And We Danced—Down Syndrome Adoption
By Teresa, and a proud Adopt4Life mama
Adopting a child was something I'd always thought would happen at some point in my future, but I certainly never set out to adopt a child with special needs or Down syndrome, let alone as a single parent. But alas, this is my story—our story—and I wouldn't have it any other way.
For whatever reason, for most of my adult life I've had a special place in my heart for with those who have Down syndrome (call it fate, God, a sixth sense...), but there are moments that I'm sure nudged my heart toward opting for this life. There was feeling awed by the family who brought their 3 adult children who had Down syndrome to camp; the many patients I've met and cared for in my nursing career, where the light and joy these children emitted (often in the worst imaginable circumstances) spoke volumes to me about how to live; and there was reading Kelle Hampton's birth story of her daughter Nella and feeling incredibly moved and inspired watching their family embrace life with Down syndrome. But the real special moment was the first time I met my daughter where, even in her darkest and most confusing days, she (and we) danced, long before she was mine. And I truly believe something in me knew that life brought us together for a reason. And sure enough, 2 years later I became her mama.
When I signed on to this journey I knew it would open new doors, but I couldn't have fathomed the incredible people I'd meet—the therapists, special education staff, childcare providers, medical staff, parents on the same journey... or how these people would shape me and guide me, or how we'd spend so much time together that they'd ultimately become "family" and know more about what was going on in our life than our own family and friends. And I knew there would be health challenges, but I couldn't have anticipated the extent of the exhaustion or sleepless nights, the ER visits, the surgeries, or the many, many doctor's appointments and tests my girl would endure... And I knew that I would change as a mom, but I definitely couldn't have predicted the strength or the passion that would be ignited in me, or the advocate I would learn to become, or that I would willingly shake my booty in public to make my girl laugh. I also couldn't have anticipated the stress over school meetings, the struggle to get my daughter the services she needs, that her developmental trauma would trigger illness every time her stress level peaked, or that I would ultimately pull her out of the school system to homes-chool (one of my "I will never’s..."). I couldn't have known how challenging lack of spoken language is, understood the fears I'd have over whether she'd be able to form reciprocal relationships, the heartache and grief I'd feel for her birth family, or the magnitude of effects a history of trauma brings. But most importantly, I certainly couldn't have predicted the beauty or the joy or the love my daughter would bring me, how I would learn to celebrate the small details, what a gift she would be to me and to the world around her, or how my heart would flutter every time she says or signs an unprompted "I love you." I feel so grateful to be this girl's mama and am forever changed for the better.
This path is not easy, but I promise you it is grand.
Practical tips and things to consider when planning to adopt a child with Down syndrome:
1. Be prepared. If you’re considering the adoption of a baby still in the womb, you will need to be prepared for anything because there are a lot of unknowns. Heart defects are common in children with Down syndrome and will often require surgical correction. Children with Down syndrome can also face a number of other medical issues including thyroid issues, feeding issues, and vision issues.
2. Educate yourselves. Read and get connected. The Canadian Down Syndrome Society is a great resource. Look into your local Down syndrome chapters — such as these local groups across Canada — as they can connect you to local families, who will be your most valuable resource. You can also read books like the ones on this list.
3. Insurance. Find out what coverage your private insurance has for therapies such as Physical Therapy, Speech & Language Therapy, and Occupational Therapy, as these will be incredibly important in helping your child thrive. Some therapies will be provided through Early Intervention Programs and School Based Supports, however these will be limited and often have long waitlists and intermittent therapy, so private therapy will help fill those gaps. Also keep in mind that your child will qualify for some funding to help (such as the Disability Tax Credit, Special Services at Home, Assistance for Children with Severe Disabilities, and ODSP) because of their Down syndrome diagnosis. A child with Down syndrome who is adopted domestically may also qualify for an adoption subsidy through your local Children's Aid Society to help offset other costs related to their care.
4. Preparing for the future. A child with Down syndrome can achieve a great deal of independence, but he or she will likely need extra support even into their adult years. This is another great reason to meet and talk with parents who have children and adults with Down syndrome. Think about who will care for your child if you and your spouse should pass away - possibly a family member, an older sibling, or a close family friend. Here is a US site with advice on guardianship; and here's some Canadian information on who can make decisions for your disabled adult children and estate planning.
5. Educating your child. You will need to look at all of the systems and resources available to educate your child. Early Intervention programs can provide in-home training, as well as connect you to speech, physical, and occupational therapy to help you assist your child in meeting their developmental milestones. Once your child is school age, these services will be available (to an extent) through the local public school system. Your child will also receive Special Education Services and will be legally entitled to attend and be fully integrated in your local school if that's where you would like them and what would best suit their needs. Your child will have an Individual Education Plan to meet any alternative education needs. It can be overwhelming to learn all the ins and outs of the school system so be sure to talk to your local school and learn about the processes outlined in the Ontario School Roadmap for Children with Special Needs. You will also have the option of Private School or Homeschooling, though supports and services change with these options.
6. Family and siblings. Children with Down syndrome can be fully accepted and included in your family and with any children that are already home. In fact, research has shown that siblings learn so much and become better, more enriched people because of the impact their siblings with Down syndrome has on their lives. That said, it will be important to educate and prepare your family for welcoming a child with Down syndrome.
Generally, adopting a child with Down syndrome will be challenging and require a lot of you, but you will see new level of beauty and joy and altruistic love, and learn to appreciate so much more about life and the world around you.
(adapted from The Mighty's 6 Tips to Consider When Planning to Adopt a Child With Down Syndrome)