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.





Christmas Wishes

20 12 2010

As I sit down to eat Christmas dinner on December 25 with my husband and son, I will go through my 10 or more minutes of crying. When we recount our list of blessings, my list is usually long. This year, it will be even longer. I start off slow, thanking the Earth for the food, the people who planted it, grew it, harvested it, and transported it so that I could enjoy the meal of which I am about to partake. I make sure to thank the turkey for its life. Then the tears come–for the people who are going hungry, who are homeless, who are hopeless, and who are loveless. I may have helped some over the year, but did I do enough? Not likely. There is always more an individual can do. I gratefully acknowledge the people who have sacrificed their lives–our military and the quiet heroes of daily life. I say a blessing to those families who are grieving the death of a loved one; holidays can be the hardest times in their lives. Then I’ll begin to recount all the blessings currently in my own life.

This year I want for nothing, okay maybe except the Adam Lambert new acoustic CD and an announcement that Stargate Universe has been picked up by another network, but all-in-all, I have everything I could ever need or want. My son is thriving at the private school (and we found a funding source for it). The enormous stress of fighting a corrupt school district is gone. I have a husband who loves me and has for almost 20 years now despite seeing the deepest, darkest places of my soul. I have a wonderful golden retriever. I have a loving family, a roof over my head in a fantastic area to live, food in my stomach, a decent car to drive, great neighbors, wonderful friends, and an employer who is continuing to let me try to work each day as much as I can instead of filing for disability. Of course our retirement account was reduced to a 201K from a 401K after the economic meltdown as was everyone else’s, but Patrick’s autism expenses pretty much ate up the rest of it. Somehow I know we will be okay. While I might moan and complain about circumstances every now and again, a swift kick to my rear brings about enormous perspective.

The things I have on my Christmas wish list require the cooperation of others in order to achieve:

1. World peace. Sounds corny, I know, but I’m an idealistic fool who thinks this is actually possible. Before that happens, we will have to get rid of prejudice and hate. In order to get rid of prejudice and hate, we need better educated people.

2. End to hunger: With all the food we have and waste every day, we could feed the world.

End Hunger

3. A cure for autism: Just because I love my son and accept his diagnosis, doesn’t mean I would not want to make life easier for him, and for other parents not to have to even take this journey. The life lessons have been tremendous, but at what cost?

While I am waiting for those things to happen, I will continue to try to do my part, helping one person at a time, one day at a time.

People tend to store their “good will towards men” for just the Christmas season. As they pack away the Christmas decorations, the spirit of Christmas leaves them as well. Perhaps I should dream smaller. Perhaps my ultimate Christmas wish is for others to find the heart of Christmas in their daily lives and keep that siren song alive year-round. Instead of the 12 days of Christmas, we would sing the joys of 365 days of Christmas. Can you imagine what an astounding force of nature we as a people would be?





Keeping “Christ” in Christmas

14 12 2010

Today while going to pick up Patrick from school, I was tailgated by a car in the school zone. Apparently they didn’t appreciate that I refused to go faster than 20 mph. As I went to turn left, it zoomed past me, still in the school zone, I caught the “Keep Christ in Christmas” magnet on it’s rear-end. It made me laugh for two reasons: First is the complete irony of a person who claims to want to keep Christ in Christmas who cannot obey a simple law complete with a total lack of patience. I would bet good money that swearing was involved. Secondly, buying the magnet allowed someone to profit off our Lord and made you buy into the hype.

If only it were this easy to just put a magnet on your car and be done with any other obligations.

Over and over again, I hear, “It’s not a HOLIDAY tree, it is a CHRISTmas tree.” Where is there a Christmas tree in the Bible? If you have a tree up, you’ve already bought into a secular Christmas. If you buy presents for those who have no need of even one more gift, you’ve bought into a secular Christmas. If you bought a magnet that said, “Keep Christ in Christmas”, you’ve bought into a secular Christmas. I always find “what would Jesus think” a good rule. I often imagine Christ shaking his head when he hears such things, saying, “They do not know me.” I doubt He would even want to have a day of His own where we celebrate His birthday. When I read the Gospels, what I take from them is that we are to be walking the path of Christ every day, not just one day a year. We are to model His example of feeding and clothing the poor, ministering to the sick, being compassionate, being at peace, not making war, forgiving others, etc. If you think writing a check or buying a gift for someone less fortunate meets your obligation for making Christmas about Christ, you would be wrong. Christ would never phone it in. If you are yelling about putting “Christ” in Christmas, how are you spending the rest of the days of the year? Are you focused on things about yourself instead of others?

Is it wrong to participate in Christmas then if you participate in both the secular and Christian aspects of it? No. Just stop being a hypocrite about it.

If you truly want to keep the Christ in Christmas, perhaps this is a better road map for spending your Christmas season instead of arguing about a name of a tree:

1. Take time to be alone and ponder your relationship with Christ, not only at Christmas, but the relationship you have every day.

2. Read the story of Jesus’ birth and note how people responded, Mary, Joseph, the shepherds, Simeon and Anna. Remember that every other day of the year as well.

3. Praise God at Christmas and join others in celebrations of music and praise. Continue this tradition every week of the rest of the year.

4. Help those in need. Follow the example of Jesus whose heart was filled with compassion for those who were suffering.

5. Keep your “to do” list as short as possible. Limit your social obligations so there is time for reflection.

6. Use cash when you buy gifts to avoid holiday debt. Invite your relatives to support a charity instead of giving you or your family a gift.

7.  Tell others about our Savior.

8.  Remember Christ’s church (not a particular religion) around the world. Some are enduring great hardships.

9. Live like Christ every day. Be compassionate, forgiving (especially in mall parking lots, SCHOOL ZONES, harassed sales staff, other people being rude and un-Christ-like). Be sensitive to the people in your own life.

10. Be joyful.





An Autism Christmas

9 12 2010

An Autism Christmas

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 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.”

Three 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 sad 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 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). This year, the number of gifts under the tree is less, but that won’t stop us. We will be wrapping 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.

Patrick finally unwraps it.

Find the joy of ripping off the paper of each one of your gifts this year, one tear at a time.