An Autism Christmas

24 12 2011

For families with kids with autism, Christmas is a challenging time. Many children with autism have co-existing diagnoses, like sensory integration disorder. This is a neurological disorder that was first studied in-depth by A. Jean Ayres, Ph.D., OTR. Dr. Ayres describes sensory integration as the ability to organize sensory information for use by the brain. An individual with sensory integration dysfunction would therefore have an inability to organize sensory information as it comes in through the senses. To give you an example, many children with autism who can speak will tell you that fluorescent lights hurt their heads. They can actually hear the noise made by these lights and it causes pain within their bodies. One of Patrick’s responses to this disorder was that certain noises he would hear would make him dry heave and eventually throw up. We noticed this response with changing the plastic bag in the garbage can, lawnmowers, leaf blowers, etc.

We were ill-prepared for his second Christmas morning (when he had just turned 12 months of age on December 17) when we had him try to open a Christmas present. Apparently the sound of the tearing paper had the same effect for him. I’m thinking this is NOT normal. Kids do not throw up opening their presents. I added that to the list of “weird things about Patrick” that I had begun gathering.

That Christmas it was more of a curiosity for me, as he had not yet been diagnosed with autism. The scientist in me wanted to see if I could correlate a direct relationship between the two items by running several trials to see if we could reproduce that at different times and settings. There indeed was a direct correlation.

When the third Christmas came around, he was age 24 months. To see it happening again brought grief to my Christmas as we had gotten the autism diagnosis 6 months prior.

By the fifth Christmas morning, my heart could no longer bear the pain Christmas morning brought. My husband and I decided that on Christmas Eve after Patrick was in bed, we would open our gifts to each other and that others gave us so that when Christmas morning came, we would no longer associate it with a grieving heart.

As we worked with him on overcoming his sensory obstacles, we would try one present. He would tear it once; we would put it away and come back to it later. For many years, we practice this same ritual. Eventually he could tolerate the noise, but the look on his face said “chore” versus “joy.”

Four years ago, things suddenly changed for him. We were opening a gift on Christmas Eve and he looked curious about it all. We asked him if he wanted to open some presents with us. He gave us a huge smile and sat down with us. He would rip the paper and act like he was startled and would begin to laugh hysterically and clap his hands. He had recently begun to like the feeling of an adrenaline rush and loved being scared and startled. The tearing of the paper scared him, he experienced a rush of adrenaline, and he liked that. WHO CARED? My child was opening up a present and enjoying it.

Patrick opening gifts.

Patrick opens his present one piece at a time.

We allowed him to open up every single gift that evening, and then Christmas morning, he got to do it all over again (because we rewrapped everything). The next year, the number of gifts under the tree was less, but that did not stop us. We wrapped up old toys, put current clothes in boxes, just so we can experience the magic for which we yearned almost a decade. Christmas is about miracles, big and small. This time it was the simple act of opening up a gift about which others do not think twice.

Find the joy of in the simple act of ripping off the paper of each one of your gifts this year, one small piece at a time.  Savor the moment.  Don’t take that experience for granted.  Remember that others in the world cannot simply open a gift that you do without a second thought. 

Happy Christmas Eve.






Matthew’s Gift

13 12 2011

I was told I was going to have great difficulty getting pregnant. Once my husband and I were married we started trying to have a baby right away. I was surprised when it didn’t seem to take that long; however, my baby had died secondary to complications of triploidy in utero in my 2nd trimester in August of 1993. One day I went for my regular doctor’s appointment and they couldn’t find a heartbeat. I had no signs that I had miscarried so it was quite a shock. On the autopsy, they determined he was male. We named him Matthew Joseph (Matthew because it meant God’s gift, and Joseph because that was Jeff’s dad’s middle name). In just a matter of 5 years previous to this, both of my parents died, along with my grandmother and several other relatives. This grief, however, shattered my soul; a piece of me died with him. I had called my church for spiritual guidance regarding customary funeral rites for a baby that was not baptized, or if a baptism could be arranged, but no one returned my call; I felt abandoned.

Although soured on organized religion after this, I still had great faith. I often spoke to Matthew, asking him if he could just send me a sign to let me know he was okay and he could hear me. I knew he was in heaven, but there is another level of you that wishes you could have a conversation with them. I never even had the opportunity to hold him. Touching my lower abdomen, I whispered goodbye, as a tear fell from my eye as they put me under anesthesia.

We planned to go home to New York that Christmas. In the early part of December, Jeff and I talked about snow and how lovely it would be to see. Jeff reminded me that Long Island rarely got snow, and even more rare on Christmas. Without thinking I said to him, “Matthew said he would make it snow.” I have no idea why that came out of my mouth, but inside me, I just knew it was true. Jeff gave me “the look”, the one that said I was setting myself up for heartbreak, but didn’t try to dissuade me too much, only to say, “Don’t get your hopes up.” I looked at him with an unshakeable faith: It…WOULD…snow.

Early Christmas Eve day, his family gathered and opened gifts. Seeing the children opening their packages was heart-wrenching to me. I had to excuse myself quietly to the bathroom multiple times so I could cry, but did not want them to know I was tearful because I did not want to sour their Christmas experience.

The whole week the weather person said it was going to snow, then it wasn’t going to snow, then it was going to snow, and the final word was “definitely no snow.” Still I looked at Jeff and said, “Matthew said it would snow.” He remained quiet, knowing how much my heart was aching. I think he was preparing himself for the emotional mess that ultimately was to come when it didn’t snow.

His sisters had gone out to their friends’ houses. His mother, father, Jeff and I were sitting in the den in the early evening. The den was connected to the garage. We sat there, watching something Christmas-related on TV. After hearing what sounded like the automatic garage door opening, we were expecting to see one of his sisters walk through the garage door into the den. We waited…and waited. His parents wondered what was keeping whoever it was that just pulled up from coming inside. I walked to the window to see if maybe they were outside. Instead I saw it was snowing.

I gasped. “IT’S SNOWING!!!!!!!!!!!!!!!!!!”

If it had only been me who heard the noise of the garage door supposedly opening, I might chalk it up to wishful thinking. Jeff’s parents heard it, too. Had we not heard that noise, I would have missed the snow. None of his sisters had come home and would not for quite awhile.

Without a coat and without shoes, I ran out of the back of the house and let the snowflakes fall on my face, and I whispered, “Thank you, my baby. I love you. Merry Christmas.” I looked at Jeff and said, “Now do you believe?” He burst out in tears, happiness mixed with grief. Jeff’s parents looked at us like we were crazy. When we tried to explain, we sounded even MORE crazy.

It seemed to be letting up and I yelled, “Keep it coming. We’ll be right back.” I told Jeff we needed to go get our coats on to come out here to fully enjoy the moment. All of a sudden, it started snowing more heavily.

If anyone has seen a large-flake snowfall, the snowflakes seem to silently hit the ground. There is a sense of peace, awe and beauty surrounding nature’s majesty. Even the air is different, soft, like a whisper.

We went inside, bundled up, put on shoes and proceeded to go for a walk around the pond. We had a good talk, a good cry, and a good laugh. Our spirits were renewed.

Midnight Mass had never been more beautiful to me than that night. Matthew gave us one of the best Christmas presents we had ever received. Regardless of the circumstances of his death, he was my child and his life was significant for the short amount of time I had the privilege to carry him. Even in his death, his life continues to have significance. And I will always be his mother. The boundary between life and death can never change that. He will never be forgotten. His spirit remains with us…always.





Matthew’s Christmas Snow

7 12 2010

Matthew’s Christmas Snow

I was told I was going to have great difficulty getting pregnant. Once my husband and I were married we started trying to have a baby right away. I was surprised when it didn’t seem to take that long; however, my baby had died secondary to complications of triploidy in utero in my 2nd trimester in August of 1993. One day I went for my regular doctor’s appointment and they couldn’t find a heartbeat. I had no signs that I had miscarried so it was quite a shock. On the autopsy, they determined he was male. We named him Matthew Joseph (Matthew because it meant God’s gift, and Joseph because that was Jeff’s dad’s middle name). In just a matter of 5 years previous to this, both of my parents died, along with my grandmother and several other relatives. This grief shattered my soul; a piece of me died with him. I had called my church for spiritual guidance regarding customary funeral rites for a baby that was not baptized, or a baptism could be arranged, but no one returned my call; I felt abandoned.

Although soured on organized religion after this, I still had a great faith. I often spoke to Matthew, asking him if he could just send me a sign to let me know he was okay and he could hear me. Of course I knew he was in heaven, but there is other level of you that wishes you could have a conversation with them. I never even had the opportunity to hold him because he was not whole. I remember just touching my lower abdomen, and said goodbye, as a tear fell from my eye as they put my under anesthesia.

We planned to go home to New York that Christmas. In the early part of December, Jeff and I talked about snow and how lovely it would be to see it. Jeff reminded me that Long Island rarely got snow. And without thinking I said to him, “Matthew said he would make it snow.” I have no idea why that came out of my mouth. But inside me, I just knew it was true. Jeff gave me “the look” but didn’t try to dissuade me too much, only to say, “Don’t get your hopes up.” I looked at him with an unshakeable faith:  It. Would. Snow.

Early Christmas Eve day, his family gathered and opened gifts. Seeing the children opening their packages was heart-wrenching to me. I had to excuse myself quietly to the bathroom multiple times. The whole week the weather person said it was going to snow, then it wasn’t going to snow, then it was going to snow, and the final word was that definitely no snow. Still I looked at Jeff and said, “Matthew said it would snow.” He remained quiet, knowing how much my heart was aching. I think he was preparing himself for the emotional mess that ultimately was to come when it didn’t snow.

His sisters had gone out to their friends’ houses. We were sitting in the den in the early evening. The den was connected to the garage. The four of us sat there, watching something Christmas-related on TV. We heard the garage door open, expecting to see one of his sisters walk through the garage door to the den. We waited…and waited. His parents wondered what was keeping whoever it was that just pulled up. I walked to the window to see if maybe they were outside. Instead I saw it was snowing.

I gasped. “IT’S SNOWING!!!!!!!!!!!!!!!!!!”

If it had only been me who heard the noise of the supposed garage door opener, I might chalk it up to wishful thinking. Jeff’s parents heard it, too. Had we not heard that noise, I would have missed the snow. None of his sisters had come home.

Without a coat and without shoes, I ran out of the back of the house and let the snowflakes fall on my face, and I whispered, “Thank you, my baby. I love you. Merry Christmas.” I looked at Jeff and said, “Now do you believe?” He burst out in tears, happiness mixed with grief.

It seemed to be letting up and I yelled, “Keep it coming. We’ll be right back.” I told Jeff we needed to go get our coats on to come out here to fully enjoy the moment. All of a sudden, it started snowing more heavily.

If anyone has seen a large-flake snowfall, the snowflakes seem to silently hit the ground. There is a sense of peace, awe and beauty surrounding nature’s majesty. Even the air is different, soft, like a whisper.

Jeff’s parents watched us thinking we had absolutely lost our minds.

We went inside, bundled up, put on shoes and proceeded to go for a walk around the pond. We had a good talk, a good cry, and a good laugh. Our spirits were renewed.

Midnight Mass had never been more beautiful to me than that night. Matthew gave us one of the best Christmas presents we had ever received. Regardless of the circumstances of his death, he was my child and his life was significant for the short amount of time I had the privilege to carry him. I will always be his mother. The boundary between life and death can never change that. He will never be forgotten. His spirit remains with us…always.