Blog For Down Syndrome

Our lives have been in a whirlwind for the past 6 weeks and I haven’t had a lot of time to update the blog here. Donna’s mom broke her hip back in the beginning of April. We have been on the fence for the past year about moving in to take care of her. It’s a real balancing act to respect her space and dignity but also keep her safe and healthy. So the hip fracture forced the issue and here we are now all living together under one roof. She was in rehab for 3.5 weeks so we had some time to get some work done on her house and most of our belongings moved in. If that wasn’t enough I started a new job after being with the same company for 8 years. Shortly after this all hit my mom in New Hampshire experienced some serious complications following a specialized cornea transplant surgery for Fuchs Corneal Dystrophy. I may need to start blogging about parents getting older and caring for them!

Our son Matt (14 yrs.old Down Syndrome/Autism) had a real tough time with the move. We talked it up a lot and encouraged his teachers and staff at school to talk about it with him too. When the day came for the move we felt the best way to handle it is to take him to school, get his new room at the new house all setup with his personal stuff and just go there after school. We didn’t have the time to transition him and frankly I think that would have been more disruptive and confusing for him. Arghh!! The first few days were really stressful and we felt so bad for him. He would collect his “security” toys and belongings and wait at the front door to go home. We had a lot of lower lips stuck out, tantrums and lots of interrupted sleep. Slowly but surely as we all got into our new routines and he was back to the familiar surroundings of school he really settled in well. You can tell he is still waiting for someone to come out say “OK time to go home” but he is gradually marking out his new space and adjusting. We still have the other house and we are thinking maybe in mid-June taking him over there and letting him see the place empty. The good news is he has more space at his new home both inside and especially outside. At his “old house” we were right on a very busy street and he couldn’t go outside and freely play without close supervision. I went outside with him over the weekend and it was wonderful to see him be able to move around more independently.

We just received some great news last Friday. We had a special meeting at Matt’s school with his current school district representatives and the new school district we moved to. We were really nervous that the new school district wouldn’t fund the placement at his private school that he has been at for 9 years. We went “well armed” and prepared. We had a education advocate from our county advocacy organization (The ARC of Delaware County) attend the meeting with us. Everyone was in agreement that Matt was where he needed to be and the new district will be funding his placement. Sweet!

Donna’s mom is doing real well and regaining her independence. My mom is still struggling with corrective surgical procedures for her eye but our Aunt Jeanie who had come up from Florida to care for her through the surgery has been tremendous. My new job is going great. I’m working with some great people and I feel like I’ve landed in a good place. Donna as always continues to be the rock of the family, managing to keep all of this together somehow.

I can’t say enough about how wonderful all our friends and people at Matt’s school have been. They have been tremendously supportive and helpful. I don’t know what we would have done without them. We really are so thankful to have such wonderful friends who care so much about our family.

Matt is smiling more each day and continues to bless our lives in so many ways. I think this change is going to do us good!

My wife and I were unable to have our own children and sought out adoption as an alternative to start our family. Having heard and read stories from others and in the media we were not optimistic that something would happen for us given the time and costs involved.

We learned of an adoption agency in Philadelphia called, Option of Adoption that later became Blue Rose Adoption Services. They specialized in adoption of special needs chidlren and children of different ethnicities. In a little over 45 days we went through the application process, training seminars, and home studies when the phone rang and said we have a 3 month old baby boy with Down Syndrome available for adoption, are you interested? WOW! What a moment! Of course we were and so we set out on a crash course in the adoption system and in parenting. That was the first week of March 1992. By April 17, 1992 he was in our arms in our home. Obviously I am skimming over some of the details that may be important to someone reading this who is considering adoption or even placing their child up for adoption…. but I’m trying to avoid writing a novel. If anyone has specific questions about our experiences please feel free to post a comment or email us.

The adoption agency here in Philadelphia was wonderful to work with and always supportive of us. We continued to socialize with the employees and other adoptive familes for many years until the agencies dissolved and people naturally drifted apart. They will always hold a fond place in our hearts.

My over all impression about adoption… If money is a constant issue then that should raise red flags. People deserve to make money and pay their expenses for their hard work and expertise but not at the levels approaching extortion. Follow your gut instincts. It’s hard work. As hard as it may be, be prepared to walk away. Prepare yourself to go on some emotional as well as physical journeys. The trip is worth it though.
The adoption agency in our sons birth state of Massachusets is a whole other story though…. WHAT BASTARDS they were! Unfortunately I hear this can be typical. We arrived in Massachusetts the day before and called them checking to make sure all the “t’s” were crossed and the “i’s” were dotted and yes they said everything was fine and we’ll see you tomorrow. We arrived promptly for an 11am appointment, signed all the paperwork and shortly thereafter were united with our son when the foster mother who had been caring for him arrived. We don’t remember the fosters mother name but we are so thankful for her savy. She walked past the adoption agency staff and placed our son in our arms, exchanged some small talk and split. We later realized that she knew how this agency worked and that it was best for her to be gone. She was definitely one of the many angels we came across in our adoption journey.
For our support my mother, sister, nephew and grandfather were there from New Hampshire. The next thing we know the executive director enters the room asking us about their $4000 payment. Huh??!@! Our adoption agency in Philadelphia specifically told us NOT to pay any other fees. We left to go to her office while my mom cared for our “newborn”. We got on a conference call with our agency in Philadelphia and the two executive directors proceeded to fight it out. When I got on the phone I was told I needed to be prepared to leave without our child. Yeah right, too late for that, I knew in the deepest part of my soul that was not going to happen. I told the executive director what I thought of her tactics and left the room with my wife still there. I got our son bundled up in a car seat, told the receptionsist if anyone needed me I would be out in the parking lot in my car. I left my family and wife to straighten out any details and marched out, with my new son in my arms. I loaded him into the car and got ready to go. I don’t believe that an agency that specializes in placing “normal white children with rich white families” really wanted to be left with a 3 month old infant with Down Syndrome in Foster care. My gamble was right. It was only later that I found out that my tenacious wife had gotten on the phone with state agencies in our home state of Pennsylvania and was raising hell in the executice directors office.
Shortly thereafter, with signed documents in hand,we said our goodbyes to our family and we were heading down the turnpike NOT having paid the $4000 ransom and headed into a 13 hour freezing rain and sleet trip to Philadelphia. None of that mattered though because we had our beautiful child with us and in a weird way we sensed our tiny car was being guided home. We often refer to this whole experience in Massachusets and the drive home as our labor pains.
(Maybe sometime I can write about my wife and I doing our first diaper in a McDonalds booth right off the turnpike. We were clueless, but managed )
By definition this was an open adoption. We had written early on to the birth family and sent pictures. The birth-father has contacted my wife several times over the past 14 years by phone but I have had no contact with them. Neither of us have had contact with the birth mother. If I did meet them I would hug them and sincerely thank them for giving us the ultimate gift of their child to us that has enlightened our lives.

Adopting Matthew is a daily reminder to me that there really are miracles in life. I have never felt so full or so loved or loved anyone else this way. I have nothing to compare it against. I know I am loved and respected by my wife, family and friends but to steal a phrase from Jerry McGuire, “Matthew completes me”.
Despite a bad experience in Massachusets adoption was the most wonderful thing that has happened to my family. I would hope that other people reading this can open their hearts to adopt a child or if your are considering that you can’t parent a child with a disability that you consider the option of adoption. You will be loved and blessed.