Tuesday, October 25, 2011

Questions answered

These questions were posted or emailed last week. I am just now getting to the point where I could answer all of them...hope these responses are sufficient!

1. Do you get any special insurance because Addison has DS? Does your state support you financially? Do you have to pay for all the special therapy Addison gets?

Vermont provides a Katie Beckett Medicaid for children with special health needs like Addison. It doesn't require you to fall under a certain income bracket. It just helps cover all of those extra expenses that regular insurance don't cover. Between two insurances, all of Addison's surgeries and such have been 100% covered for us. I believe they also pay for her therapy. Early Intervention organizes her team of therapists, but they bill it to the KB Medicaid (because regular insurance wouldn't pay for it) We have 4 therapists come every week to our house (for separate appointments) and we don't have to pay for any of their services. I can't even begin to tell you what a blessing this is for us.

2. I am wondering how you fit in all the therapy and keep your life balanced. Also you had mentioned music therapy - I was wondering what you do and what advice you have for someone who does not have much of a musical background. It sounds like it would be beneficial for both my kids!

First of all- staying balanced. Honestly, the only way I can keep up with her appointments and still feed Carter (who ALWAYS seems to be hungry) is with the help of my PCA. She comes 4-5 mornings a week from 8:30-11:00 and I have all of the therapies scheduled during that time slot. That way, I don't have to attend every therapy session- or I can duck in and out as Carter needs me. I try to attend each session fully every other week, but on the off weeks, I run errands or take Carter out in the jogging stroller for a run. It's the only way I've been able to stay sane.

Second- the music therapy. Honestly I keep it very simple right now for Addison (even if you're not musically trained, you could still do this). I find that she needs repetition. LOTS of it. So, I chose a book that includes 10 songs all which feature important skills- counting to 10, naming body parts, the ABCs, the days of the week, etc. It's called Take-Along Learning Songs and it comes with a sing along CD. We sing through this book EVERY NIGHT right before she goes to bed. Sometimes we tap or clap along to the beat, sometimes we dance along, sometimes we break out her drum and let her play along, we ALWAYS sing along, and we learn different signs to go with the songs. Basically, she loves, loves loves this music time and the familiarity she is now getting with each song. She will carry the book around with her and look through the pages for hours and dance- even when the music isn't playing. She associates music with the book. Even though she's not counting to 10 or able to say her ABCs yet- I know this repetition will make a huge difference on her future learning. (We've been doing this now for about two months. She has started to do quite a bit of singing on her own...as well as accurately tap out the beat.) As she grows older, I'm sure I'll expand into more therapy like activities, but this seems to be working for her right now.

3. I wondered if you could answer a question about having a baby after having a baby with Ds. I have always wondered if it would heal me, to have another baby - assuming that baby was typical of course. Did you find it a healing experience?

This is very interestingly worded- "a healing experience". As odd as that might sound, I totally get it and my answer  depends on whether your baby with Down syndrome is your first baby or not. I think this makes a difference in the need for "healing". Of course I can only speak from one side of that, so maybe I'm wrong (feel free to correct me if you're on the other side of this). But Addison was my first baby and I definitely felt like I needed to be healed. In no way was having her a normal first time mom/baby experience. Everything went wrong, and as soon as I finished pushing out Addison, I knew that I wanted another baby right away. The whole experience left me craving normal. Don't get me wrong- I love Addison and I'll always treasure those first few months of her life, but I also felt like something wouldn't be whole in me until I got a chance to do this all again- without the grief and fear. Now that I have had a very normal baby experience, I would say that I do feel healed. I feel very content with my two children and feel no immediate need to have another baby like I did after Addison was born.

4.  How different was Carters pregnancy? Did you worry about tests? Did you skip straight to the amnio or did you not even take the amnio?

I can't even tell you how different the two pregnancies were. I didn't have any prenatal testing done for Carter. I said that if something of concern showed up on an ultrasound, I would then consider an amnio. I didn't want things like "1 in 70 chance" floating around. I wanted to simply enjoy being pregnant instead of being caught up in the throes of pregnancy horror. I never regretted my choice for either pregnancy. My first pregnancy I wanted to KNOW. My second pregnancy, I didn't want to know. I wanted peace and happiness. I knew that I would love my baby no matter what, so I focused on the positives and simply centered my attention on normal pregnancy woes instead of constant panic and fear.

5. So how is your book coming?

Ah yes, my book. The day I went into labor with Carter, I drove to the post office and dropped a copy of my manuscript into the mail to my agent. The post office said "have a nice delivery" which I found ironic. I emailed my agent and said that I was having my baby and wouldn't be able to work on my book for about 6-8 weeks but wanted to make sure that she had it so that she could get started on her edit of it. Basically, she is just now getting to the point of working on it and I am just now getting to the point where I could do something with her corrections. I am VERY anxious to get the ball rolling on my book, but am just surviving one day at a time right now, so it's probably best that my "break" is still continuing. My book is still very much on track to getting published. Just taking a very necessary break (which hopefully will be ending in the next week or two)

6. What is your secret to looking so young? Did you find the fountain of youth?

Well, I survive on a carefully regimented diet of coffee, chocolate and greek yogurt. I stay awake all night with an infant and just started training to run a 5K during all my free time. I do a million loads of laundry a day and chase after a very curious toddler who manages to get in trouble with every breath she takes. I watch too much Hulu while I'm pumping and feeding Carter- I write and take pictures almost obsessively- and I love to cook yummy food that my toddler refuses to eat. If the fountain of youth includes stress, exhaustion and a constantly stiff neck- then yes, I imbibe quite frequently. So glad I could share my secret...hope it works for you as well as it apparently does for me.

OK, fine- no one asked the last question...just looking for a channel to fuel my inner snarky self...


  1. I get a kick out of you! You have so much going on and I am amazed that you do as much as you do.

  2. The last question and side note were hilarious. The truth is that you DO look young, and positively radiant with your two sweet little ones around you. The fatigue won't last forever. I remember some days where I didn't even call my children by their right names, I was so tired. Mostly what I remember now is the joy of caring for them, and the pride and happiness in watching them grow. I hope you always enjoy that too.

  3. Thanks for sharing these details. You are one BUSY person--I'm not sure how you do it all!

  4. I've heard you mention your book... but I don't know what it's about. Excited to hear more.

    Cora is my first baby too (with T21 as well). Other than a rough first 3 months and OHS she's been healthy. I feel that at first I wanted to be healed and that having a typical baby would do that, but for some reason now I feel like I'm healed already. That said, I'm not sure what I expect or hope for for my second. I DO want another child, and I think it's more to give Cora a sibling to encourage her and support her but I wonder if that's all of it. Thanks for getting me thinking.

  5. Deanna, you're awesome! I love your answers to these questions! Except the one of how you manage to keep looking so young...I want another method for this result other than having another baby and taking up jogging! lol

  6. I loved this! They asked a lot of questions I wondered but couldn't think to write out. Thanks for being so open!

  7. our boy with DS had music therapy since one month old. really, he was just laying down listening to what others where doing (it was a group of 8 kids with special needs all of them 1 or 2 yrs older and mommas) with time, we began using bells tied to her wrists or shoes, and looking for some moves or responses to the music.

    then, when he was 6 months old aprox, he was sitting with support and beginning using some kids instruments.

    in these sessions, we had a 'welcome song' then 4 or 5 songs that went along with the theme of the month, like animals, or sounds, or motions, the body etc, and also the teacher played one song for them to try to follow the beat with the instrument (and so they could learn fast, slow,soft and hard) and at the end each kid could play a little on the keyboard.

    i truly believe it was very helpful as he learned too many concepts from music

    also have to agree about the 'healing' since our first son was born with ds, but i have to say that for us we knew healing didnt came from having a 'typical' baby, but from really embresing our son as who he really is, with his strenghts and specially with his weakness, we just adopted a girl also with ds. and people keeps asking if we will have another baby, who is typical of course, and when we say we are over with growing up the family they think we are crazy, maybe we are, but this is our life and this is how we healed

  8. Great Q & A! I think my need or want for another baby is so that I can leave the hospital on a happy note and be "healed" from Sutter's birth even though I had already done "normal". I don't want to drive by the hospital everyday and see the window of my room that I spent so many hours staring out watching the rain fall and trying not to cry. I want to drive by and have happy memories!


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