Sunday, April 24, 2011

Happy 8th Birthday Anthony!

From the first few days of your life, the emotional roller coaster ride you took us on, you continue to do things your way! I look back on our 8 year journey and have no regrets. From the first day of the diagnosis of Down Syndrome I have struggled with where society has evolved. As we sat in Anthony's hospital room, hoping and praying he would recover from his heart surgery, we received the news that Anthony was born with an extra chromosome. The next thing we knew the room was filled with people telling us what to expect, asking us if we had done the prenatal test to determine genetic abnormalities, and offering their perspective on what life with Anthony would be like.

Let's start with prenatel genetic testing, we had done the only test that really mattered, an ultrasound that told us we were going to have a boy to go along with our seven girls. My take on prenatel testing is best told by the experience our neighbors went thru during their pregnancy with expecting their first daughter. They had the testing done & were told they were going to have a baby born with Down Syndrome. They were upset & worried for the remainder of there pregnancy only to find the Doctors were wrong & their daughter was born perfectly healthy. God creates and plans our life. If you can't do anything to change the outcome what good does it do to worry. You need to have faith that God has a reason and a plan for you, and whatever the outcome you will be stronger because of it. In my opinion the only thing I might have control over, in knowing of a genetic defect, would be termination of the pregnancy & that was DEFINITLY NOT AN OPTION! It's like I told my daughters when they said they were sorry Anthony was born with Down Syndrome: I asked " is he not still your brother? Do you not help your sisters if they need help? If something happened to one of your sisters or mom or me, would you not do everything in your power to take care of them? Then why would you feel sorry for Anthony, he is still Anthony & we will do anything we need to do to help him be all that he can be!" I feel sorry for anyone who might choose to miss out on the wonderful life experiences Anthony has given us by choosing to terminate a pregnancy. I am truely blessed to have Anthony in my life. You will never know what true unconditional love is, you will never know the true meaning of what it is to stop and smell the roses, you will never know what an amazing world we live in until you see it through the eyes of a child like Anthony. In our throw away society we have lost sight of what is really of value, the life changing rewards I could have missed out on had I decided to terminate Anthony's pregnancy.

Next, I look back on the room full of so called experts filtering in and out of Anthony's Hospital room as he was recovering from heart surgery at 4 days old. The diagnosis was Down Syndrome and they all were truely there to help, or so they thought. We were just glad Anthony was alive and had yet to really proccess the fact that something else might be wrong with our dear little son. When one of the experts finally asked if there was anything they could do for me, outspoken me, being my brutelly honest self, told them to "get out!" We had just put our 4 day old son thru heart surgery and he survived! Yes, there would be some challenges ahead because of the Down Syndrome, but he is our son, we will give him the best of everything we can possibly give. We will research any and all options available to provide our son the opportunity to have the fullest life possible. But for now, give us time to process all that has happened in the short 10 days of his life. If I could impart 1 thing on someone going thru a similar situation is that the experts aren't always right. Don't hesitate to challenge them. Ask questions & research until you are satisfied with the answer. And have faith in the bigger pictures, that there is a plan and a purpose for everything you experience in life. The experts have said we could have saved Anthony and ourselves from experiencing the pain and suffering created because of Anthony's condition, but we also would have missed out on the joy and wonder his condition has provided us with.

I can't imagine what our life without Anthony would be like. We have come to know so many in the community because of him. Thanks to Anthony & his condition we became very close friends with Anthony's surgeon and her family. Thanks to Anthony & his condition we have become lifelong supporters of the Spokane Guilds School and their loving staff. Thanks to Anthony & his condition our family has become outspoken advocates for persons with disabilities, protesting the "Tropic Thunder" movie, advocating the removal of the "R" word in the halls of our schools, lobbying for equal rights for all! Thanks to Anthony & his condition I have a greater appreciation for the families of individuals with disabilities, the service providors who assist them, and the lobbyists who fight for them. We have a social obligation to break down the barriers and end the last truely discriminated segment of our population.

Thank you Anthony for lighting up my day with your smile!
Thank you Anthony for helping me to see the real beauty around us.
Thank you Anthony for showing me unconditional LOVE!
Thank you Anthony for reminding me I make you feel safe (when you run to my bedside & snuggle up and fall back to sleep after a nightmare)
Thank you Anthony for teaching me you CAN do it!
Thank you Anthony for making me laugh and also helping me cry.
Thank you Anthony for pointing out the injustice in the world.
But most of all Thank you Anthony for teaching me that if we try hard enough we can do anything we dream of doing.

I love you very much!
Happy 8th B-Day and looking forward to many more


Sunday, October 31, 2010

A Treat of Love

It is with great hope that all of you had a wonderful Halloween surrounded by family and friends.

Every Halloween we attend a party with friends and the children all Trick or Treat together, but this year we had to miss out on the great fun with friends. Very rarely do I get sick, but this year I have been hit with a head cold that is trying to move into my chest and was in no shape to be around anyone, so we stayed home.

Katrina & Ali took the little ones Trick or Treating before the sun set. They had a great time and loved reconnecting with our neighbors. One of our neighbors asked the kids what their names were (people get our kids mixed up, must be there are too many) so our children told them their names. Anthony answered, told her what his name was, but asked her what her name was, which she answered with great delight. Anthony told her that he was glad to meet her and wished her a great evening. This neighbor is a recent widow and well into her 70's and I am sure Anthony made her day. Of course I am very proud of his compassion for others and his intuition to reach out to those who need it the most, which is something you can't teach.

When we got the diagnoses of Down syndrome, I broke, our Doctors words are still very loud in my head after I questioned if the Doctor got the right test. He said "This baby is your baby, his blood test tells us he has Down syndrome. This little boy will bring so much love and joy to your family. Your family will be richer" Those words touched me then, but nothing like they do now.

We thank God for the gift of Anthony to our family, the gift he is to many friends and family who have been touched by him, to the many strangers he has touched and to the many who have yet to meet him. We love you Anthony.

Tuesday, October 26, 2010

Getting Better

In the last post I stated there would be bumps in the road with putting Anthony in our neighborhood school and boy have there been some bumps!

Moving Anthony to a new school has been exciting and hard all at the same time. The first week of school was spent getting Anthony comfortable in his new school and helping him with the fears he had with being in a new school with all new friends and staff. Anthony cannot articulate his fears, instead he will try to escape a situation that is stressful and a new school was very stressful, so we saw many attempts of escapes. Once we got past the first week we started to see less behaviors and Anthony feeling comfortable with his new environment.

Today Anthony is having much better days, he is still having some rough days, but those days are becoming less. Anthony is coming home very happy and willing to talk about his day at school, which is a great improvement from last year and he is getting to be with his peers. The first time I heard one of Anthony's peers yelling his name "Hi Anthony!" from across the parking lot I wanted to run to that child and hug him! Since that day I have heard other children calling to Anthony and every time I hear his peers call to him I can't help but smile and celebrate what we are working towards......Inclusion = Included.

On the days that a rough days for Anthony, I try to figure what happened that may have contributed to his rough day, but focus on those great days. I know if we keep at it there will be a day we will look back and remember when we first started this journey. So, for now I will keep trying to find what works and what doesn't, it means we may have to rearrange, but that's what we must do to help Anthony reach his potential.

Sunday, September 5, 2010


Holy cow!!!! We just got out of school and it's time to go back! Okay, okay calm down, is what I keep telling myself because I am excited, nervous and looking forward to Anthony starting this school year!

As some of you may recall there were some issues that in the classroom Anthony was in last year with his teacher. The details I will not get into here right now, for those who may want to know there is a little information on the blog. Anyway, because of the issues we were having we decided that we really needed to explore what we should try with Anthony and what we kept going back to all summer was inclusion.

For those who don't know, inclusion is when children with disabilities are in a general education class with their typically developing peers, some students will have pull-outs to a resource room for some subjects, some will not, some will have a one on one aide and some will only have an aide in the classroom.

Anthony was in a DLC room which stands for Developmental Learning Center. In his room the grades were Kindergarten thru 2nd grade and all different kinds of disabilities and behaviors. We had to travel 8 miles one way to get home to this school because our neighborhood school does not have a DLC in it. Anthony's IEP (Individual Education Program) stated he would be pulled out of the class 35% of the time to attend the gen ed room, this did happen, but stopped towards the end of the year, by the teacher's choice, which by the way is wrong. Anyway, Anthony was learning behaviors in the classroom just by watching the other students, saw the attention they were getting and so he has tried them too, but gets no attention for them at home so the behaviors are short lived in our home, but not at school were they have to give him attention to maintain control, because of the attention they get children will often continue with such behaviors and than it all becomes a vicious circle.

Anyway, Anthony will attend our neighborhood school with all our neighborhood children. We have decided to repeat the 1st grade and he will attend Gen Ed with some pullouts to the resource room and the only service I want continued will be Speech therapy. I was almost in tears when I was talking with the school officials planning, because they were so excited, open and wanting Anthony to be part of the school, which is rarely the case without a fight.

Yes, there will be bumps in the road, there will be lots of work to be done, there will be celebrations and there will be tears, but the benefits for Anthony and all is peers will be very enriching life lessons that no book or teacher can teach our children. Anthony will learn from his peers what all children learn and Anthony in turn will be teaching his peers all that he has taught many of us, real compassion, trust, unconditional love, acceptance of all human life and he will be included. I once had a mom of a little girl with Down syndrome tell me of their fight towards inclusion "It was a fight, but well worth it. It took all of first grade to get things in place, but entering 5th, but birthday parties, play dates, sleepovers, AND great academic progress every year, it has been well worth it!!" and what parent doesn't want their child to be "included" in all that all other children are included in.

On Tuesday, September 7th 2010, Anthony will no longer be part of a "segregated community", but a member of "all community" and my heart skips a beat at how wonderful that will be, as he deserves to be "included", to be part of the community he will live in for the rest of his life.

In 1963 the great Martin Luther King gave a speech that forever begin the change of the world we live in. "I have a dream, one day this nation will rise up, live out the true meaning of its creed...that ALL men are created equal" We as a society joined a social movement towards acceptance, for the most part, accepting of different nationality's and different religions, of which I am thankful for. It was because of this social movement that I can choose to have meaningful relationships with ALL people. Yes we have lots more work to do and there are many in our world who will never be accepting of all people, but we have made great strides.

We have made great strides for all people but people with developmental disabilities. In today's world there are many states (Washington is one) who have not made much progress from 1975 when children with disabilities were first accepted into public schools. Children with disabilities are still being segregated from their peers leaving many parents fighting for their children's rights with many of these fights ending up in a courtroom, costing the families and school districts thousands of dollars.

Before Anthony I assumed all children were included in the public school system, but since having Anthony and being in the work that I do, with a heavy heart I have learned our children are not being "included." Sure the public schools have special classrooms for children with disabilities, but is that really including all children? If the schools were "including" all children then why do parents have to fight to get their children out of the special ed rooms?

Anthony is one of the lucky ones, we live in a district who knows the benefits of inclusion. There are many families in Washington who are not so lucky. Washington state needs to learn from states such as Oregon and Hawaii, just to name a couple who do practice inclusion with pullouts for ALL Students who need it, there are many states who do nothing but inclusion because it works.

I have a dream.....that someday all students will be included equally into their community and all segregation will be no more!

Tuesday, July 6, 2010

A great evening!

Tonight I had a date with a handsome young man who was such a gentleman. Dinner was out at the casino, so we had 30 minutes to visit on our drive to the casino. Dinner was lovely with a wonderful slide show and my little man was very polite to others at our table, but especially polite to the wait staff. After dinner I watched my handsome young man receive his trophy, patiently pose for many photos and took time on his way back to our table to shake the hands of many people who offered a congratulations to him. After everybody received their trophies we drove home and had a great time reflecting on the evening.

What a great time it was for Anthony and I to have an evening together, just mom and son! I couldn't be any prouder of little man! Seven years ago Anthony was fighting to live as he recovered from heart surgery and many other health issues. I didn't vision Anthony ever playing baseball, getting trophies, having a meaningful mother/son evening or trying to have conversations with me, so all of these are gifts to me from my son, gifts I am so proud of and excited to share with all of you!

Thank you Anthony for being our son, brother and friend to many. You are a gift to all of us and we are so thankful for all that you teach us.

Not only am I thankful to Anthony for a great evening, but I am very thankful to Lee and Leslie! If it weren't for Lee and Leslie I know Anthony and many other children would not be able to play baseball and won't have a dinner to honor their achievements. You two are so appreciated and there are no words that could ever tell you how much you two mean to our family, but especially to Anthony.

Anthony and Lee, his favorite coach!

Gotta love Otto.....Spokane Indians mascot.

Most of his team!

Anthony and his dear friend pose with Otto.

Found his framed picture to decorate

Proud of his trophy!

Sunday, June 20, 2010


Hi everyone! It's Anthony's loving sister Ashley!! Our mom was too tired to write a post so she asked me. I am happy to say that school is out for the summer. Anthony is just as pleased as the rest of us to be away from desks and teachers! He is also ecstatic each week to go to baseball games every Sunday (except for today, as it is Father's Day), and he loves to hit the ball with a large grin on his face as everyone cheers for him. And the greatest news is that he LOVES running around the bases! He likes to practice outside as long as the weather lets him.

Anthony's new favorite game to play is "Police." I think the name explains it all! He says he's the "cop", then points to one of us calling us the "bad guy." Then he chases us around the house with his Nerf gun and "handcuffs," which are really just him putting your hands behind your back and making locking noises. But when the tables are turned and he's the bad guy, suddenly the handcuffs don't work!! And his favorite TV show now is "Full House." He made up a dance that he performs at the theme song, so long as the girls let him.

Well that just about sums up our summer vacation so far. Next month, we're packing up to go to Seattle for four days of family bonding and fun. Stay posted for updates on the rest of the Black family's 2010 summer! Bye!
~Ashley (daughter #4)

Sunday, April 18, 2010


One week from today Anthony will be 7 year old! UGH.....time is flying by way to fast! Our children get a birthday party with friends every other year and this year is Anthony's year to party with his family. We will let you know the details of how Anthony decides to spend his day and what he requests our family has for dinner. Now to figure out what to get him for his birthday.....shh don't tell, but Virginia & I did get him a little something today.

The weather has been beautiful here! So, perfect the children have been enjoying the great outdoors playing soccer and practicing their basketball skills. It was so cool that one of the neighborhood boys invited Anthony to play in his front yard with him. Anthony's little friend lives right across the street from us, so we watched as these two played together. It was so priceless to watch the neighbor boy practice batting with Anthony. I am thrilled that Anthony has developed a friendship over the years with this little guy, but even more thrilled Anthony was invited over to play! Now I need to teach Anthony how to have a friend over and invite this neighbor over.

Stay tuned for an update following Anthony's birthday!