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Thursday, June 16, 2011

A continuation of this "Thinking..." series-part 4

So I last left off with Gonzo's adoption and finalization.  He settled in nicely, we got set up with all the specialist he needed to see.  The only two hiccups were that he was only a month away from his 3rd birthday when he came home, so there was no time to start early intervention, so he was without therapies until the beginning of July (for four months) while we waited for his special needs preschool placement to begin.  The other hiccup was dental (seems to be a pattern as he are having a mess of a time getting J's dental work done now).  But all in all, it was  a smooth transition, getting back to work was easy, we found a great summer sitter for after school for G, and were able to alternate our schedules easily.  I was even able to go to both a week long conference in Wisconsin in the Spring, and to work with colleagues in our fields in Illinois and Missouri in the summer, and  fields in North Carolina in the early Fall (I worked in plant genomics and agriculture research at the time)  Though I did miss out on the winter Puerto Rico trip due to changes that happened before winter. 

All in all, we adjusted well to being a family of three, and things were going very smoothly, and we knew that we wanted to add another child to our family within the following 18 months after Gonzo's adoption was Final in July.  As we learned it can take a long time to get an adoptive placement, we decided to update our home study that August, figuring that it would be at least the following Spring or Summer before we would be matched.  We focused solely on the US this time, both public and private, and focused again on special needs and were approved for one or two children so that we could potentially adopt a young sibling pair or two singles.  We really wanted to make sure there was at least 18 months in age between Gonzo and a sibling, so we really limited ourselves to looking for a child under the age of 2 1/2, which is very limiting in the US system unless you have a good nest egg for a private adoption.  We had used up our nest egg and the cushion of a second mortgage with the legal battle for Gonzo, and so we were limited to low cost placements with close travel.  We had begun to rebuild some savings specifically for adoption, but did not have a lot to go with.  But we figured we had plenty of time before there was even the possibility of having to travel to meet a child, and then a couple of months after being matched to continue to prepare for the child (as that is how G's adoption played out and most other adoptions from foster care that I had heard of played out). 

Even though Spence-Chapin's great special needs program was within our budget and travel range, we knew they require a year between placements, so there was no point in  inquiring on their site until at least February (one year after G came home).
( Special Note:  If you are a home-study ready family and interested in adopting an infant with special needs there is a beautiful baby boy who has been waiting at Spence-Chapin for nearly 6 months.  Please check out Theo.  If I was home-study ready, I would bend over backwards to add him to my family.  But alas, I am not in the position to do so. )

Now back to our regular blog post:  We renewed our home-study with Adoption Star's special needs infant program, and then just focused on the public listings both in and out of state, mainly through the national photo-listing of kids waiting in foster care who are freed for adoption.  If anyone is interested, a few years ago I wrote a couple of articles on how to use the US system to find a match and how to improve your chances of being selected.  Those can be found here:
Tips for finding a Child
Proactive tips for a faster adoption match

So, we began sending our home-study and family profile out for children that felt would be a good match for us and we for them.  One of the children was a little guy in CT who looked a lot like G and had similar issues, but he kept flitting on and off the lists.  We came close on him, though he had family ties and decided that it was in his best interest to stay within an hour of his biological grandparents so that he could retain those ties, which is good for him.  On was a little girl in NJ who was older than G (she was 5 1/2 at the time), but by enough that we felt it would work, who had CP and a few other issues.  We actually got matched with her about a year later (after J came home), and found that upon review of her full disclosure that she was aggressive with children younger than her, and with G being only 3 and J being an infant with special needs, we decide that we were not ready to take on the risk.  She is still waiting even now, to our sorrow, but we made the decision we knew we had to for the family setting we had at that time.  If you think you may be a family match for her, please bring her home.  Here is a link to her public page: Natasha age 10

One was a little girl, infant,  in North Carolina's public system who had a number of issues which are just too long to list here, the primary one being hydroANencephaly (an issues we would become very familiar with a year later through a family member).  We inquired on her and began asking around of the adoption and special needs groups to get an idea of what it would be like to parent a child with her list of issues (hydrocephalus, potentially deaf, potentially blind, decreased hypothamic activity, etc...). As we were talking to a number of people and researching her condition to figure out if she would be a good match for our family, we received an email from a fellow adoptive parent who knew of a baby with similar issues available through a private agency in PA.  She sent us his recruiting flier and the information to contact the agency.

It was a Tuesday in October when we looked over his flier, and contacted the agency to express our interest in learning more.  We faxed our home-study and family profile, and they faxed us his medical information.  Being a private agency adoption he would not come with medical and special needs assistance the way that adopting from foster care provides.  However, that night we called the adoption specialist in our county (who also went to our church so we knew her outside of adoption as well).  She talked to us about the medicaid waiver program which we should be eligible for, to help with his medical care costs, and we should be eligible for SSDI as well for him, which would provide some extra funds to care for him.  So, our primary concern at that point (the financial impact of adopting an infant with extensive medical needs) was alleviated by finding out about these programs that would help until we could the applications and such done for his adoptive assistance.

Side Note: The adoption assistance programs are in place to help families that are willing to adopt children with special needs.  In the past (which still happens today more often that anyone likes), children with special needs were (are) put into institutional settings to manage their needs.  The cost to the state/country for each child in an institutional setting is well over $5000 a month in addition to their medical costs (that is staff, feeding, etc...).  Also, children do not have the stimulation of family and regular life, nor the advocacy ability of a loving family, in order to help them reach their full potential  and become contributing members of society as much as they are able (which kids like my boys have full potential with the right early support to become completely self supporting adults with college degrees, jobs, families of their own, etc... a chance the would be greatly diminished is raised in an institutionalized setting).  The cost of the children staying in foster care is less than $3000 a month plus medical (I can not remember where I got these estimates, I wrote it out when I got the info, but did not write the source down, I'll try to find it sometime).  For adoption assistance for kids with high needs, most states give around $400-600 a month plus medicaid to supplement your family insurance to cover the kids additional needs (thus reducing the amount the state spends on medical care per child as your family insurance is primary and the medicaid support only covers what they do not).   This gives people who have the heart and commitment to adopt kids who require more care and availability the financial boost to do so (as without it most people could not handle the additional costs of raising a child with special needs), while also saving the state and country more than ten times the funds per child for institutional care.  AND the best part is that it gives the children a chance to grow up in loving families and a much better chance of becoming contributing members of society with full, active lives of their own.  It is a win all around.

Now back to our post... So we decided that with the programs to help bridge us over until his adoption assistance would be accepted (or to use if he ended up not getting adoption assistance--it can be tricky with placements from a private agency), we decided on Wednesday that we would be happy to be his family. His needs were a bit daunting as he was a 28 week preemie who had already had heart surgery, had 2 massive brain bleeds, hydrocephalus, and a number of other issues.  But something about him just felt right, so we stepped out and accepted him. The call we got after that kind of knocked our socks off.  He was being released from the hospital on Monday and if we could please come down that weekend so we could do the training at the hospital for his care needs, then he could join our family directly. To learn more about his initial needs, please see this post from a couple of weeks ago which lists his pre-adoptive needs.  Luckily Philadelphia was in driving distance, and they waived all of the placement fees for his adoption, and we flew into a tizzy.  We both had to get time off from work (easier for me than for A as Cornell was an amazing place to work), scurried to get things together for an infant as we have not planned AT ALL on receiving a child that young.  So an infant car seat, a bassinet, and some infant clothes, blankets, infant bottles, etc, etc... (how often do you have only 2 days to prepare for newborn (he was 2/12 months old but was such an extreme preemie that by the end of October was at a newborn size 7 pounds 2 oz and development level) especially since everything has to be washed in infant detergent and all that BEFORE he comes home). 

So we got that all in place, and then left Friday morning (only 3 days after learning he existed).  We got to the hospital around noon, met with the agency social worker, then got to go to the NICU to meet him and talk with the doctors and nurses.  The agency social worker hung out with Gonzo while we were in the NICU itself as he was too young to be allowed in. We spent a lot of time talking with the doctors.  His potential could have been anything, there was even a very slim chance he would have no issues when he grew up.  But an extremely high chance (over 75%) that he would have severe spastic quad CP.  There was a good chance that he would never roll over, never speak, maybe even never hold his own head up.  There was a chance that he would be blind, and as he had failed 2 newborn hearing screenings, a chance that he was deaf. 

 I took G down for lunch with the social worker, and A stayed with the baby, we brought lunch back upstairs and we sat in the NICU waiting room and talked.  That afternoon, sat down with the social workers, and signed the adoptive placement papers (as I mentioned previously, you have to have 6 months at least after placement before the legal adoption is finalized).  So he was placed in our care. We went over to the hotel and had dinner together.  Then A and Gonzo stayed at the hotel while I went back for the pre-arranged overnight training stay, where the baby, by now called Josiah by us though his legal name was "baby boy" and I had a private room so that I could care for him with all his monitors and such and the NICU was just a couple of doors down and a quick phone call away.  It was a long night, and a lot to learn, but we managed it.  Monday he was released into our care, and once the ICPC was done (luckily it was very fast and had been started the week before when we had declared our intent to adopt (not so much paperwork as with a public agency)) and we headed home with our new, beautiful, and medically fragile baby boy.

That is how Josiah first joined our family (and the real trials of life and death, hope and futility, fear and faith, love and sorrow, and all those other balances...) began..
And our Little Gonzo was a Big Brother now.  One year after we met Gonzo, 9 months after he arrived home. 

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