An Unsung Hero, Part II

Pt. II of last week's post. This post written by Janette Hajjar, mother of Robert Pio Hajjar. Excerpt from "The IDEAL WAY to Cook: Food for Thought."

Robert Pio has been our blessing. We have been rewarded with his love, compassion, sensitivity, humour, and wit. His greatest pleasure is to surround himself with the family members who have nurtured and guided him through the years. Rob will gladly give away all he has, yet ask for nothing in return. He judges no one, yet does not realize there are people in this world who would take advantage of his gentle and honest nature. He has never deviated from his daily ritual of kissing us good night and good morning. His dedication to the Lord and Padre Pio is unwavering, and he makes time each and every day to hear mass alone in his room.

Rob has given us such joy and happiness that we could not fathom living without him! Don't get me wrong, he's not perfect by any means. There have been times when he has angered and frustrated me to the point that I have wanted to plunk him on the sidewalk with a "Free for the Taking" sign around his neck! I can't count the number of times I have sobbed because I felt I couldn't do it anymore, that I was tired and burned out. Even at my breaking point with him, and my harsh words, Rob's immediate forgiveness humbles me to the core. Like the innocent child he is, he will open his arms to give me one of his special warm hugs, and all is forgotten. I am reminded, again and again, that I am dealing with one of God's special children. How much gentler and better our world would be if we were more like them.

Growing up, my only exposure to someone with Down syndrome was Roger. This gentle giant lived down the street from us with his elderly parents. I never knew what he did or where he went during the day, and I felt sorry that he didn't have friends his age. What I do remember is how much the children enjoyed following him wherever he went.

If you ask me if I would have terminated the pregnancy back then if I knew my baby had Down syndrome, in all honesty my answer would have been, "I don't know." However, if I knew then what I know now, my answer would be a resounding "NO!"

Parents of children with special needs belong to a "special fraternity" and membership comes at a steep price. Our plane was diverted to Holland; we never made it to Italy. We have travelled a long, lonely road that is not for everyone; one paved with tears, sacrifice, dedication and, above all, patience. "We get it" when others don't. Our universal concern is, "what will happen to my child when I am gone?"

We could not imagine life without our Robert Pio. Our reward at the end of the rainbow is the satisfaction of knowing we have raised our special child to be a proud and contributing member of society, the I.D.E.A.L. child:

Included

Deserving

Equal

Appreciated

Loved

In closing, I would like to leave you with a very special poem that came to me shortly after Robert's birth. I hope that it will touch you as much as it did me so many years ago. [See this post - "The IDEAL WAY to Cook" - for poem.] God bless.

Photo: Robert Pio Hajjar with his parents, El and Janette Hajjar.

An Unsung Hero, Part I

This post written by Janette Hajjar, Robert Pio Hajjar's mother. Excerpt from "The IDEAL WAY to Cook: Food for Thought".

My story could be your story. Robert could be your son or daughter. Our life for the past 31 years could be your life, whether your child is 15 or 40.

A very normal, healthy and easy pregnancy. My little angel fluttered about in my tummy with barely a ripple, while my friends complained about their babies' vigorous kicking movements and how uncomfortable they were. Only once did I feel that something could be wrong. One day, out of the blue, I asked my doctor what my chances were of having a baby with Down syndrome. His reply, "Janette, you're too young, so don't worry."

December 3rd finally arrived and we barely made it to the hospital in a blazing snow storm. Back then, husbands were not allowed to sit in on the birth, so while Elias completed the paperword, I lay there, alone, in that cold, sterile environment. Little did I know that shortly our world would be turned upside down.

Looking up about an hour later, I thought to myself, "This sure isn't like in the movies. Isn't the doctor supposed to slap my newborn baby's bottom? Isn't he supposed to tell me I had a healthy boy or girl and why did I have to ask? Isn't the nurse supposed to tell me what a beautiful baby he was as she laid him on my chest? Isn't my baby supposed to cry? And, when he did, why did he sound like a little kitten? Why was there dead silence in the room? Why was everyone looking at each other? Why were their eyes so sad?" So many whys.

The words from the doctor's mouth could have been lifted from Page 1 of the universal book, titled "Special Needs Births and How to Deliver the Worst Case Scenario"..."Your child will be profoundly retarded; we suggest you put him away, forget about him, and have another baby."

There it was...the "Down syndrome death sentence"! Those very words ripped the joy and happiness from our hearts, leaving us with such sadness, grief and overwhelming guilt. What did we do to this innocent baby? How was he to survive in the world? How would others treat him? How could that doctor know, at two days, that our baby would be profoundly retarded? Does this mean he won't walk or talk or do much? How did he know our baby's potential? IF only we knew then what we know now.

"God gave you Robert because He knew you could take care of him." Those words, uttered by my brother, Jim, literally shocked us to our senses. This young boy's wise words forced us into the realization that no matter what, we still had this little baby who was so dependant on us. Yes, it was time to end the pity party and get to work on being parents to this helpless infant whose future lay in our hands.

[For more information on "Down Syndrome Diagnosis - The First Few Days After the Diagnosis", go to About.com: Down syndrome.]

Photo: Lieutenant Governor of Ontario David Onley presents Robert Pio Hajjar with an Unsung Hero Award during a ceremony at Variety Village, Scarborough, Ontario on December 3, 2009. It was the International Day of People with Disabilities, as well as Robert's 32nd birthday!

Keeping Your Marriage Strong

This post was written by guest blogger, Tammy Lessick, who publishes the blog "Autism Learning Felt" at http://www.autismlearningfelt.com/."

I’ve covered a lot of topics that parents of a child with autism deal with. One topic that I have not covered is how to maintain your relationship as a couple. I don’t know the exact statistics, but I do know that the divorce rate among couples with a child with a disability are higher than that of couples without. I wouldn’t be surprised if someone told me that parents of children with autism have the highest divorce rate.

We spend so much time and energy taking care of our kids, we tend to neglect each other. My husband and I do our best to make sure we have a balance in our relationship with our kids and ourselves. Do we get enough time for each other? No. We do take moments that help us connect with one another.

At home, when one of us is going in one direction and the other in a different direction, we will stop and take a moment to hug. It doesn’t sound like much, and only lasts about a minute, but it means a lot. We take a moment to say “I love you” and have a physical connection, then go about taking care of the kids. If one of us is walking by the other to take care of the latest crisis, a light caress and off we go. In the car, we will hold hands. During meals at the table, we will exchange light touches.

These little moments keep us connected. They let both of us know that we are in this together. We don’t go out without the kids that often. We try to arrange a weekend twice a year, but that is about all we get. After the kids go to bed, we take time to talk about anything that we can not discuss in front of the kids. Then, if we are not too tired, we make love. Unfortunately, it is not as often as either of us would like. If you have a child with autism or any child with a disability, then you know what I am talking about. That is why it is so important for us to make the little connections.

We love each other and our kids. That is the foundation of our relationship. To keep our connection strong, we discuss everything that is on our minds. If something is bothering us or something great happened, we discuss it. It is really important that we let each other know when we are upset about something and why. When an issue is left unspoken, it can fester and grow. The longer this goes on, the harder it is to work out the problem.

Our children need us to be happy and secure in our relationship. It is what allows us to give them the best of ourselves. It is also what gets us through the tough times. Let’s face it, there are a lot of tough times when raising an autistic child. What do you do to keep your relationship with your spouse connected and strong?

We're More Alike Than Different, Part II

Part II of Nov. 26th's post, We're More Alike Than Different, Pt. I. This post was written by Julie Scott-Trask, Oakville, Ontario. An excerpt from "The IDEAL Way to Cook: Food for Thought".


When I moved to Canada in 1976 I went home every year, sometimes twice a year. After mum died, David began to visit me. He came every year in the summer and then twice a year (summer and Christmas). I loved his visits and he loved coming. He adopted my in-laws as "his family" and took great pride in being Uncle David to my children. He held them, fed them and played with them. He had endless patience for their games and they repaid him with their love. These were precious times for me. At times we laughed together until we cried, he amazed everyone with his memory for move stars long forgotten, and I indulged his passion for wrestling by taking him to Maple Leaf Gardens.

As David aged, health issues finally prevented him from coming to stay with me. This created a huge void in my life. Now I go home to England as often as I can and visit him in his home. He lives in a house with up to three friends, all with developmental delays. The group has changed in very recent years because two of his longtime friends and housemates died. They are visited once a day from Monday to Friday by a social worker. Together they form their own family unit. Doreen has been a constant companion. She is retired and in her 60s. Her conversation is punctuated with lots of "Loves" and "Darlins". She constantly reassures me that they look after each other. Having spent time with them, I know that to be true. David's life is rich and full. When I visit him, he fits me into his life just as he used to fit into mine when he came here.

He is everything, and has the life that my parents strove for with their love and courage.

David has always been generous and patient with a world that could not embrace him, perhaps even feared his difference as if it might be contagious, and that often teased and laughed at him. Looking back, it was as if he drew strength from an inner well of knowing that he was loved without measure by his family and friends. Maybe he knew that one day the world would mature and change as its understanding grew?

I know that if the world had David's heart, it would be a very peaceful world indeed.

David is the mirror I look into as I have strived to create meaningful programs for my students these past 11 years. He is a constant reminder that they can and that I must never assume to know the limit of anyone's ability, that they will constantly surprise me if I give them the opportunity.

Big Change Ahead

This post was written by: Tamara Lucas Copeland, President, Washington Regional Association of Grantmakers, originally posted on the following website, Monday November 30, 2009: The Community Foundation for the National Capital Region.

With job losses, home foreclosures and other symptoms of the recession taking a stern toll in the Washington area, grantmakers in the region have worked hard to support efforts by nonprofits to help families ride out the storm. But grantmakers have learned a lesson from this recession, one they won’t soon forget: they need long-term strategies aimed at achieving true systemic reform–not just short-term projects that fix symptoms, but “big change” to fix big problems. Doing that requires that they mobilize the full scope of their assets–not just their dollars, but their unique capacity to bring people together to share ideas and marshal their resources.

A recent survey of Washington Regional Association of Grantmakers members confirms that local philanthropies have taken a hit during the recession, not surprising given that their investments were rocked when the bottom fell out of the stock market. They’ve had to reduce their grants this year as a result, and they expect to do even more of that next year.

Even with all that working against them, grantmakers have begun to implement a new style of giving, one that takes dead aim at the causes behind deeply rooted problems. Such grantmaking is the subject of Washington Grantmakers’ new report, Beyond Dollars: Investing in Big Change: How Washington Area Grantmakers Are Creating Lasting Impact. Focusing on a series of case studies, the report identifies four distinct elements of grantmaking that goes “beyond dollars” to achieve big change:

• Capitalizing on timing and momentum. By coordinating local and regional action with national initiatives, timing action to coincide with groundswells of public sentiment or moments of crisis, grantmakers are translating a vision for change into on-the-ground progress.
  Being a strong voice for change. By creating a platform for affected communities to engage in the policy dialogue, and sharing information with the media, policymakers and others, grantmakers are creating energy to drive change.
  Leveraging key resources. By supporting research, combining their knowledge and experience, and using their dollars to open the door to national and government funding sources, local grantmakers are creating the building blocks for change.
  Building true partnerships. By bringing organizations and individuals together in new collaborations, grantmakers are strengthening the agents of change.

Put into action in recent years, those strategies have made a real difference in the lives of our neighbors in the Washington area. For instance, as The Community Foundation’s September 11 Survivors’ Fund accumulated $25 million from more than 12,000 donors, foundation leaders asked: what will it truly take to help people heal? The Fund locked arms with Northern Virginia Family Service to pursue a case management approach. The two organizations’ intensive, seven-year partnership resulted in a model system of care—case management combined with financial support—which proved better at addressing complex long-term needs than “quick distribution” approaches.

Despite the recession, local funders are continuing such transformational grantmaking. Building on its continuing commitment to direct services, The Community Foundation’s Neighbors in Need Montgomery Fund recently announced support for a new systemic approach to delivering emergency services in isolated neighborhoods in Montgomery County to ensure services are reaching those who most need them. A partnership between IMPACT Silver Spring and the Montgomery County Department of Health and Human Services, the Neighbors Campaign hopes to leverage other community resources to sustain long-term recovery for those in crisis; create a new, sustainable network of mutual support in isolated neighborhoods and increase the number of people embarking or staying on a path toward secure employment and greater economic empowerment. Later this month, The Community Foundation will announce a new round of Neighbors in Need grants aimed at strengthening the safety-net infrastructure and system through which safety-net services are provided.

Grantmakers are continuing to provide dollars to feed the hungry and provide medical care for the poor, and in countless other ways to care for those in need. But they’re also taking aim at the broader causes of such problems, using all the tools available to them. The saying goes that if you give a hungry person a fish they’ll eat for a day, but if you teach them to fish, they’ll eat for a lifetime. What grantmakers are beginning to do is more akin to restocking the river with sustainable species of fish! Such strategic grantmaking is where foundations are headed, indeed, where they absolutely must go. The recession won’t prevent that. In fact, it makes the transition all the more imperative.

Giving It Some Thought

Photo credit: ➨ Redvers