Friday, December 25, 2009

Christmas 2009

                     Before                                                                               After

Here are some more pictures from our Christmas Day. We missed J very much, but have had a good day nonetheless:

Christmas blessings to you and your family. And, before I forget, Happy Birthday to Baby Jesus.
Merry Christmas to all and to all a good night!  

Sunday, December 13, 2009

Lights, all shiny and sparkly

My kids are the lights of my life. They make me laugh. They drive me a little mad sometimes, but they are the most amazing "little" people in the world and I would do anything for them. These four creatures constantly remind me of what is truly important.

Christmas is just not that important to me.  I just can't take another holiday of people I know, people I have known for years, giving their dad money or stuff for the kids and ignoring their mom's existence.  It came out casually- that dear friends of my family had sent him a Kmart giftcard. I don't think he has ever bothered to ever speak to them ever, yet the pity party continues for poor him. As he and I have discussed, he chose this course and he has to live with the consequences. I could see the look of surprise and perhaps a little jealousy when he saw my new car. Like he has anything to be jealous of.

One of the best life lessons I have learned came from a program I never wanted to go to. The graduation last week was one of the proudest moments I can recall. I not only accomplished something, I was recognized by a lot of people who I never would expected to say something nice about me. Yet they did, lots of people offering compliments.  I was given a beautiful bouquet of flowers. I, whose life has been in utter chaos since a cold, sunny March afternoon 3.5 years ago, was celebrated. People said I had enormous insight to offer other moms, and was providing needed mentoring for at least one of them. All this recognition came from simply being a mother.

There's this great quote that I apply to all relationships in my life.

"Never make someone a priority, when all you are to them is an option."
It's pretty clear that in the past I did exactly that and I will never do that again. My most recent entry into the dating world is a perfect example. How I seem to attract single dads with major "baby mama drama" is amusing. I've had what I thought was a happy and healthy relationship, I think I know what that feels like. It's not worth my time or effort to have anything less than that. I said good-bye gently but firmly. I feel great about myself. I kept the big picture in the forefront of my mind, that same big picture which got so clouded three short years ago.
We will march on towards Christmas. My kids won't be with me Christmas Eve, a night which has memories I can't erase associated with it that go far beyond years of tableaux appearances (of me and the kids) at our church. It's up to their dad whether or not to bring them to church and celebrate Jesus's birth.  I've been invited by a few friends to spend Christmas Eve with their families, but, while the gesture is very sweet, the absence of my own family makes me want to stay in.  Thanks to some special friends, the children will have a few nice things to open on Christmas (afternoon!) here. We have a cute little tree up (artificial, I'm afraid) and stocking hung from the windows.  The little girls really want the cats to have stockings, I am afraid they will be disappointed.  It's just another day to me, but I hope the kids feel the magic of Christmas.

For now, on this cold, rainy night, I will enjoy a nice drink, the rest of the Sunday paper, 60 Minutes in the background, and watch the lights of the Christmas tree sparkle.

Friday, December 11, 2009

Holding on to hope

Seeing your child in pain is the most awful feeling in the world.

I love this picture. It reminds me of how happy she *can* be when she knows she is loved. What a beautiful, vibrant, smart, funny, and interesting 12 year old. She LOVED her party and I am so thankful for the good friends who celebrated with her.

Wednesday, December 2, 2009

Loving someone else's kids...

... or at least liking them a lot for the evening.

I babysat for a friend's kids tonight and we had a blast. I forgot how much energy a toddler has and just how sweet a preschool girl is.  I also remember that I do not miss the days of cut up hot dogs in pasta, Danimals and Trix yogurts, and a dozen different kinds of sippy cups.  We created trains and tracks, we built up block towers and knocked them over a dozen times, we played with Mickey and Minnie Mouse dolls, and had fun with glow in the dark bracelets.  We colored, we did a few puzzles, and watched Calliou and Noddy.

We read "Goodnight Moon" (which I know word for word by heart), "The Going to Bed Book" by Sandra Boynton (my kids loved it!), and "Goodnight Gorilla" (another Collins kid favorite).  There is something nurturing and peaceful about putting kids to bed after reading a story and having them sit on your lap with a sippy cup.  It was truly a fun and happy evening.

Sunday, November 22, 2009

Christmas pictures

We used to get formal Christmas card pictures taken at Target and the Picture People every year and they came out great. However, the past two years, we have used pictures from the digital camera.  This year, we couldn't include Miss J, which caused a lot of sadness for me at least, but I managed to get the other kids looking snazzy. With their new haircuts, S and A looked awesome and E, as usual, looks like she may have a future in modeling.

Suffice it to say, this photo is the best one we could get, and it's not great since Andrew looks like a cross between miserable and perplexed. Actually, it's more a "Mom, can we be done yet PLEASE???" kind of look.

I ordered Christmas cards online, along with address labels. I've been wracking my brain trying to figure out, with our extremely limited finances, how to even buy an X-mas tree with a stand, more or less a few presents for each child.  It's not a warm and fuzzy feeling to feel like a charity case, especially knowing in my former (married) life, we never worried about stuff like this.  This Christmas Eve, the kids will be with their dad and I hope they get to be in our church's tableaux (Em was a sheperd last year and she is angling to be an angel this year). 

Christmas music doesn't bother me, in fact I really like it.  I am helping again with the Wish Tree again this year and that always gives me a lot of joy to help so many needy kids. I think it must be programmed into me as being something I do every year. Now that I'll be living back near the Mall, it will be especially easy to help out.

But, I am getting way ahead of myself.....

Best wishes to you and yours for a very Happy Thanksgiving filled with many blessings. 

Monday, November 16, 2009

Our autism journey

My son was diagnosed with PDD-NOS (a form of autism) 7.5 years ago. We were not surprised by the diagnosis, as we knew it was coming from previous appointments with the neurology team at MGH. In fact, I was grateful for it because it allowed Andrew to receive more intensive Early Intervention services. I didn't even bring another adult to the appointment, I had Andrew and his sister Emily with me. I got the prescription with the diagnosis and drove home without feeling much. I then called our EI service coordinator (Lorraine, I love you) and his pediatrician. It was later that night that I broke down. I cried so long and so hard I started getting Braxton-Hicks contractions (I was 30 weeks pregnant). I didn't blame as I am confident vaccines had no role in Andrew's autism. The lack of blaming "someone" or "something" is, to this day, one of the best ways I identified to cope.

The months that followed of intensive EI, Floortime therapy provided by Building Blocks, was a blur. In the middle of all of it, I gave birth to Sarah and Andrew transitioned to our public preschool occurred. When he was tested by the school, he had a few words, some signs, and very little receptive language. He was a hugely sensory kid who responded well to deep squooshes, being wrapped up and swung in a blanket, and a wonderful bear-hug vest. He was also very loving and did make eye contact with adults. Yet, he was very clearly on the spectrum.

Like nearly every other mother of a preschooler with ASD, I quickly became disillusioned by the programming offered by our school district. Knowing, but not accepting, that the mandate for services from a public school under IDEA is very different from EI, I pushed back. I advocated, I complained, I cried, and I wanted to change the rules and law and make them more friendly to families. I was so stuck with being angry and discontent (and in actuality the district didn't have an individualized program for kids who were somewhere on the middle of the spectrum as my son was with nearly all kids who were completely non-verbal), I lost a lot of perspective.

It's all well and good to be able to identify that life is unfair and systems don't always work effectively. After all, I was a savvy systems person. I was excellent at getting needed supports for my family: Commonhealth (state insurance which supplemented the private insurance from my husband's employer), reimbursement for the private insurance through the HIPP program, DMR supports (including flex funding for respite and a behaviorist), and pull-ups delivered to our door paid for by insurance. There was private speech and OT at Healthsouth, trips to the audiologist who had detected some form of hearing loss, switching pediatricians until finding one who specialized in developmental pediatrics. Add on to that constant communication with the school, team meetings every 6 weeks, independent assessments and appointments (like a neuro-pysch and a play therapist), as well as activities in the community such as "My Gym". It was exhausting, but my little boy started to talk.

Yet, I remained angry and frustrated by a system that was not set up as family-friendly. I gained weight. Only in my 20's, my hair started turning gray. I turned to food for comfort, I relied on friends for guidance and support, and autism became my world. With two exceptions, to this day, all my friends are moms of kids with special needs. My own family was tone deaf in many ways about the autism, only concentrating on the gains and happily giving him back when he had a hard time.

What I realize now, having been forced to take a few steps back and now watching my ex make his own poor decisions (he overly trusts and our kid has lost a lot because of it, including home based ABA) that hopefully he will learn from, is that I wasted so much energy and time being angry at the system. I work with many families of kids with autism and can see glimpses of the old me in them. I remember having the I want it "all or nothing", "my way or the highway" mentality for many years. While I don't think the school was always right (in fact, the concessions they did make over the years such as a 1:1 aide and an outplacement for summer services to give Andrew exposure to typically developing kids, do illustrate they realized they might have been wrong), I do now realize how pig-headed and foolish I was. I know I was right about a lot, after all Mass Advocates for Children took Andrew's case and got good results.

I am also keenly aware that one has to maintain a civil relationship with their school district, utilize the mechanisms offered via due process, and not make it personal. I am ashamed of how hard I was on Andrew's preschool PDD teacher and on the integrated preschool teacher who deftly worked with all 4 of my kids. I wasn't trying to be mean or difficult, I was hoping they could make a miracle happen and that my kid would be the 1 in 10 kids diagnosed with PDD who loses the diagnosis by age 6. Until I started working in schools and closely with teachers, I thought they were the "enemy" and only puppets of a sped administration. While they do have to be careful what they say, I forgot these people choose these careers because they love kids and want to help them. Their strategies didn't always work, but I think they truly cared about my kids being successful.

When I talk to clients who are at the stage I was at those many years ago, I try to get them to focus on choosing their battles. Special education law is written to benefit the school district, who has more money than any parent, and their lawyers on retainer. They routinely ignore independent assessments and never give them equal weight of school assessments. Services are often reduced or not offered (where my job comes in) when kids do need them. I get all of that and some districts are much easier to work with than others. If I can share any wisdom beyond telling parents that your instinct about your child allows you to be the best advocate possible, it's that you have to work in the system provided. If you refuse services because they aren't what you wanted, it just will reflect badly on you in the future. Mainly, if you have real concerns, take them to mediation and try to resolve them. Don't spend years/days/months complaining without being proactive.

Having a child with autism is not fair (in context, it's even more unfair to your child who has to live in such an overwhelming world). Do the best you can to advocate (even if it means filling out (5) zillion page forms from the state for services), apply for the programs available which can help your family (PCA hours, respite funds), and make sure to do fun things for yourself (ie: a date night with your hubby, a shopping afternoon with your friends, going to church to worship on Sundays if you can, taking a walk by yourself). The more balanced and happy you are as a mother, the happier your kids will be. Yes, kids with autism will still scream and you won't know why, they will still have meltdowns at the grocery store/park/drop-off/church, they will still need visuals and other communication to support their learning and communication... These things we don't have control over.

What we do have control over is taking care of ourselves and fighting the good fight in a way that we can be proud of. I am very proud of the fact that, with the exception of only 1 school staff member who thankfully no longer works for the school and was nice but hardly effective, each and every home provider who my family has worked with is someone I consider a friend and who, to this day, is supportive and kind and tells me what a good mom I am. (In my case, I was married, but all the autism-related "stuff" fell to me and me alone). I am not criticizing anyone as I've lived all I have written about, but know the journey can be a little smoother when you accept the mediocrity of the system, and work to change it while working side by side with your school and providers.
Andrew as a bear, dressed up to give out candy, Halloween 2009

Tuesday, October 20, 2009

When your cats are your bedfellows...

In June, after much ado, we got two middle-aged cats. Maddie and Kitty were well-deserved gifts for the kiddos. If you know me, you know I am not an animal person. My pet owner karma was also pretty bad, as the two attempts to keep fish alive were both unsuccessful. I even managed to kill beta-fish. How do you do that?

I never aspired to be the lonely old woman who loves her cats more than anything. For the record, I love my kids more and I don't think I'm that old. However, these two curious creatures have become a source of amusement and comfort for me.  They are not kittens, which makes them a better match for me. Their history is a bit convoluted but it's thought they are mother and daughter. Kitty, who is nearly all black, is quite friendly and loves to play. Maddie, gray and grumpy, is more of an observer. Interstingly, both Julia and Andrew seem to really enjoy Maddie and she serves as our resident "therapy cat".

The nights the kiddos as with their dad, the cats instinctively know they are welcome to jump on my queen sized bed and get comfortable. Admittedly, it's pretty pathetic that my bedmates are felines, but they are much less trouble than men IMO. The benefits may be different, but they are always there purring and happy for the love and attention.

Am I destined to become a crazy cat lady? Perhaps. There are worse things in life, right???

Thursday, April 23, 2009

S's Birthday

Today, my baby turns 7. How time has flown, I still remember like it was yesterday holding her for the first time. I looked into her eyes and fell in love with this tiny person.

It's true that S's siblings didn't seem fazed by her arrival (I recall Julia hiding under the chair in my hospital room). I took out the pictures of our time in the hospital and was struck by how happy Will and I looked. With Em, we were stressed, with Andrew we were utterly exhausted after the delivery. With Julia, we were happy but also very tired (those darned inductions...). With Sarah, we looked happy, well-rested (I was still glassy-eyed from the drugs), and content with this new little person. That night, when my family had gone, my friend Kim came. I was intent upon recovering quickly and knew the best way to start on that track was to get up and walking. Walking down the corridor of the postpartum unit felt like the longest walk ever, but I did it. We had a nice visit. A good way to celebrate the day Sarah came into this world all around.

The many hours feeding her, just the two of us together as the months passed, were so special. She was an easy baby, which was good because it was a difficult time with Andrew just being diagnosed with autism. I would get her up every morning and sing her a silly little song, which always made her giggle and smile.

Sarah is a beautiful little girl who has the most energetic and fun personality. True to form, as the baby of our family, she fights for everything and doesn't want to be left out. She and Emily, though neither will easily admit it, share a very special friendship, too.

Happy Birthday, my "baby" girl. Thank you for coming into our lives and bringing so much joy and laughter to it. I love you very much.

Monday, April 6, 2009

Autism and Jenny McCarthy

Last Friday night, I was getting the kids settled for bed and Larry King Live was on. The subject was Autism, and the featured guest was Jenny McCarthy, she of Playboy Playmate "fame". She and her boyfriend, comedian Jim Carrey, were attempting to make the case that vaccines cause autism. Furthermore, they claimed autism can be cured with invasive bio-medical treatments.

My sheer frustration led me to write the following on Facebook: "A shot did not cause Andrew's autism". I got great responses from friends. "amen, amen, amen. As a scientist, I am so tired of people completely distrusting my entire profession. We do not work for the government to cover up conspiracies!" (from my friend who is a researcher at the NIH). This one is my favorite (from my friend the pediatrician): "thank you thank you thank you...the bane of my professional existence is a stupid playboy playmate!!!!!"

Of course, this appearance has now become THE discussion on autism web-groups. Once again, it's the "us vs. them" mentality coming across and that is a shame because all we should all want is to support our kids.

Here is a FACT pulled from the CDC website:

Since 2001, with the exception of some influenza (flu) vaccines, thimerosal is not used as a preservative in routinely recommended childhood vaccines.


There is no mercury in vaccines now. In fact there hasn't been for 8 years, yet far more kids are being diagnosed with autism. The mercury is gone. So, what's causing the increase in diagnosis now? Hell if I know. And, vaccines save lives.

If Jenny McCarthy is your role model, all the more power to you. I suspect she is making millions of dollars writing her books and getting lots of screen time giving families false hope (and she is not funding their kids attempted "recoveries"). Her "career" had kind of hit a big lull before she told the world that her son had autism, hadn't it?

Some kids develop to the point where the diagnosis is no longer applicable, with or without having gone through bio medical interventions. Some kids never make the gains with or without bio-med treatments. Believe me, if there was something proven to cure my little guy, I probably would have tried it. (Or were we too busy driving to outside speech and occupational therapy and play/social skills group?)

When Andrew was diagnosed in 2001, it seemed our LIFE revolved around autism, getting quality school programming, etc. I think most of us with kids approaching double-digits now realize we were pretty darn hard on the preschool teachers in public school systems that had "one size fits all" programming, since the team actually cared a lot. They didn't have the resources to always do what was best practice. And the speech therapist got my kid to talk- I would do anything for Valerie!

Getting an official diagnosis and intensive services put in place and the transition from Early Intervention to the public school for my family happened during an already *crazy* time. February: Official diagnosis from Mass General (had a provisional dx the 6 months before). February-March: Getting Floortime services and more intensive speech and OT in place. April: new baby born. April-May: school testing and initial TEAM meeting. August: Andrew turned 3 and EI ends. September: Preschool starts. When autism came in our life, our family's life was already pretty full.

I would have borrowed $$$ to finance a "recovery" if one existed. But, the people involved in my son's care, including Dr. Martha Herbert, all told me that the chance that vaccines caused his autism were slim to none. My husband and I chose instead to focus on improving his quality of life. I also started working in the field, helping other families and kids who live with autism every day. I had to let the anger go... and all this bio med stuff DOES NOT have the success rates of rehabilitating a kid who can't walk because of an accident or getting a kid into remission who was diagnosed with leukemia.

Autism can be very cruel. It is also something a family can deal with effectively, or choose not to deal with at all. When our family was one unit, Andrew had friends and kids who wanted to play with him. He was invited to birthday parties, he took a gym class, and had a great team of assistants and behavior specialists. Now, things are different and he isn't thriving at the same level. It sucks to see.

Yet, he is conversant with adults and he is so smart and there are moments when he is very, very happy. He knows he has to say sorry when he does something to hurt his sisters or after he has a tantrum. He "gets" things because his thought pattern is more developed.

Autism is not as simple as Jenny McCarthy would lead you to believe it is. There is no "one-size-fits-all" treatment or cure. I know Andrew tries very hard and we are very lucky to have him, just as uniquely hard-wired as he is, in our family's life.

Saturday, April 4, 2009

A puppy and a butterfly

The kids had a blast at The Giving Camp today. The brother was too shy for his photo op, however! We had so much fun looking at the GC's website and seeing pics of the kids from other camps in 2006. Even the girls handwriting was fun to see and Andrew had a short haircut and you could actually see his whole face :-)