Lucas Camilo

Things continue to be often joyous and amazing being the parents of Lucas and Ida. Lucas is still loving being a big brother. We got a week-long visit from our friends Alexis and Mackenzie, who were a huge help in the transition of Burke back to work, taking care of Ida so that I could take Lucas to appointments and help with a school field trip. We even took Ida to her first Mariners game.

My least favorite part of living with disability is probably the never-ending management of paperwork, appointments, opaque bureaucracies, and more paperwork. And that part of our life has not taken a break just because we had a baby. In fact, the piles of papers and lists of calls to return has only gotten longer as we continue to seek help for Ida.

For example, this week we are dealing with conflicting letters from two state agencies, one telling us that Lucas has been approved for a waiver program, the other saying we haven’t been approved. The letters use slightly different language so that it’s not even clear if they’re contradicting each other or not. And the social workers don’t answer the phones to tell us what it means. Meanwhile, we got a call from the billing department at the company that will build Lucas’s power wheelchair, and, if you can believe it, its possible that a denial would actually move along the approval of funding for his power chair faster. It makes no sense, I know.

Burke and I often growl and groan, and then quickly check ourselves on how much we complain. Because the reality is that this would be SO MUCH HARDER if we weren’t from this country, if we couldn’t walk into meetings with all our race and class privilege, or if we had to rely on  Medicaid and Supplemental Security Income (SSI) for Lucas’s care.

A couple years ago we learned about an organization that is supporting  immigrant families and families of color in King County to be able to access the services their children with disabilities also need and deserve.  We went to an event and were so excited to meet families from all over the world who were also doing their best for their children – navigating these challenging systems while celebrating all the joy the get from their beautiful, unique children.

So I was honored when I was invited to join the board of Open Doors for Multicultural Families this year. I’m just starting my board term, so I’ll have even more to say down the line as I get more involved. But for now, I wanted to share an appeal for support as we gear up for “Give Big,” an annual day of philanthropy in Seattle. We would deeply appreciate your support for Open Doors.

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Dear Friends,

I am writing to ask you to please plan to donate to Open Doors for Multicultural Families on Tuesday, May 5 for Seattle’s “Give Big” day.

As a parent of a child with a disability, I know how much work it is to navigate all of the systems that Lucas needs. To parent Lucas, Burke and I have had to essentially learn a new language, one that you can count yourself as lucky if you don’t understand: we create measurable goals for his IFSP and IEP; understand the WACs so that we can talk with DSHS about Lucas’s right to health coverage; work with orthotics experts to get Lucas the best fitting TLSO and DAFOs… and the list goes on.   When I get frustrated at how much work it is to get Lucas what he needs (while also getting Lucas to all his appointments, and doing his therapies at home, AND finding time to just play with my kid), I think about how much harder it would be for us if we didn’t speak English as a first language, or if we didn’t have the economic security that we have.

Which is why the work of Open Doors for Multicultural Families is so critical.

Open Doors supports immigrant families and families of color in King County who have children with disabilities, helping them navigate these systems and get the services they need. Open Doors also offers training to families to advocate for themselves and for their communities. Please join me in supporting this critical work!

$5: provides a transportation stipend for a low income family to attend needed parent training to better understand their child’s education needs.

$25: gives one recreational activity opportunity for a family to have fun together with their children with and without special needs to reduce social isolation.

$50: provides supplies for a parent support group of 8 parents to meet, to socialize and provide emotional peer support to one other.

$200: teaches a youth with a disability the value of working and motivate them to graduate with a diploma.

On Tuesday, May 5, you will have this opportunity to give. I am asking for your support – please plan to give anywhere from $5 to $500 to Open Doors for Multicultural Families on TUESDAY, MAY 5. Your online donation as part of “Give Big” will help us to leverage additional matching fund from the Seattle Foundation.

Will you right now:

• Mark “Give Big” on your calendar for next Tuesday, and
• Write back to me letting me know you plan to give to Open Doors?

My goal is for 25 of my friends and family to give to Open Doors, so I’ll keep emailing and calling you until I know I’ve met my goal!

TO DONATE, PLEASE CLICK HERE

Community of all kinds is so important to us – Lucas soaks up the love, and we relish the support we get so that we can keep being the best parents we can be. Thank you for joining us in supporting many, many more families of wonderful children with disabilities.

Love,

Krista