompassing...I love that child with so much of my heart. All I can do now is help him be the best Kellan he can be, and if that means a diagnosis...then that's what it means.

But I am still absorbing it. The idea is set. We are in acceptance of things. But it takes time to completely absorb it into your being, and I am personally in the middle of that process.

This also brings up bigger questions about what this means for my life and career path. My son may need more attention than a mom going to school to be a P.A. can give and so I am slowly trying to introduce the idea of setting that path aside as a possibility. That's painful, but necessary. What is our life going to look like in the next couple of years? The picture that was developing in mind is now fading and the idea of something entirely different is emerging. Also unknown is the kind of services that will be available for Kellan. With budget cuts and the complete lack of funds in almost all the school districts in our area we may be going completely private and trying to navigate helping him without the opinion of professionals that see him on a regular weekly basis. This means Derrick and I will have to become the drivers of this vehicle.

*sigh* my heart is so heavy with worry, and yet I am so very thankful for the gift that Kellan has been to my life. I was given the boy I wanted so desperately and he is so perfect for me even in his imperfection...and I see this as a lesson for me...to be so thankful for what I have, to not always expect things to be perfect but to embrace and love that imperfection. and I do. I really really do.

So our adventure continues, one small aspect (seems big right now though) in the bigger picture of our existence. And it begs the bigger question of "What is the good in this, and how am I going to use it to make a difference for others?" I am mulling that over too. Right now I feel like my biggest purpose and contribution is to give my kids quality time...to speak their love language to them...to provide security...emotional security...to do whatever it is that says love to them...so that they feel loved.

Its a lot to consider. In the meantime I want to say that I appreciate all the love and support our friends and family continue to give us. Thank you so much.






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5 comments:

Jeremy said...

I can't imagine a more graceful and poised response to a situation such as this. Thank you for giving me perspective in my own trials and tribulations.

maryfdennis said...

Jana, I had no idea about these issues with Kellan. Thank you for making sure I received this communication. I have a niece (my brother Don's daughter who lives in Eugene) with Aspergers syndrome. She is in 9th grade. She is brilliant. It has been a real journey for them. Rachel is a very interesting girl and has been able to make friends and participate in activities in school. She has been in the public school system in Eugene where they have had pretty good luck with special programs.

Aunt Mary

Anonymous said...

Kellan is very lucky to have a mother like you. No matter what he faces, he come out ahead with the support that you and Derrick provide.
- Cousin Tracy

Anonymous said...

Jana - I had no idea your family was dealing with this. All I see when I look at your family is love. Thank you for sharing your graceful and open approach to parenting. You will be in my thoughts and prayers.

Kate McG

Annie said...

You are a wonderful mom... xoxo Kellan