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Adoption
CaptainSerious
member
Feeling a bit better about things
CaptainSerious
member
in Adoption
After the latest test results confirmed our suspicions about M's age, we've taken the last few weeks to do some research and figure out where we stand. It's unbelievable how far-reaching something so seemingly inconsequential can be, and it really through us for a loop. Things are kind of a whole different ball game now, and it's made us really understand that we need to rethink our long-term plan.
We already knew we were most likely going to have to plan for M to need some support into and throughout adulthood, but we didn't know how much. Now, we have an idea that it will almost certainly be necessary, although we still don't know how much all our interventions may help in the next 8 to 10 years. We are taking a "keep chugging away, and wait and see" approach, but are preparing ourselves for his needs to be greater than we anticipated.
As I may have mentioned here before, I have been having some serious misgivings about our choice of guardians for the boys, if something were to happen to us. We had chosen my bother-in-law and sister-in-law, because they love the boys like crazy, just moved closer so they could watch them grow up, share our values, and wouldn't be adverse to raising children who weren't "perfect" (as my brother and his wife would be). Ever since January, though, we've been seriously reconsidering, because they don't seem to understand the severity of the boys' needs. Part of that is our fault, because we are careful about what we share, but part of it is that they simply have no idea what it entails to raise adopted children or children with special needs (yet alone children who are both adopted and have special needs). For example, in one conversation, I was explaining my decision to quit my job to my SIL, and I told her that I was having a hard time making it to all our doctors', school, and therapy appointments during the week and still performing well at my job, and she replied, "Yeah, I know what you mean. I remember how hard it was when Andrew (her son, who is now almost 19 years old) had all those ball games, and I just wanted to be at the field instead of at work or home cooking or getting stuff done." 
Any time I'd try to get the point across that the boys had extra needs, it would seem to go right over her head. It also didn't help that they aren't the best at handling financial matters, but that bothers me less, because we have things worked out where money will only be available to/for the boys over time.
This has been weighing on me very heavily for a while now, but I'm happy to say that this week has finally shown me a solution. Like I said, BIL and SIL recently moved closer to us (from AL to VT, where we have a vacation home and plan to move in the next couple years), and they really want to be a standard presence in the boys' lives. After spending the week with them, it all of a sudden became crystal clear to me that the boys will never be loved like they are by BIL and SIL. The bonds are already there, so what we need to work on is our concerns over the level of care. My husband and I talked it over this weekend and decided that next month, we will set time aside to talk with them and really explain each of the boys' diagnoses/conditions, what the concerns, treatment, and prognosis is for each, and what it may mean for their lifetime care. We will finally share the full story (which we've withheld to some extent because my SIL is a bit of a motormouth), and lay it all on the line. In addition, I will take the next few months to compile a "care binder" for each boy, that delineates everything medical about them, from day to day care, to recurring doctor's appointments, to medical, educational, and therapy reports, IEPs, progress notes, etc. It will basically be a manual for the boys. Hopefully it will never come to it, but if anything ever happens to us, our family will be able to step in, read the binders, and pick-up with the essentials right away.
I know this all probably sounds far-fetched and reaching, but the care binders are actually something that the Children's Hospital is promoting, and it's something that the boys can take from us as they mature and learn to manage more and more of their own health matters. I can't tell you how much more at ease I am, knowing that we aren't going to shop around for someone who might love the boys second-best or "enough," so that the difficulties of their special needs don't ever seem a burden. BIL and SIL love the boys unconditionally. That is clear. I am finally at ease knowing that we chose correctly all along, and that the rest is just a learning curve. If we can trust them with our sons, we can trust them with their stories and the details of their health. We just have to have faith that in their love, they will rise to the occasion. I have no doubt that BIL will understand the gravity of the situation and educate himself on everything he needs to know, and I have no doubt that SIL will put her own life on the line to save theirs. To know that they will be loved *and* cared for, I am finally at ease.
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Re: Feeling a bit better about things
That is great news.
I hear ya on the binder, and I don't think it's going overboard at all. Not the same situation, but I've been bugging my parents for years to do some more extensive estate planning and have things available for us kids to deal with in an organized manner when they pass. Now they have a binder. If something happens, we open it and will know everything to do. I can imagine it being even more crucial for your kids, and it sounds like a fabulous resource.
I'm so glad to hear that you are feeling better about it and it sounds like you have a good plan. Um, the care binders sound amazing and I'm sure just the process of putting them together is going to be good and helpful in so many ways!!
Thank you so much for sharing your stories here. I really appreciate hearing it and I'm just in awe about what a thoughtful, thorough, grounded parent you are.
Thanks for the updates, Captain. I am so sorry that things have been a struggle! I've been praying for your family SO hard! I am really glad that you are feeling more peace about everything. Like PPs have said, the care binders are a great idea. So smart.
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Amazing news!! I am so glad that you are feeling more at peace about this.
The binder is a great idea! I might put one together for Cohen, even if its just for myself. But it seems like it would be a really great tool for others if it was ever necessary.
I love hearing how much your BIL and SIL love the boys. I really think that's what counts and that their love will help them to rise to the occasion, and care for the boys, if that ever becomes a reality. FWIW, there is no way that someone can really understand what it means to have a child with SN, or a child/children in various therapies, unless you are living it. I wouldn't hold that against her character in any way. I think people just try to relate, and grasp for something that they think may be similar in order to carry along the conversation. Please let us know how the conversation with them goes!!
Thanks, everyone.
I really can't take credit for the care binder idea. I first heard of it at a symposium we attended on NF, which was hosted by a parent support group through our hospital. Here's more information, for anyone who might be interested: https://www.chop.edu/service/family-centered-care/organizing-your-care/. If you click on the Care Binder for Parents/Young Adults links, you'll find detailed information on how to create one, what to include, and printable forms/worksheets to include.
As for the example I gave of my SIL lack of understanding, I know that in isolation it's not a great indicator of her understanding. It's just that in all, she really has shown us that she just doesn't remotely get the severity of the boys' needs. Part of that is her lack of any real exposure to anyone with special needs, part of that is that it's against her nature to read between the lines or be skeptical, and part of it is how closely we guard the boys' privacy and medical information.
We have told them all about M's heart condition, that he has dyslexia and other delays, most likely stemming from lack of proper prenatal care, and that he's likely older than his legal age. We've explained that he's reading on a 1st-2nd grade level and is entering 4th grade, and that he has no concept of time and has great difficulty understanding basic math concepts and how to count money. We've also explained that J has NF and what that means, and that he has a severe speech delay (which they don't recognize because he's still speaking in a mix of Spanish and English). We've told them about how he was constantly sick with respiratory issues up until about this winter. So we haven't hidden much, but we haven't used some of the dreaded terms, like FAS or apraxia, which might conjure up a much more severe picture of their situation and outcomes, if they were familiar with them. Before we adopted the boys, we explained everything that was in their medical files, but we have not shared or thoroughly explained any of the discoveries we've made since they have been living with us. We agreed this weekend that if we want to be at ease with this plan, we have to be completely open and forthcoming with them about these developments, express our concerns regarding privacy and how damaging it could be if some of it got out (to IEPs and other services), and we have to trust that they will understand and respect our desire to keep this information private.
As far as changing M's age, we haven't ruled anything out, but we will most likely leave it as is. For international adoptions, USCIS will not change their records for any reason unless the sending country advises the US that they made an error, and SSN won't change anything unless USCIS will first. That means that while you can and are allowed (and maybe even encouraged) to change it at the state level, the child's federal information will always be the original birth date that he immigrated with. This creates a bureaucratic nightmare, since employment (SSN), background checks, and many other purposes link state and federal information. There are horror stories of children getting caught up in this mess and, in at least one case, being arrested for fraud. While we could try to get Peru to change his age (since they said they would before we adopted him and never did), we most likely will not, because it's not guaranteed that the US will accept the change and because M is emotionally behind and can hopefully benefit more from the additional years of schooling and being raised as a younger child.