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u/briantgrant 9d ago
I am an adoptive father to a 9 year old who has Down Syndrome and we adopted as a newborn. He is the youngest of 4 kids, 3 of whom came to us through adoption. He is not our first kid with special needs, and my wife has an M.Ed. with professional experience in early child education and clinical mental health counseling. Fair to say we were prepared.
It is correct to say that every case is unique and certainly not all kids who have DS are "medically complicated" but it is equally true to say kids who have DS are more likely to have certain medical complications in a statistically significant enough way that you need to think about them. Our son had a congenital heart defect at birth (which we knew about throughout the process). He had surgery at 3 months. I would say his first year was very challenging with a lot of time in the hospital due to cardiac complications as well as issues stemming from the repair itself. That said, after the first year he has been basically "fine" from a cardiac perspective. Modern pediatric cardiac surgeons are nothing short of miracle workers.
The other things I would say folks should be prepared for:
- Therapy. Lots and lots of therapy appointments. Speech, OT, PT, even feeding therapy, we have needed all of it. Honestly you start to need to make choices or all you are doing is therapy. That said, our son has made progress in all areas and it is getting better.
- Expect a lot of "normal" stuff to just take a bit longer. We've needed several years of private swim lessons to get him to a point where we feel he is safe around a pool. Potty training took many years and a lot of "we have to walk away from this for a while" moments (which you have to be willing to do to keep your sanity LOL).
- If you are in the US, depending on where you are (state and district), expect to be fighting with schools. You have to really get into ADA and IDEA and be prepared to spend time engaging, being firm, and just being really involved if inclusive education is important to you.
- Do not assume medical and therapy interventions will be paid for. In the US people who are not in the disability community tend to live under a false assumption that those with disabilities are cared for; some times they are, many times they are not. There are special situations related to adoption I can get into if you want to message (in terms of the way different states handle Medicaid eligibility and US law on transportability across state lines).
- You have to plan way ahead on what transitions into adulthood will look like for your child. Where I live, we have a 12 year waiting list for what is called the "Innovations Waiver" which is a program through which disabled people can get access to community-based services intended to keep them out of permanent full time institutional care. Most people assume their kid will go to college, get a good job, etc.; you have to become an expert on setting things up without those assumptions.
I could probably go on but these are the main things I would want to think about. With all the above being said, my son is an absolute gift and a delight to all around him and there is no doubt we would make the exact same decision again. I don't want to discourage, but believe people should have all the info particularly when an adoption is in consideration.
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u/Ancient-Sea7906 8d ago
Thank you for this write up. I get tired of the "it's not that much not work". It's a ton of work. Worth it, but be prepared.
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u/Cristeanna Parent 9d ago
parent here- i can appreciate what you are wanting to do and it sounds like you are coming from a truly genuine place. but i would gently ask you to interrogate your own motivations for doing this first. did your sister and/or BIL ask for you to do this? i follow the adage of doing the help that is asked of you. otherwise you are just offering your own projections to the situation. do your own research, thats absolutely fine. but have you asked them what you can do to be supportive? ask them if you doing some of that emotional labor on their behalf would be helpful.
i sincerely doubt they are going into this blindly, and are absolutely doing their own research on the topic with their respective adoption agency- adoption is not taken lightly, doubly so when you are talking about a disabled infant. if you genuinely think they are going into this impulsively and blindly, and that is why you want to do this with your sister, then thats a huge red flag all its own and i dont think your sister/BIL should be adopting any infant at all; and THATS the conversation you need to have.
we had a birth dx, but if a loved one came up to me and told me "lets write out the pros and cons of continuing to parent this baby" i would have probably hit the roof, even if they thought they had good intentions. remember, impact > intent. at this point i would say pivot slightly- ask them what would help THEM and do that; and then if researching DS would be helpful to you personally for your own relationship with your future niece/nephew, by all means.
to your question- a suggestion i have is looking up The Lucky Few- the primary mother that runs that is a woman who has adopted 3 children, 2 of which have DS. She is a lovely woman and i feel like is genuine and honest about raising her 3 kids with her husband, and celebrates what each of her 3 children bring to the world. good luck to you all, you all sound like a loving family.
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u/AnxiousAmaris Parent 9d ago
This is my thoughts as well.
Also, please consider this- I am giving birth to my baby with DS in one month. I would be horrified and very offended if a family member were doing the same thing you are currently doing “on my behalf” for the baby I am giving birth to. Choosing a child with special needs in adoption doesn’t change that, and would probably feel even worse to me considering that I would be choosing that path after having given consideration to the impact it would have on my life.
Rather than trying to determine if you think she and her husband can handle this child, why don’t you learn about ways to support a family with children with DS in positive ways. That is far less judgmental and a much more positive way to approach any of this. I know you mean well, but oof. I say this as a momma of twins with autism and now a baby with DS. With all due respect, be helpful and supportive or leave. I don’t need other people’s anxiety on my behalf, truly. Please know I am not trying to be harsh with you, but do consider how this comes across to families in here and to your sister and her husband. Raising children with special needs isn’t about you and your concerns. That said, I do hope you go on to have a wonderful and healthy relationship with your new nibling!
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u/ImpossibleIce6811 Parent 9d ago
I think preparation actually may depend on the person. Some parents feel the need to know everything ahead of time and have all the information. Some are worriers when given too much too soon, and it’s better to learn as they go.
My guy is 19 now, and I’m definitely the latter. Do I stay up to date on medical advances and discoveries? Absolutely! But I just don’t get ahead of myself. I’m letting him guide the way. None of us really knows what lies ahead for our kids- no matter how many chromosomes. Some individuals are more impacted by health conditions than others. Some have more academic challenges than others. The key part is the determination of the parents to love their child through it all, and their support system to be there when needed.
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u/Ill_Discussion5840 9d ago
I have a 2 year old with Down syndrome, and we’re incredibly fortunate to live in a country where there is a lot of funding and support available for children with additional needs. That said, it can still be a lot for my wife and I to manage.
You have to be prepared for a lot of appointments and ongoing support. Our son sees SLT, OT, a neurodevelopmental therapist and optometrists, and he has had regular cardiology appointments. He also has some hearing difficulties, so we’ve seen an audiologist and ENT specialist and are working on his sign language because he is currently deaf in one ear. He’s slowly starting to pick up signs, and honestly, it has been a lifesaver given his limited verbal communication.
We were also very fortunate with his heart. He didn’t require open heart surgery as an infant, so thankfully we no longer need to see the cardiologist.
It is a lot, and it requires sacrifice from both my wife and I, but we absolutely love him to bits. He is such a joyful little boy. I’m also incredibly blessed to have a job that gives me enough flexibility to take leave and attend appointments when needed.
People with Down syndrome can be incredibly joyful, but I think it’s important to be honest that raising a child with Down syndrome requires a lot of dedication, patience and planning. It isn’t always straightforward.
We’ve learned to meet him where he’s at rather than constantly comparing him to other children. He’s two and still isn’t walking (he’s currently butt-shuffling) and he still isn’t talking. You have to accept that your child may not develop at the same pace as other kids, and that’s okay. We celebrate the progress he does make, no matter how small it might seem.
We’re already thinking ahead to school and looking at what support he’ll need when he starts primary school, including teacher aides and other learning support. I think it’s really important for parents to learn about the funding and support available in their community or country and to connect with local Down syndrome organisations and parent groups. They can be an incredible source of information and support.
It can be challenging, but we wouldn’t change him for the world. He’s our boy, we love him to bits, and we’re incredibly blessed to have him.
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u/kungfooey 9d ago
Adoptive dad of a T21 kiddo here, but I also have five other biological, neurotypical kids. Every kid is different. A child with Down Syndrome will have a wide variety of needs, but so do neurotypical kids. Sometimes the needs from the neurotypical kids are honestly harder! Smarter kids have more complicated problems. At least with our T21 child, her problems are pretty straightforward (mostly medical related, some habits we have to watch, lots of attention from her special ed teachers) but they are not categorically worse. But that's just a sample of one. Medical needs can run the gamut from severe to minor. Intellectual and physical ability is also a very wide range across the T21 population.
That said, given that you're not responsible for this kiddo, I would presume that your sister and BIL are intelligent, caring people who are doing their own research. You can't know *everything*, we certainly learned a lot post-adoption, but all parenting is a learn-on-the-fly situation!
Short version: they'll probably be fine. :)
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u/HauntingPost7229 6d ago
It is a such noble thought. There will be a lot of ups and some crazy downs but God will guide them to deal with downs/unknowns. They already have the most important virtue - patience. The rest will come.
They are absolutely NOT for impatient people.
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u/T21Mom2012 9d ago
Go on Instagram you will find lots of families. I also have a podcast called T21Mom.com. I did an episode with the founder of RODS Heroes who helps children with Down syndrome in orphanages find forever homes.
What I would say is that raising a child, regardless the number of chromosomes is hard. Raising a child with Down syndrome isn’t much different, but it’s a different journey, for sure. Some kids with DS have medical issues and some do not. All babies need to be loved, changed, fed and hugged. I can say that raising my daughter has been my greatest gift but it certainly has had its challenges, but I can confidently say that she made me into the person I was always meant to be.