Time Out for Teething

I apologize for my absence. The government shutdown has led to an increase of family time (gotta be an upside somewhere in this mess!) and then LB started teething like a monster! AND she's trying to crawl. So while I've been thinking of you all and trying to keep up on my blog reading...this is what we've been working on. Hope you're well. Post or send me a message how things are in your world!

3/21 Community Blog Hop

OH MY...I am so late in doing this but I think it's absolutely lovely and want to be part of something I think is so great...so here's to hoping I get this right! Here is my: One Truth, One Tip and One Picture - part of the blog hop, a community project of Down syndrome blogs and T21 Alliance. Wonderful, fabulous, uniting brilliance.

One Truth: I am a control freak and Down's Syndrome is a control freak's kryptonite. I am in utter fear of the variable illnesses that could be lurking in LB's future - but then I remind myself that any mother could have these same paralyzing fears...or they could roll in the beauty of the child before them and soak it all in. I am trying my best to do the latter of the 2 options.

One Tip: Take some time for yourself. Burn out happens for a reason and then you can't be a good or healthy parent anyway.

 One Photo: This is an image from a 3D ultrasound we had done at 24 weeks. No, we didn't hear of or notice any signs of Ds at this time. We were busy enjoying the pure 'tude LB gave the tech after bumping my tummy to move her around - she pointed right at the machine!

Just Beachy

Hubs makes fun of me often, in jest calling me "Captain Safety". I'm the worrier. Trying to always be steps ahead, trying to make everything perfect. I just read an article on Huffington Post (http://www.huffingtonpost.com/kate-bartolotta/happiness-tips_b_3956114.html?ir=Parents) about dropping all the bullhockey and just be happy. Now. Being "Captain Safety" and all, this article got me thinking: Does becoming a parent = the end of anything carefree? Does becoming a parent to a special needs child take years off my life with worry? Are we ever going to be able to drop the bull and just be happy...NOW? I have the never-ending guilt following me, like a creeper, telling me: "You should be researching/reading/watching more ways to help her. Make sure your baby is safe." But sometimes, rarely but sometimes, you have to drop the researching/reading/watching and just enjoy the view.

Sunday Rainy Sunday

Weather that encourages sloth-iness. Down pouring, car wash like rain that makes you wonder when nap time is coming up. A good day to get the weekly grocery store run out of the way, get chili brewing on the stove for a comfort dinner tonight. Hubs is traveling again this week, so I ran to the store so he could enjoy more time with LB. My trip to the store was uneventful, others in rain coats, scouring the aisles with crinkly paper lists in hand...looking perplexed..finding themselves in the wrong aisles, again. I was glad to get this errand out of the way, so I could return home and continue to participate in the family sloth (except LB who is Ms. BusyBody, playing and trying to crawl). I was in the kitchen unpacking groceries when I hit "the wall." Hubs caught the glitch in my voice as I was rambling about something else when the words escaped me:

 "I don't want people to stare at her." 

I don't. I want people to mind their own business and only be able to see the beauty that we see. I know I'm not alone in this. It's part of the adjustment you go through raising a special needs child. It's the protective-bear-mama that rages against the adjustment and the wimpy-cry-in-the-corner mama that never wants to leave the house to avert the hurt. I'm finding myself somewhere in between on a good day. 

Fight & Life of Therapy

Last night my Hubs and I were talking about the fight we just won to get a referral for LB to get access to speech therapy. The fight/advocating for her to get to speech therapy was exhausting in itself...now we won...now we will be part of 2 types of therapy: OT & Speech (and that's as of this minute).

All this is exhausting!

I've found that there are 2 schools of thought for Down's Syndrome and early therapy's effectiveness. I have full faith that the sooner you can get your child into therapy, the more productive, happier, independent adult you will have later in life. And why not? Why would you not give someone the opportunity to soar? (Leads me to the tshirts Kelle Hampton just blogged about yesterday: http://www.kellehampton.com/ for more details). Back to early therapies...why would you not support any assistance humankind can offer? Our pediatricians simply didn't want to put their name behind the referral...because "she's not speaking yet." Which is what the other, older, school of thought for early therapies is: just wait until they're in preschool and then submerge them in everything at once because they don't need it before then. I'm going to cut out of this before my blood pressure goes back up...you know what I'm getting at and if you find yourself in this same situation FIGHT! You know what is right for your child. Do your research and then make copies of all the national medical groups/boards/professionals that support early (as in before 3) therapies and the drastic difference it makes in lives - and take that info to the medical professional that is not supporting you. Politely, respectfully present your case for the manner you would like to proceed.

Back to the conversation Hubs and I were having about all this last night. Our talk turned, again, to single parents and/or double parent families where both work full time. How do you make this schedule work with all the ELP, OT and SPT appointments? Good Lord, we're not even seeing a PT yet. I am amazingly lucky at this point in my life that I am able to work from home but I also know this is not likely a permanent stroke of luck. This is on my list of items I know I can't worry about now - trying to be present in this time. Worry when we get to it. Jennifer Bekins, Speech-Language Pathologist & Blogger of www.http://talk-ds.org/ just posted a new article about "Therapy Burnout and Parent Guilt" - very timely posting and I highly recommend following both blogs mentioned in today's posting.

Any Ordinary Wednesday Birthday

As I typed the header for this one, I laughed - remembering my hubs telling me one time "My birthday is ALWAYS on a Wednesday." He was serious.
Well this year, my birthday really did fall on a Wednesday. A Wednesday in the middle of my first week being a single parent; hubs is working on a different island until this weekend. Let me state right here, right now...I have absolute respect and no idea how anyone gets through being a single parent in a sane manner. And my baby sleeps well.
LB's monitor started chirping 6 AM as usual (don't be mad at me, I know I'm fortunate) and I clickety-clacked out of bed before I remembered that this day is my birthday. Maybe that goes with age as well. Not until I got to my morning coffee did I get it as I tried to reflect on how I was feeling last year on this same day while I was still carrying LB in my belly. Before we knew. Before the letters D and S come to mean so so much to this household. Before I met my beautiful, willful, little girl. Before the emergency C-section. Before the battleground of baby toys claimed my house. Before I smiled and cried more in 6 months than any other time in my life. Before my family bonded and became stronger than I ever thought we could be. Before I broke. Before I started learning not only how to be a new parent but how to be an advocate for my child.
Before I started this blog. Before I met you.

Down's in the Middle of Nowhere

We met with our Early Learning Providers last night. The 2 staff we have working with us is our case coordinator and an OT. The OT has been great in helping LB correct her posture in holding her head straight after she leaned severely to the right (Torticolis) and more recently we're working on core strength to start sitting up and using both hands in reaching. LB wasn't aware that she had 2 hands at first!
My main concern for LB's overall being/development has been her strong tongue thrust. What I've learned about tongue thrusts is that they can heavily affect eating and speech development - both very important, I think, to a thriving life.
Unfortunately we have learned that we do not have access to a speech therapist (we live on a remote Alaskan island). Even if we could pay out of our own pocket - there simply is not a therapist accessible until LB starts preschool and can see the school therapist. So I have undertaken learning what I can to help my lil - I don't see that I have any choice at this tine. Our Ped doesn't think there's any reason to see a speech therapist before the child is speaking...what if they don't start speaking...when do you go then?
I'll share with you what tools I'm trying and what results we're seeing. To start, I can share this:

• Watch "Developing Oral-Motor and Feeding Skills in the Down Syndrome Population" by Lori Overland, M.S., CCC-SLP
• Lengthy but Ms. Overland does a great job discussing proactive advocacy, plans of care and the 2nd disc she details actual practices and tools she uses to help muscle tone and oral-motor feeding skills.
• Ordered Toothette Individual Swabs - Foam/sponge topped lollipop sticks. Using these to improve lip muscle tone as shown in the video listed above. 
• Ordered Philips Avent Natural Drinking Cup. In pink of course. I've been advised to steer clear of sippy cups.

I've also tried the Zolli stick. This was first suggested to me to "poke" LB's tongue back in her mouth when she was sticking out her tongue. This caused her to giggle and then stick her tongue out at me further...so we dropped that. I've held onto it, just in case it may come in handy in the future. There's no telling in this wild ride.

I'd like to also mention, I am not endorsing any products I discuss on this blog. Simply sharing my experience, hoping it is helpful. PLEASE share your thoughts/ideas and what you've learned along your own journey.