Bex isn’t really a cuddler, so when he wants to sit in my lap and hang out for a while, even if he is picking at his toes, I have to stop and soak it in.
Category Archives: parenting
Apparently the holiday excitement was too much for some of our family members. You know that saying about being so excited you could just burst? Well, if you are a stuffed dinosaur, it can really happen.
Poor Mr. Blue required emergency back surgery late last night as he had busted a seam and was spilling his fluffy white innards all over the wee man’s bed.
Though he was a little pensive about the lack of anesthesia…
…he managed to power through and stayed remarkably still for his sutures.
He didn’t care for the itchy bandages,
but all was forgiven once he was returned to his rightful spot in the bed.
It’s about time my minor in stuffed reptile surgical techniques came in handy.
Referral Day! December 2006.
12ish December 2007.
11ish December 2008.
11ish December 2009.
11ish December 2010.
Happy referral-versary Beckett Long!
It was four years ago today that we first heard his name. The next day we would see a picture of his face. Six and a half months later we would actually meet. If you want to take a nostalgia trip, click on the past year pics above, or the links below.
Four years ago today, our dear friends Rob & Tricia were in Vinh Long, VN meeting their oldest son. Wanting to get a pic of the woman who ran the place, T snapped these pics. At the time, she didn’t know who the little dude was. She was in Vinh Long around 12/8/06, and we received our referral on 12/11. Crazy, right? She and I would discover him in her photos months later and realize exactly who was perched on that lap. Though they weren’t the first photos I saw, they have a special place in my heart because they were taken by someone I know. Somehow knowing that a real person had stood in the same room with him, shared the air, heard him coo, and then took a photo, well, that made him seem real too.
On 12/11/06 we received our referral info. The next morning we saw our son’s face for the first time.
We were lucky to receive a number of photos as we waited, including this one, taken a month to the day from when we would receive our travel clearance. Bex is posing with another Dillon Mom, to whom I will always be grateful for loving on my babe and taking the time to capture it on film.
The same family took two of our other favorite photos:
Oh… that pic still slays me. B and his main Nanny. Love. LOVE. I so wish I knew her name. He loved his nannies, and her in particular. As we arrived to take the kiddos to the giving & receiving ceremony, she pulled me aside for a chat. She gave me a hug, pinched the back of my arm and said, ” VERY fat. Good life. Baby same”. It will likely be the only time of my life that someone will say such a thing and not mean it in a disparaging manner. When we left for the G&R she waited until she thought I couldn’t see her and then collapsed into a sobbing heap on the floor. Just thinking about it still makes me cry. I am so thankful for the people that cared for my son while he was with them. I know it is a hard job, but I hope they know that their charges have found forever families in no small part because of the care that they gave.
As fresh as all of those emotions can be, sometimes it is hard to imagine that it has been almost four years since we first heard his name and saw a picture of his face.
When you look at my child he is fine. Despite significant motor challenges with good old “righty”, the casual observer would never know that there were challenges in play. The random person in the grocery store will brush off his lack of verbal responses with “Oh, he’s the strong, silent type”. People who don’t know us don’t see our challenge, and those who do know us don’t really get it. See, that’s the rub with a speech delay like B’s. There are no 2000 man walks, no national ad campaigns, no t-shirts to promote a cause. It is easy to dismiss things that you cannot see. It is easy to ignore silence.
So easy, in fact, that I frequently feel like we waited too long to ask for help. I kept convincing myself that the words would come, afterall, his cognitive ability was never in question. I thought that I was the issue. Maybe I didn’t engage him enough. Maybe I should narrate myself more. Maybe it was me.
Way back when, I was naive enough to believe the well meaning pediatricians who said that I was overreacting. I believed their experience instead of my gut. No, I don’t have a medical degree, but I am the mama. I am. Me.
Way back when, I thought that our suitcase style speech therapy was adequate. I believed that vocabulary was key. I reveled in each new word, but grew frustrated that identifying a kite or a bike did exactly nothing to help with our daily communication failures. I used to think that a speech delay meant a cognitive issue. I used to think that all speech delays were the same. I used to be grossly uneducated.
Now I know that my kiddo needed more. Now I know that there are too many possible diagnoses to name them all. B has a friend with selective mutism, another with apraxia, and still another with PDD. Among the possibilities suggested for the dude: Atypical Apraxia of Speech (meaning without Autism), Auditory Processing Disorder, and several extremely rare genetic disorders that involve speech motor planning.
We’ve had countless tests to explore any connection between his speech issues and his motor issues. Despite suggestions of Cerebral Palsy, his MRI was as perfect as they come and no physical connections can be found.
Way back when, I felt like I needed a diagnosis. I was hellbent on finding answers and it all became too much. I felt like I couldn’t fight back unless I knew what I was fighting against, and I let myself fall into an unpleasant place. I was having anxiety attacks. I’m pretty sure I was teetering on the edge of full on clinical depression. I was confused, and sad, and I felt like nobody, not my family, not my husband, not my friends, NOBODY understood my perspective. See, that’s the trouble with invisible “disabilities”.
I share this because I don’t want others to feel alone.
I share this because I don’t want others to be consumed by their child’s challenges.
I share this because I want others to know that the services to help our children DO exist.
I was scared, and I was lucky enough to find a support system. I banded together with the few folks I could find who had kiddos with similar challenges and together we figured out how to work the system. Together we explored therapy options ans preschools, and now we are embarking on the journey to elemtary school and all of the unknowns that may entail.
Because of these friendships, I no longer feel alone. Because I these friendships I feel understood. Because of these friendships, my child is receiving what I believe to be the best possible therapeutic & educational services for his needs.
Lately I have been approached by people who wandered across my blog and are looking to get help for their kiddos. Though I am far from an expert, I can at least help to navigate the system a little bit, and help those who have a need to find the resources they seek.
That said, if you are a parent who has a non-talker and wants to talk about it, drop me a comment and I will respond. If you are worried that your child might need a developmental evaluation, know this: You can request an eval from a provider even if your pediatrician thinks you are overreacting. It is always better to do an evaluation and find out that everything is fine, than to think everything is fine only to find out later that intervention was needed.
I wish we had done our initial assessment much sooner than we did. Bex has worked very hard and made remarkable progress but I can’t help but wonder where his communication skills would be today if we had started therapy earlier. Click here to see what is available in your area. If you think that your child may need services I urge you not to put off calling for an evaluation. It is difficult to make that first step, but in the end you’ll be glad that you did.
This was the dude with his lion friend in September 2008.
This is him sharing the love today.
Just in case you ever needed proof that he had grown, that should do it.
Speaking of lions, we saw one spend at least ten minutes playing with a pumpkin. It was like this huge creature was suddenly a frolicking little kitten. He wrestled it, he washed it, he kicked it around like a soccer ball, and then he used his giant paws to wrench it apart only to be totally disappointed by what he found inside. Kind of made us wonder if they took part in the same kind of behavior in the wild, but with the parts of some unfortunate gazelle or something. Gross, I know.
One more, just for fun…