Thursday, January 19, 2012

Equality

After writing the last post, I started reading backwards through some of the entries on this blog. Each one brought back memories of the event or situation that had prompted the post. It actually made me wish I could find make more time to write. It's an important way for me to process and catalog my experiences right now. Every day moves so quickly and slowly at the same time, and the contradiction makes it blurry in retrospect.

One thing I realized (again) is that many times I write about Van. I don't mean to. It's interesting because my sweet girls occupy much of my time each day. They are growing and changing so much every day that sometimes they wake up and seem older than they were a few hours before. They are learning the influence they have on the world (me) with their words and their cries and their tantrums. Van's requests are simple and consistent.

"Mama, did I want some apple juice in my Lightning McQueen cup?"
"Mama, did I want to listen to dancing music?"
and lately
"Mama, did you want to play with me in my room?"
To which the answer is always, "Yes!"

I am going to make a concerted effort to diversify my subject matter, but the last two weeks have been a relief from an issue weighing on my heart and mind for a long long time.

Van has been unique his whole life. He hit his developmental milestones, but strangely. He skipped some like pointing, clapping, and later jumping. His pediatrician once said, "I have never heard a child with intonation like his." Vanny was less than one but would speak in full sentences of jargon. His nonsense words sounded so convincingly like language that people would often look to me to translate as if I could understand.

As Josie and Delia began to develop their communication skills (both verbal and non-verbal), concerns we had with Van deepened. We recognized the significance that Delia could follow my point and retrieve a specific object, but Vanny could not. He seemed to grow increasingly frustrated with his inability to express himself, and his requests and conversation seemed limited to a template of sentences that he would rearrange to fit his need. It's been almost a year since we started seriously considering the possibility of Autism.

When I mentioned my concern, many people would say, "He's such a good boy. He plays so well on his own. He seems to speak so clearly. Kids develop so differently, and you know boys just do things at their own pace."

He does play well on his own. But he can't relate to kids his age. He doesn't know how to join in games or even really parallel play. Kids at the park often come up and ask me why he won't talk to them.

After many appointments with Dr.'s who were completely unhelpful and uninterested in anything but the bills we received, and after many nights of taking turns in tears worrying about how we could help Van live a full and meaningful life, GK and I finally feel like we're making headway.

As the daughter of two public school teachers I know the complaints about the public school system. But luckily for Van, our school district has provided unbelievably thorough evaluations and testing. Meetings with Psychologists, Occupational Therapists, Physical Therapists, Speech Therapists and Special Education Specialists.

After two weeks of Early Intervention Preschool, I'm seeing parts of Van I wondered if I ever would. I honestly go to bed at night wondering if I'm imagining things or if he really could be making as much progress as I observe.

10 comments:

Amberly said...

Oh, Sus. My heart hurts that you have been going through these worries. Unanswered questions always seem to be the worst kind. I'm grateful you are finding, if not answers, at least a measure of peace as heaven shows you glimpses of, "it will be ok." Praying for you and your sweet little boy, who is beyond lucky to have you as his mama.

MARTHA said...

I love you. I'm praying all goes well in your quest. My doctor, as I voiced concerns about my Becky, and then as we began to find answers, he said, "You will be her greatest advocate." That has well been the case. Your Van, and your girls have been placed in your home. Heavenly Father knew you would give them the best of care and what you are doing now is part of that. The best to you, truly.

Teri said...

I just love you guys. My heart is so full to hear of you talk of your children. Thank you.

seven smiles said...

first, congrats on baby! :)
second, having other children hit milestones that another does not IS worrisome and sometimes painful and almost always filled with angst and anxiety.
(At least for me.)
I am still trying to figure things out and have no real support group.
Vanny is SO lucky to have you and GK as parents. Lucky and blessed.

thinking of you all. xxoo

(+Lisa is a good resource for knowing what to ask for from your schools.)

annie said...

Susanna,
Your little ones could not have asked for two more loving, attentive, caring, wonderful parents. Thanks for being so candid about your life. Please continue to tell your story on this blog. You have a gift. I wish more people were as genuine as you and GK.
I miss you.

Rebecca Lang said...

Van is so lucky to have you and GK there to create a rich and loving environment. I hate facing the unknown and I can't imagine how difficult it is to be grappling with questions that don't have easy answers. The upside is that you're both amazing parents and Van will be alright for this fact alone. We're sending very supportive thoughts your way!

Dad Risser said...

Beautifully expressed. I wish I had your wordcraft. He's a beautiful boy.

Jaclyn said...

I love you guys! I'm so glad you are finding help and answers that have brought peace into your life. Your children are so special and beautiful, and blessed to have you as parents.

A and M said...

You and GK seem to be wonderful parents, I admire your strength in more ways than one!
Congratulations on another sweet little boy, you have such a beautiful family. I hope your questions and concerns with Van will be answered soon.
Our nephew was diagnosed as being "high-functioning" autistic when he was 2. He is now main-streamed in 1st grade and having play-dates with classmates. It's been a long road for Adam's brother and his family but miracles do happen!
Best,
Melissa Marquis

Amy said...

Susanna! First it was oh so wonderful to bump into you inTarget that day just before Christmas. I miss you and so wish we could have overlapped longer in Davis. My heart goes out to you and your sweet adorable family as you adjust to the newness of Vanny's diagnosis. A silly quote has always had a wonderful calm on me in both "little deal" problems and "big deal" problems alike (as we term them in our home) and it goes like this; "Everything is always okay in the end. And if it's not okay, it's just not the end yet." It just helps me remember that someday down the road, however far we don't know, we will see the reasons and blessings for everything that happens in life. You are a wonderful Mom. I've seen you in action. That is the best medicine your little guy could ever ask for. Love you lady.