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Adoption
CaptainSerious
member
Parenting kids with (unexpected) special needs- "Welcome to Holland"
CaptainSerious
member
in Adoption
I came across this story the other day, and it was the truest representation of how I feel. It was written by a mother, in response to the repeatedly asked question of what it's like to raise children with special needs. I thought some of you might appreciate it:
https://www.our-kids.org/Archives/Holland.html.
Most of you have watched me come to terms with my own "Holland relocation," as my husband and I have worked to adjust our mindsets to accommodate the reality of our children's situations. I could never have described it so eloquently or succinctly, but I identify with this mother's description almost completely. I do NOT regret a single thing we've done to build our family and I do love my children more than my life itself. I would not have done anything differently, even though it brought us here. This amazing joy, however, does come with a wrinkle I didn't expect, didn't want, and don't like one bit. I'm coming to terms with the fact, the way I accept a thorn on a rose. While all that is true, the one thing I pray the author is wrong about is that this pain/difficultly will never go away. I expect/hope it will dissipate over time.
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Re: Parenting kids with (unexpected) special needs- "Welcome to Holland"
I have read this before and loved it. It is so difficult to struggle, and even more difficult to watch your children struggle. I think what makes "Holland" so very painful, whether we are talking IF, SNs, creating adoptive families, etc is all of the pressure we face from society to be in "Italy," when we are not. For as much lip service as people pay to "differences making us special," and "diversity and novelty being so wonderful," the only ones of us that actually believe it, are those of us who are in the midst of the beauty and ruggedness of "Holland."
You may have to work a lot harder in Holland, but at the same time it can be a magical place full of wonder and everyday miracles that the people who went to Italy may never experience...until you find yourself at a birthday party, baby shower, on Facebook, etc (insert your own awkward social situation where your family are the only ones who are in Holland). The majority (in Italy) set the standards, and its hard to swallow when they politely force themselves to say "Oh, that must have been a nice trip,"....while implying "but not as great as ours." My life would be so different if I hadn't accidentally landed in Holland a few times, but now I feel like I would have missed out on so many wonderful things (and people) if I had traveled in Italy with all of my friends, like I had originally planned. I am very thankful for places like this where there is so much openness, honesty and understanding. Thanks for sharing Captain.
What a strong and little discussed truth! This really hit a chord with me, because it happens all the time, and it is probably a big part of the reason why I mourn that M may never "catch up" and be "normal." In fact, if I'm being honest, it's probably a much bigger part of my sadness than it should be. It's just that the incidents proving it are pervasive, and I feel as if I can never let my guard down because they can come at anytime, from anyone, anywhere.
Like the time I was talking to my old, best friend from high school and was explaining to her that M needs special education because he has dyslexia, along with other learning disabilities resulting in delays in reading in math. I told her that although he was starting 3rd grade, and should be in 4th according to his legal age, he was only reading at a kindergarten level. She blurted out, "Really? Wow! I mean J (her daughter) can already read at a first grade level and she is just starting kindergarten this year! She's only 5. That's really bad!"
Or the times when my 18 year-old nephew, who knows he has learning disabilities, is in special education classes, and has a tutor to help him read and better understand English-language usage, makes fun of M for not understanding certain basic concepts because he doesn't understand that no matter how innate time/money concepts may seem to him, for M it's not basic at all.
Or this past week, when I tried to explain to my sister-in-law, who, along with my brother-in-law, is supposed to be the boys' guardian if anything should ever happen to my husband and me, that I will likely be quiting my job this Spring to stay home with the boys, because it's come to our attention that M's needs will be greater and more obvious as he ages and we'll need to really focus on helping him build life-skills--and she didn't get what I was talking about at all and instead said, "yeah, I remember those days with D (her son)," reminessing about how she would have loved to be a stay-at-home mom so she wouldn't have had to rush from work to the baseball field everynight. When I tried to open the conversation again, hoping she'd ask me what I was talking about (we haven't shared M's FASD diagnosis with them yet), she just changed the topic to ask when we were moving and to say she can't wait to live closer to us. I know that they have never been exposed to children with special needs, but it's not like we haven't been completely open with them about the boys' situations (we just haven't mentioned this newest diagnosis yet as we just found out ourselves). And yet, it is so completely out of their realm of things they can imagine that they haven't once asked us about what his school situation is, how the tutoring works, or anything of substance. As much as it pains us, because we know they would love the boys best (and the boys love them so much already), my husband and I are now having the very difficult conversations about who we should select to replace them as guardians.
You may have to work a lot harder in Holland, but at the same time it can be a magical place full of wonder and everyday miracles that the people who went to "Italy" may never experience
This is SO true! My time-off was filled with these moments, and it's exactly what refreshed me to return to work and everyday life with a renewed outlook and attitude. M helped me teach a ski lesson to a couple of family/friends, and was the best assistant I ever had--without me expecting or asking him to. He was so good, and is always so interested in our adaptive skiing equipment and clients that I looked into when he can start volunteering with me. I was already planning on having him volunteer in another couple years, but found out that he can start as early as next year, and I'm so excited because he shines when he is helping someone, especially when it's doing something he loves. This is going to be so awesome, and such great bonding time for us!
The majority Italy set the standards, and its hard to swallow when they politely force themselves to say "Oh, that must have been a nice trip,"....while implying "but not as great as ours."
I wonder how often I have been guilty of this. I've been an adaptive ski instructor (working with people with all sorts of disabilities) for about 8 years now, and I know that I have grown a lot in those years, but I still find myself sometimes saying cringe-worthy things.
For example, this summer I was at a fundraising event for my program and talking to the father of one of my favorite clients. His 12 year-old son is wicked smart, funny, and just all-round cool, and has very low muscle tone. He skis in a biski, and uses a stroller to get around. They also have another son and daughter, each developmentally typical. I've been skiing with them for 4 years or so now, and they are such a sweet and nice family, and I was just overjoyed to see them, since I missed them all winter (we were in Peru adopting J).
So, I was telling them all about the boys (they had never met either of them), and we got on the topic of why we adopted older children and the process. That led me to explain that, when adopting a waiting child from Peru, you review a list of the children, their ages, and their diagnoses, before requesting individual files to review. I told him it's a very difficult process, because we set out to offer a family to a child who might not otherwise have that chance, which meant we wanted to remain open to a lot of different types of situations, but we didn't want to take on more than we felt we could handle.
He just smiled at me and said, "Captain, I find that you can handle whatever you get. You just adjust whatever you have to and grow into it. Especially you. You're good.... It may not be something everyone could do, but if you already are at that point and for that reason, I bet people could. Definitely you."
It was just a heartwarming thing for him to say. He could have taken offense at the idea of me "picking through" the children to find one that wasn't too difficult. But he didn't. He recognized my concerns as genuine and spoke plainly and candidly to me, showing me a bit of himself in his answer. I know they didn't choose for their son to have his disability, and from what his father said, I understand they had to adjust their reality. And they did so in such a beautiful and loving way, with no resentment, and they carried onwards, living a very happy family life.
THAT kind of candor is what needed more of. THAT kind of support and THAT kind of understanding. I don't think I'll ever forget that he supported me when I needed it, rather than hearing only the uncertainty and interpreting that as a slight against his family. I continue to try to be as sensitive as I can, but I also hope to be able to respond to others the way he did to me.
I agree. I have often said, I don't know what I'd do without this board. It has truly been an amazing support to me throughout the years and along every step of my parenting journey. I remain here and share because such pure support (and a reality check when I need it) is rare to find, but also because I sincerely hope parts of my story will resonate with others going through similar things.
I always love your perspective Captain. I honestly think we are all guilty of saying the wrong thing sometimes. I also hope that as I grow I will be able to meet people where they are and be a genuine support, the way that the man was with you.
And I am so glad that you had such a great break with your boys and that you were able to see and enjoy M shining!! As a mom, those are the moments that melt my heart the most.