95 Seconds

Rex does not like to color or scribble or do anything functional with a writing utensil in his hand.  So, his OT goal is just to get him to build up tolerance for this type of activity.  Today he brought home this completely wonderful picture from school:

And on the back is says:

Go Rex!

A Little About My Life In Someone Else's Words

'I am strong. Do I have a choice?' Moms of special needs kids are #DoingItAll, too

Kavita Varma-WhiteTODAY contributor

For moms with special needs kids, the task of “doing it all” is an even more daunting one.

In addition to the normal stresses of parenting, they bear the emotional and often financial strain of being an advocate for a child who needs more. And many of the hundreds of women who wrote to Maria Shriver and TODAY say it’s the most exhausting challenge of all. 

This week, Shriver and TODAY are highlighting women's stories and their financial struggles in a series called #DoingItAll, culminating in a "help-a-thon" on TODAY Wednesday; in the meantime, TODAY Moms is asking moms to help each other with some of the most common challenges women face as they try to take care of everyone and everything in their lives.

Cindy Findling’s husband died, leaving her and her two children, one of whom has autism. Findling says that like others in her position, she struggles to find enough time and get enough help.

“Getting enough support in school or out for the daughter with autism, providing them both with the support they need to grieve the death of their father, and juggling the financial and logistical realities of running a business…People tell me all the time that I am strong. Do I have a choice? I don’t think so,” Findling writes.

For Jennifer Gratzer, mom of 3-year-old Mateo, who has many disabilities, it took some time before she accepted that “I am not a sleep deprived, brain-dead, exhausted woman because I am a slacker…it is because I am CEO of Team Mateo, and our team grows daily.”

From her family’s experience, Gratzer has identified several areas where all parents of special needs kids could use help. They include the need for more daycare providers, babysitters and caregivers who can take care of special needs kids so their parents can take care of themselves. Writes Gratzer, “I would truly love to be able to have a massage or a doctor’s appointment without having my son in the room. I have a wonderful sister who helps out, but I try not to call too much for fear of burning her out.”

Gratzer says she would love some kind of centralized information source, “so we can get and give advice, recommendations and warnings without spending too much time searching the Internet.”

Finally, Gratzer says families with special needs kids need the acceptance of strangers. “I work every day to make my life and my son accessible to others. I see that pause and that question in people’s eyes. I know it’s curiosity and discomfort at not knowing how to interact, so I usually open the conversation for them.”

Psychiatrist and TODAY contributor Dr. Janet Taylor says parents with special needs kids are themselves a special group. “We don’t acknowledge the extra burden and energy required for a child with special needs, the extra energy into medical worries,” said Taylor. “When you are in that position, you do truly feel like you are the only one who can take care of them.”

Taylor says it’s natural for parents to have frustrations, but that’s a sign that you need extra help. And there is help out there, whether it’s other parents who have navigated similar waters before, or school counselors or healthcare providers.

She adds that parents of special needs kids must acknowledge that their own emotional health is key to survival, so they shouldn't discount seeking therapy.

We asked TODAY Moms on Facebook to share the advice they have for the challenges that come with raising special needs kids.

Many responded that support groups – whether found in other families who share the same situation, schools or online communities – are a life-saver for beating isolation.

Stephanie Campbell Headley’s 12-year-old twins Zoie and Bailey have Angelman Syndrome, a genetic disorder marked by developmental delays and speech problems. “My life is made easier by networking with other Angelman parents through social media and through relationships within my family and my church,” she writes. “There is so much love and positivity out there. You just have to know where to look!”

Kara Clarke Matunas suggests that doggedness and determination go a long way. Mutanas seeks advice from other parents, pediatricians, specialists and parenting groups.

“When your child has special needs, not only are you their mother, you are also their physical, developmental, occupational and speech therapist. You are their advocate at meetings for education and you are their legal backbone if you do not feel they are getting it all,” she writes. “Some days can be a challenge but it is the most rewarding life. I'm so proud of my little girl every day.”

“Research, research, research the diagnosis, treatment, the therapies, and the services available,” advises January Gibbens. “Listen to your instincts about what your child needs and be involved.

And for Katie Sallee, a single mom of a child who has ADHD, parenting has become a never-ending search for answers.

“When you are put in a situation you know nothing about, your love for your child prompts you to learn EVERYTHING about their condition,” she writes. “I know that I don't successfully 'do it all' but I just keep moving, learning, persevering, because, really, I don't have a choice."

Emilia Sings

This morning all of a sudden, Emilia started singing.  She hadn't been much of a singer up until this point, I think, because she cannot say the words, but she has always loved it when we've sung to her.

Today Emilia finally seems to have found a way to sing on her own.  We've been hearing versions of it all day with various songs from Twinkle, Twinkle Little Star to Bingo to Old McDonald to Ring Around The Rosie.  Sometimes she even uses the real lyrics mixed in with her more random melodic syllables.  And, she tells us what she's doing by announcing, "Singing."

This is so exciting and wonderful.  I am thrilled that Craig was home with us to witness this small miracle.  Sing away, sweet Emilia, sing away.

Four Plus Four Makes Eight

Please consider helping our friends, the Nicely Family, about to double in size through the adoption of a sibling group from Poland:

http://giveonesaveone.blogspot.com

Thank you.

Thursday Dinner Epic Fail

This afternoon I peeled and trimmed and washed and cut up a bunch of root vegetables to roast for dinner.  I salted and seasoned and drizzled expensive garlic infused olive oil over everything.  Yes, I'll admit it, my mouth was watering, I had been dreaming of those roasted veggies all day long.

Then I put the Pyrex dish with the vegetables into the oven at 450 degrees and set the timer for 25 minutes to stir.  About seven minutes into the roasting process, I heard a loud bang from the kitchen.  When I went to check, this is what I found:

My Pyrex dish had exploded into a hundred pieces and the veggies were strewn all over the oven.

I was glad that no one was hurt and nothing irreplaceable broken, but the clean-up of this mess was a pain.  Plus, I was so disappointed about not getting these veggies for dinner.  Thanks to the hubz, I was able to drown my culinary sorrows in a mountain of carry-out pad thai.  We'll leave the roasting of vegetables for another day.

Armenian Christmas 2014

January 5 is Christmas Eve in Armenia, January 6 Christmas Day.

To celebrate, we had Armenian food today.  I looked online for a coffee cake recipe for brunch and found something called Armenian Nutmeg Cake.  Now, some sites claim that there's no such thing and others insist that they have found this recipe in regional cookbooks.  I decided to just go with it and bake this cake for our family because it was easily converted to being GFDF and seemed like something all of us would enjoy.  Upon tasting it, we all concurred that it was delicious.

For dinner we had Nevik (or Neeveeg) which is a stew made of swiss chard and chickpeas and often served on Christmas Eve.  Three of us quite liked it, but it didn't come as a surprise that our little Armenian wouldn't touch it.  He opted for a hummus sandwich instead.  I guess that's still pretty Armenian.

Tomorrow is a school day for Rex, so he is going to bring a little Christmas gift for his classmates.  I made coloring pages showing the Armenian eternity symbol which has been found in Armenian architecture since the 5th century.  Each child gets three crayons (red, blue, and orange) to represent the Armenian flag, and a small box of organic raisins, honoring Armenia's famous fresh and dried fruit.

In the years to come when our children are older and will be able to absorb more of their birth cultures, we hope to add further Armenian and Bulgarian Christmas traditions to our holiday celebrations.

Merry Christmas to all of our friends in Yerevan and to the children and staff at Rex's former orphanage.  We miss you and think of you often.

Tipping The Scales #2

Today, the scales tip for Emilia.  She has now been with us longer than she was at the orphanage in Dobrich.  Her transformation  from traumatized near-baby to spunky preschooler has been miraculous.

We are so thankful for the time we've already had with our wonderful daughter and look forward to a shared future of great promise and happiness.  We love you, precious girl.