Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, April 29, 2012

Pre-Adoption Straight Talk

People frequently contact me with questions about adopting a child with special needs. I'm thrilled there are so many people who are interested in not only adding to their family, but specifically a child with special needs. Here are some things to consider when you're making your decision. This post is not meant to scare you out of adopting, or to intimidate you. Yes, I'll be pointing out many of the negatives in adoption. This post is meant to give you things to think about before adopting, laying the groundwork to a successful adoption experience.

Experience: Many people who adopt kids with Down syndrome or other special needs already have biological children with similar diagnosis or medical needs. They "get" what it's all about and have determined they can manage doing it all again. If your family is new to the world of special needs you need to do some research! If you're looking to adopt a child with Down syndrome, there are many resources on the net, like the National Down Syndrome Society , the National Association for Down Syndrome  or the  National Down Syndrome Congress where you can read through some of the common medical issues. (You can find similar organizations for just about any disability group or medical condition.) You can also read through the 2011 American Academy of Pediatrics abstract on Health Supervision for Children with Down syndrome, which will give you a a pretty good idea of what's involved for routine care for kids with DS. Ok, now that you've got your reading done, it's time to head to some events! Check out the calendar for your state or local level Down syndrome associations to see what's gong on. Meet the families and self advocates who live with Down syndrome every day. You could also attend a Special Olympics even near you. ENJOY your time!

Location: Ok, I have to say this one really gets to me. Several times, particularly in the past year, I've seen families adopt kids who need a high level of medical care but they live in very rural areas making access to medical specialists difficult. If you don't mind doing all the driving for what can become many trips, for many years, that's awesome! Unfortunately I've seen a few families recently who have denied their child necessary medical care because it's too far away and they don't like to drive in the big city. Really? You knew this going into the adoption! Checking out the logistics needed before you adopt can save you a lot of stress later down the road. If there is an international adoption clinic near you, they can help you locate specialists who are used to dealing with the unique care needed for many post-institutionalized children. Check out the children's hospitals near you. Do they have specialties? (we have several children's hospitals near us, one is the "go to" place for heart defects, another for orthopedic treatment, craniofacial care, etc.) If you have a child identified, are there specialists near you who are suited to meet the needs of that child? Are they taking new patients?

Health Insurance: What kind of health insurance coverage do you have? Will it cover all the things your new child may need? What is the yearly deductible? Is there a lifetime max? If so, how much is it? Ask families of children who have similar needs how much medical care of for their children costs.

Schools: Please, before you adopt, check out your local school district. A district may be awesome for typically developing children, but really leave a lot to be desired when it comes to special education services! Look into the different options of inclusion, mainstreaming, or self-contained classrooms. What is the philosophy of the district you're in? What do YOU want for your child? Will your child be able to attend your neighborhood school or will he/she need to be bussed to the other side of the city our county? Keep in mind that most services (PT/OT/ST) provided in school are the bare minimum and you may find you need to add private services. Are they available in your area? You may be planning on homeschooling your new addition, only to find out his or her educational needs are beyond you. Will you be comfortable seeking public education if that happens? If not, what are your other options?

Advocating: Are you prepared to advocate for your child to make sure his or her medical and educational needs are met even when you've been told "no" by the professionals for various things? Are you prepared to speak up the first time your child is called a horrible name, is mocked or made fun of?

Support system: What kind of support system do you have in place? How does your extended family feel about the concept of you adopting a child with special needs? Many say, "It doesn't matter what they think." only to find when it really happens to them, it DOES matter, and it hurts to say goodbye to family and/or good friends. All parents need a break from their child. Do you have anyone who can care for your child(ren) so you can get that break?

Time: When you bring your new child home, how much time will you have? If both parents work full-time, are you able to take maternity/paternity leave to be home with your new child during the bonding process? If you need to seek childcare, are there places near you that have the ability to care for your child's needs, including emotional/social/medical?  Bringing home your new child, particularly a child with Down syndrome or other significant needs, requires a lot of medical appointments right off the bat to sort out all the things which have not been addressed until now. (Asher, who only had a few issues, had 16 doctor appointments in the first 8 weeks home, a surgery w/hospital stay at 3 months, and a jazillion follow up appointments. Axel had no known medical issues other than needing dental work, yet ended up having a life-threatening condition requiring MAJOR surgery out of state, followed by months in a halo, and we're still doing follow-up appointments out of state.)

Are you prepared in your head?: Are you prepared to care for a child whom you have no biological connection to? Are you prepared to NOT love the child when he/she is placed in your lap? How do you feel when the most annoying neighbor kid visits your house? Some days your newly adopted child (particularly if they're older) will feel like that kid. Are you prepared to parent a child who may not like you? Don't expect that this child will suddenly like you, particularly when you are taking that child away from everything he/she knows. If you have parented step children, you already know these feelings and know weather or not you can handle it. If you are prepared for it, you will recognize when you're feeling it and be able to work through it. If you're not prepared for this, it can catch you off guard and be a very scary feeling.

I know there are other adoptive parents reading this post who may have things to add. Please do so in the comments. Again, I don't want to scare you away from adopting, but to give you some things to think about before you adopt.

1 comment:

Jennie said...

Great post, Leah. I so appreciate your candor.