Monday, August 2, 2010

Searching for sameness

I've never spent more time searching the internet. It's probably equivalent of the time I spent when the internet was kinda new and I was über-young and there were "chat rooms". There are still chat rooms, but back then it was hip to be in the chat rooms. AOL charged by the hour and I would get these ridiculous bills because I'd been online averaging 3 hours a night!! :) Clearly, this was before I knew what being busy was. Nowadays, (Ha! Did I just say nowadays?? I think I just aged 20 years and hiked up hill both ways to school...in the snow...)I spend hours searching for people like me online. I have a baby who has Down syndrome. How did I end up with a baby with Down syndrome? I am so very, very lucky because the people I surround myself with are open-minded, honest, comfortable with differences, and seriously the coolest-people-on-the-planet. And yet. They don't know firsthand what it's like to raise a child with Down syndrome. So I peruse the internet. Looking for people like me...only I don't necessarily know if I've found people like me yet, only people who have like circumstances. I'm reading a great parenting book called, "Parenting Without Power Struggles" and in it, the author talks about 6 stages of attachment- 6 ways to create a strong and lasting bond with your children. They are: Proximity (spending time with your child), Sameness (finding commonalities with your child), Loyalty (demonstrating that you 'always have his/her back'), Significance (cherishing the sense of specialness and importance of your child), Love (showing affection for your child), and Being Known (an open and honest communication existing between parent and child). The author describes that all close relationships share these attachments. I feel that this is true and that got me thinking about what I've always looked for in my friends. Right now, because of our circumstances with Eli, some of the "sameness" quality has shifted a bit with my current friends. It hasn't shifted so much that I don't relate to them, or anything crazy like that. It's just that I have this longing to have that sameness with someone who knows. Now that I'm 3 months into this journey I'm starting to figure out how to connect to people who also are on a similar path. Just like any "sameness" quality- it doesn't automatically mean that we'll be lifelong BFFs. Just because I bonded well with other dancers that I worked with along the way, I didn't become life-long friends with them all...only a select few. The coolest thing is that I'm starting to make connections, and friendships are starting to develop and it's really NICE. It's nice to have some people I can go to and say, 'I thought this was great, don't you agree? Or, I thought that was really tough, do you know what I mean? And they DO. I even met someone who knows someone I know, who likes exercise like I do, and who goes by a screen name of Sunshine. How great is that? I don't think it's going to be possible not to like someone named Sunshine! :)

I recently decided to put off my fears of some looming speech catastrophe for Christian, because we were supposed to have our Speech Therapy evaluation on Friday. Turns out there was a huge miscommunication and he can't be evaluated at this time!! I'm so irritated...mostly at myself for not making absolutely sure I was understood. So, now we're back to square one and I have to start all over at finding a good speech therapist who is local and not going to charge us our life savings to have him evaluated. (Who am I kidding? If they charged us our life savings, it might as well be free!!) Sigh. Although, I feel like Christian's speech has been improving and exploding even more in the last week. The only thing that I've noticed consistently is some word retrieval issues. For instance, if I ask him to point to purple, grey, brown, silver, a platypus, a toucan and a zebra, he can do it with 100% accuracy. But, if I point to the toucan and say, "What is that?" He'll pause for a long time and then say, "I don't know. What is it?" It's not with everything and it's not all of the time. The rest of his speech seems pretty intelligible, though he does exchange some sounds for others. He can create the sound if I work with him, but then goes back to his habitual way of saying it. Bottom line: I'm getting less and less concerned and if I don't find a reasonable speech therapist to assess him now, I'm not gonna stress. I'll wait until he's in school, around his peers, learning more each day and see what happens. I have to remember that he is only three.

As always, Elijah is GREAT! He's not as strong or as skilled as most babies his age, but he IS just as sweet and adorable and cuddly. Charles happily takes him at night, lays him on his chest and they both crash out- Charles snoring loudly and Elijah blissfully unaware of the train-loud snoring. If only I was so blissfully unaware...(Sorry, honey. Nothing against you. It's the snoring that I'd take out if I could.) :) Today has been a really good Mommy and Elijah day. He was doing so well on his tummy today. If I assisted him in keeping his arms propped under his chest, he was holding his head nice and high and checking everything out. Then later, while Christian was coloring and showing us each. and. every. single. color. he. was. using, I was getting the biggest smiles out of Eli. I could cry because baby's smiles are just so JOYFUL, aren't they?!! It's actually hard to stay unbalanced about life when I'm smiling and cuddling with either of my boys. I think that's going to be my secret weapon. Speech therapy appointment gets cancelled? Scoop up my 3 year old and give him the biggest of big bear hugs. Worried about the future that Down syndrome will play in my baby's future? Scoop up said baby boy, stare deep into his eyes, and forget everything that's not AT ALL important when he gives me that one-eye cocked grin that stretches from ear to ear...




4 comments:

Tara said...

The internet became my best friend in Eon's first six months! I have found the Down syndrome community at babycenter.com to be a huge resource/support/blessing, if you haven't already found them. I have found some "e-maginary" friends that I think will be lifelong. Just an added bonus of the extra chromosome! :)

Laura said...

As usual, great insight we all can relate to and seek out for ourselves. Those of us that don't have your exact circumstances understand your need to find, belong, relate, confide, relax into your new community. There are no two ways about it, we can only come so close to fully empathazing with whatever you are experiencing. But we love you, support you, appreciate you and admire you for facing life's challenges head on with a smile and open heart. Make new friends, but keep the old....

Melissa M said...

Hi Jen, Thanks so much for leaving me a comment! I always love finding new friends to follow along with. The internet has been a lifesaver for me since Claire arrived. We live in the middle of nowhere and all of my T21 friends are online. While my IRL friends are great, it's soooo nice to have people to talk to who really GET what I'm going through. And like Tara said, the babycenter board is GREAT!

Anonymous said...

Sounds like vocabulary is fine--toucan for a three year old! Wow. It's certain sounds that develop by certain ages (I think) and some aren't until six years old.

As your counselor but I suspect that the regional center would do the assessment maybe?? With the referral by the pediatrician and of course in the old days of not using insurance first, but be sure to ask. The regional centers have speech therapists on staff-- or ours has one and not that they might err on the side of not needing it in a less than ideal world....

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