Happy Holidays bonus.

The second clip has Maddie at a restaurant. Maddie loves to eat out but it’s always risky when she goes to one as you can’t control the atmosphere like at home, so there’s the potential that something could go wrong.

I can tell you I rarely risked going out when her twin siblings were younger, because as a group they were way beyond what one person could handle on their own. It’s only recently that I’ve been brave enough to go beyond McDonalds. This still happens very rarely, though, as we don’t have the scatch to go to a restaurant. I did it today because I knew Maddie was going to go bonkers staying inside, plus since I was taking them by myself, I knew I could cover 3 kids meals, especially since I had a 10 off 30 coupon!

The overwhelming costs of a child with some type of disability makes eating out a total luxury (unless you are ordering off the dollar menu.) Some weeks I look at the heavy bills we’ve accrued and think we should be standing in line for some government cheese. But we manage…

The restaurant visit went well for the most part. Maddie had a couple of moments and I’m sure I was too quick to get on my twins, as when you are dealing with autism, you expect too much out of others. I mean, these my twins are 5 years-old. Sorry guys. I hope some day when you read this you will acknowledge Daddy was working on a thin edge.

Today I give you a double shot of Happy Monday. This is Maddie in the morning and she is a little agitated because of the lack of schedule in her life, since winter break has school on hiatus. Maddie doesn’t play with toys or watch tv, but she will sometimes do imaginative play. One of the big themes for her is putting on a few layers of clothing. It’s a sensory thing.

Sometimes it takes a song to help you remember to Keep on Smilin’.

I hope things are going well in your life. Our family has had a rollercoaster year as usual, but that is the way life works for us.

Career wise my standup career made a big turn, as I wrote a new, very personal show about how much I’ve learned from having a child like Maddie–a child with special needs. It was kind of scary discussing some of the raw emotions involved, but challenging myself to do it has been very personally rewarding. I have never had so many people come up to me after the show and express their appreciation. I am working on a book based on this show and just recorded a DVD of it. I began my 10th year as part of the writing staff for the NFL on FOX pregame show, but was bumped off the payroll mid-season. I’m proud of a lot of sketches the show has done during my tenure and left on good terms.

Maddie is 9 and the tallest person in her class. She loves basketball and swimming. Her autism brings many unique challenges. Behaving like a 3 year-old when you look like a 12 year-old is difficult to deal with for people who don’t know her. We continue to try to be like chess masters, trying to anticipate a few moves ahead to keep her from being distressed.

Speaking of exhausting, Sam and Mallory are 4. They continue to be the Dallas Cowboys…Great individually, but stink as a team. Sam is starting to come into his own. He was 2nd leading goal scorer on his soccer team, but I think he could care less. It’s hard for me not to push him, growing up with a Dad like Bob Knight, but I’m trying (not always succeeding) at letting him follow his own path. Mallory is dramatic, aggressive, athletic. She’s the girl that wants to wear a princess dress while kicking your ass. I fear what a 15 year-old version of her will be like, but I can’t imagine she won’t be the best she can be.

Our private health insurance continued to rise to the point where it was over 500 dollars more per month…than our mortgage. We reached a financial crisis situation where we had to make a decision, so Susan boosted her hours to full-time at Propeller Marketing, so we cut our insurance premium in half. Our deductibles are going to skyrocket with it, but we had no choice. We are very fortunate that Susan has a great boss who she loves to work for. You will notice from our annual photo montage that Susan looks 10 years younger than her actual age. 25 years into our relationship and my respect for her continues to grow.

The family highlights were our trips to Disneyworld, Oklahoma City, and our annual vacation week in Door County. Our crew actually is at its best when on the road. Maybe they share my travelin’ man instincts. Well that is what I have time to share this year.

Happy Holidays.

I can’t find a copy of our yearly letter from 2011, but here is the year in pictures from us.

These twins are LOUD!!!

(This is the annual Holiday letter I send out to friends and associates.  It features on how life in 2009 treated me and my family. I mass email it so I’m sorry if you get this and don’t know much about the players in my Lifetime TV movie of my world.)

So, let’s start with the good news.  In 2009, no one in the Long or Ross family died.  Considering the past couple of years of family heartache, this is quite an accomplishment for us!  Now that we have gotten the good news out of the way, let us offer up that the first 9 months of 2009 were more taxing than the IRS.  We knew that being in our 40’s with twins was going to be a severe kick in the rumps, but it is hard to explain how constant it has been.  Add to this that Maddie has been tougher to take care of than 1 year-old twins…combined.  I’ve been predicting August 2010 being the magical date when we get a somewhat more normal life.  This is when the combined forces of all-day school for 1st grade Maddie, plus the twins being able to play on their own just might mean we could consider reading a book that doesn’t include the phrase “there’s a wocket in my pocket.”

The most perceptive might have picked up on how I mentioned the first nine months being the worst, this is because we found a new medicine that has made a big difference with Maddie.  While it hasn’t been some kind of magical elixir, which heals like the fingertips of Oral Roberts, it has managed to bring Maddie down from her 100 mph to around 90 mph.  She still can’t concentrate enough to watch any TV, but it has allowed her to keep a little better control of her emotions.  The best part is she has been speaking much more clearly, allowing her to greatly increase her communication.  This is really exciting, as we knew Maddie has lots of interesting things to share. Her 3 favorite imaginative things to do are to pretend to ride the bus, play doctor, and go to the hair salon.  Oh, and here’s a shocker.  Maddie is the class clown.  I have no idea where she would get that.

NOTE: The CDC just announced new findings which show that 1 out of 100 children are now being diagnosed with autism.  This is truly startling and sad news.  Susan and I both believe that Maddie’s autism has made us better people on many levels, but if truth be told, it has negatively impacted us on probably as many levels.  I guess that’s the way life works for parents of children on the spectrum.

Sam is a beautiful, sweet boy, who has an ornery streak that at this point is generally adorable.  We realize that this adorability could waiver as he gets older.  He has been slower to meet his developmental milestones in comparison to his twin, Mallory, which has caused some heart palpitations for his parents.  When you have an older child with autism, you have an extreme microscope on their siblings.  Sam is somewhere between his 2 sisters in regards to his development at the age of 21 months.  He has made some positive progress in the past couple of weeks that has helped us feel a bit better, but my guess is we will battle our fears for a while more.

Now we come to Mallory or the alias she goes by at our house, THE PISTOL.  Mallie is feisty, opinionated, confident, and sensitive.  Quite a mix.  She loves to read books and watch TV.  Her favorite friends on the planet are the Backyardigans and Mr. Rogers.  (Sam likes Fred, too, and is a big fan of the Trolley.)  Sam and Mallory are twins in last name and birthdate only.  They look very different and have very different personalities and likes.  We think that makes for a good mix, as they complement each other.

Like most others, the standup comedy profession has been negatively impacted by the economy.  The biggest hit has happened in the category of corporate comedy.  I guess it’s kind of hard to justify having a comedian at your company’s holiday party when you’ve just laid off 10% of your workforce.  I’m in the midst of my 7th year writing comedy sketches for the NFL on FOX (Frank’s Picks) and it’s been a really good year on that front.  I also wrote a some material for Frank Caliendo when he hosted the NASCAR Awards Banquet.  I would like to thank Bret Farve, Ocho Cinco, the Lions, Rams, Bucs, and especially the Raiders for all they’ve done to make my job easier.  Oh, and I almost left out Tiger.  Thanks buddy.  Let me also mention that I’m getting started on a potential book project that I’m excited to do with my former blogging partner, Will Carroll.

Here’s my favorite story of the year.  I go get a physical and my doctor says everything looks good except my cholesterol has risen.  He says my weight is good and I seem healthy, so he then asks if I have been under any extra stress lately. I remind him that I have 15 month-old twins (at the time) and a lot of challenges with Madeline (we had discussed this 5 minutes before). My doctor then says I need to get more sleep.  (Uh, did I mention I have twin toddlers?)  He told me I needed to consume less caffeine. (Yeah, like that’s gonna happen).  Finally, he mentions that I need to start eating a low-fat, low-sugar diet.  I explained that in my current predicament, one of the few pleasures in my life are pizza and cupcakes.  I mentioned,”I think it’s time to get your prescription pad open and dole me out some Lipitor.”  I mean really, if you’re a man over 40 and not on some type of statin, aren’t you kind of light in the pants?

If you weren’t aware, Susan is pretty amazing.  Her motor has had to run on high from each moment she wakes up to each moment she goes to bed.  Our children are very lucky to have her as their Mom.  She also is pretty easy on the eyes. Just like it did to me, the year definitely created some wear and tear on her. To escape the mania which is our house, plus help us with the massive medical bills we face, Susan has gone back to work part-time.  It has been the perfect situation, as she is working for a friend and former co-worker who Susan has a lot of respect for.  So, from Monday through Wednesday, she spends her days almost diaper-free!

Sorry this year’s model of Xmas letter isn’t more shiny and happy.  Actually, I’m feeling more optimistic about the future, which is a weird place for me to be in.  If good times are ahead, I don’t know what I will write about, so here’s hoping next year’s letter from us is a short one.

Merry Christmas and, as Maddie would say, “Ho-ho-ho!” I think this is the same phrase Elin Woods says when she watches TMZ.

Added bonus: A video music collage from the past year.

Maddie at 5, with her new to the world siblings.

(This is part of the continuing series on how life is when you add twins to a child with a developmental disability.)

BE CAREFUL WHAT YOU WISH FOR

I always figured I would have one child, with two being the absolute most I could contemplate. For those of you that are unaware, Susan and I had a hard time conceiving a child, as after 5 years and a lot of frustration, we turned to IVF. This is how Madeline was born. Several years later and wanting another child, IVF** became our option again and, considering our ages (we are very old) and certain other factors, we put back three embryos to increase our not so great odds. We did this, despite me always been consistent in my desire not to have twins, as I shuttered at the idea of how much work they would be. You know how sometimes you are dead-wrong about something you were sure about? Well, having twins was not one of those times. It is exhausting. (cue violin) Add to this the immense challenges of a child with special needs and it’s surprising that Susan and I haven’t killed each other. I think what has saved us is we are too worn-out to muster a fight. Our current plight would have sent many couples to divorce court, but we are very logical people. Who would want to get into a relationship with us at this point, anyway? Are you feeling the holiday cheer, yet?
**We realize that the Vatican has condemned IVF, so hopefully you won’t look at us and our children as social lepers. Hey, wasn’t Jesus born in a non-traditional way? Well, I don’t wear a pointy hat, so what do I know.

OK, I’ve got that part of the story out of the way, let me discuss Sam and Mallory. Sam was born vaginally, Mallory was born about 30 minutes later, via C-section. Yes, the double whammy. We must have unknowingly signed a pact refusing to do anything easy when it comes to having children.

I refer to our twins as being like the 2008 New York Yankees. Great individually, but as a team, not working so well together. Sam is built like a middle linebacker, but has a laid-back demeanor. He does want to be held most of the time…not a good trait in our current straits. Quite frankly, when he was born he was a bit goofy looking, but over the past few months, he has blossomed into a very handsome boy. Look at the picture, we make really great-looking children. Our children make us realize that at one point, we must have been pretty good-looking people. This is at least what we tell ourselves, as we know we are a shell of our former selves. Hey, maybe in a couple of years, after some semblance of regular sleep happens again, we can once again find that healthy glow.

Mallory early on was nicknamed, The Pistol, as she is quite the little fireball. She has no problem announcing her desires, especially when she pulls out her cry that reaches levels that only an in his prime Robert Plant could hit. Her hair is like her personality, as it stands straight up in the air and announces I am here and I’m not going to be ignored. She has a look like she should be fronting an 80’s New Wave Band.

Let’s move on to Madeline. 2008 has been a year where she has made immense strides with her speech and language. We will never be able to fully express our gratitude to her teachers and therapists for what they have done in helping us bring out what we always knew was inside her. The autism spectrum is really hard to explain, but as is often the case, with major advances in one area, other challenges come about. Maddie is in constant motion, as her motor runs at full speed from the moment she wakes up. Combine this with an increase in meltdowns and she can be quite a handful. Considering that babies like to scream and cry and Madeline hates loud noises, it’s not a great mix. She is starting to get used to the idea of them around, though.

Since I’m gone so much with my work, Susan has needed someone to help her, as caring for Maddie is a full-time gig in itself. We are incredibly fortunate to have Samantha and Rachael (Instructional Assistants from Madeline’s school) help us in this regard. (Maddie pronounces their names as Sassy and Kee-Coal.) These 2 young women have become like members of our family and we have the highest respect for them as individuals and as care-providers to our daughter.

At the beginning of the year, I was contacted by the social worker who looked after my father. I was informed that my dad didn’t have long to live. For those of you that have read my book, Dysfunctional Thoughts of a 21st Century Man, I had a very tortured relationship with my father. (Me playing the role of the one being tortured.) My dad had a pretty sad life, as his bipolar outbursts made him really difficult to deal with. Things had regressed to the point where he was bed-ridden much of the past few years with dementia taking over as well. For a reasonably young man, 62 years-old, it was sad to see him reach this point, even considering the psychic trauma he inflicted on his family.

I decided that I should see him one more time, to kind of make some kind of peace. I spent about an hour in his nursing home room trying to talk to him. Between his medication and dementia, it didn’t really seem like much was connecting with him. Before I left, I got up, gave him an awkward hug, and whispered in his ear that I regretted that we hadn’t had a better relationship. He responded to this by saying, in a heartfelt way that, “I’m really glad you came to see me. I love you…Jerry.” Nothing in my life has ever resembled a Hallmark original movie. I can tell you that being called Jerry at this moment was one of the funniest things that I’ve ever experienced. If he knew who he was talking to or not, if he meant what he said or not, I just want to say it was about as good as I could hope for. I spent most of my life not feeling that much except anger for my father, but since having children that I love so much, it has changed that rage into sadness for what I missed.

I have never been good at hiding my feelings about my life. Susan is someone who is much more private in what she wants to reveal, so I thank her for letting me share some of the struggles we go through in these letters. I know that what I write is not exactly what you expect from a Season’s Greeting, but it is the only way I know. Let me wrap things up by mentioning that there are 3 people in this world that fill Susan and me with an immeasurable amount of love and pride. They are Madeline, Mallory, and Sam. We continue to struggle with the difficulties that life can bring us, but their sweet faces can make us forget our troubles almost instantly. As overwhelming as things can seem, I wouldn’t want to live in a world without them.

We wish you a happy holiday season. Scott, Susan, Maddie, Sam, and Mallory.

Maddie at 4.

Every year I send out a Xmas letter to our friends. I thought it might be a good timeline of demonstrating how things can change for a family with a child on the spectrum. I’m starting with Xmas of 2007, where we just had Maddie and we were excited, but apprehensive about our upcoming twin babies. I’m sorry to say but the tone will start getting darker after 2007.

Hi, guess who is back? It’s the Long family! We want to begin by stating that despite how it might appear, we don’t try to seek out unique events to make our annual Xmas letter more exciting. It just seems to happen that way. Well, this year we are set to double your pleasure, double your fun. Susan is pregnant with twins!! If you think that having twins would be exciting, we would agree. If you think that having twins would be overwhelming, we would agree. If you think that you would have no idea what having twins would be like, well, we’re with you on that one as well. The due date is April 10th. We are registered at Pampers.com.

On our side is, we seem to be able to breed beautiful children. I mean, did you get a load of the picture of Madeline we included? You would think she’s the offspring of Bradgelina. (Okay, maybe we are a bit biased.) Adding more beautiful people to this planet is vitally important because otherwise, who will appear on our reality shows? It has been a really good year for Maddie, as she has really made great strides the second half of 2007. While her comprehension has always been good, she is doing a better job of communicating verbally and has started to connect with a few people around her. Things like riding a bike with training wheels, which seemed so far off at the start of the summer, are now something she has accomplished. There are many examples of things like this that she has made great progress in and we can’t thank her teachers and therapists enough for being part of the team effort that has helped her so far along.

Earlier in the year, Madeline was diagnosed with being on the autism spectrum and we would be less than honest if we told you that our hearts and heads weren’t heavy thinking about the difficulties and challenges that lay ahead for her. We weren’t shocked by the diagnosis, but autism has such a heavy connotation to it. Autism is such a hard thing to explain, as it affects each individual differently. Here is the point where we get on our soapbox.

Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. Autism impairs a person’s ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe. (This comes from the autismspeaks.org website.)

One misnomer about people on the autism spectrum is that they are some type of mini-Rain Men types, with savant-like talents. While that does exist, that is far from the norm. Susan and I just feel lucky that we have such a sweet little girl who compels everyone who spends some time with her to fall a little in love. According to her teachers, she is the class clown. Surprising, huh? Over the past few months, she has been consumed with Halloween and Christmas. She has been carrying around a Santa doll and a flyer from Toys R Us featuring a motorized green jeep that she points to. Rumor has it that Santa is well-aware of this wish and that it will be granted on Christmas morning.

2008 looks to be the best year ever for my standup career and I’m in my 5th season writing for the NFL on FOX. My blog (thejuiceblog) has received some acclaim in 2007 and I’m starting a new video project withProTradeTV.com, which will give me another place for my rants on sports. Susan has started working from home with a company owned by a good friend of hers. It has been refreshing for her to work with someone again for whom she has a lot of respect. Most importantly, Susan has had a good pregnancy so far, as the twins have created a healthy appetite for her. Truthfully, my back hurts just looking at her. We wanted one more baby and we got a buy 1 get 1 free deal, so life will definitely become more hectic in April. Keep in mind—if you’ve ever had a dream of spending time with twin babies, we are scheduling weeks after the birth for receiving free nanny services! Remember, sleep is overrated.

Wishing you a healthy and happy New Year,

Scott, Susan, and Madeline

Very few things are typical with Maddie, but she’s been like most kids when it comes to Santa. She was apprehensive when she was very young, but since the age of 4 she’s been money.

For many parents of children with developmental disabilities, a major dream is to have their child hold a job. Where most parents fantasize about their child being a doctor or lawyer, I would be thrilled if my Maddie could work part-time at a grocery store someday, even though I’m filled with anxiety about the cruelty and harassment she would face without me protecting her.

In this ABC episode of What Would You Do?, actors set up a scene where we see what people would do in a situation where one man with down syndrome is bullied and slurred.

The key reason I started this site is the end of the title…Let Me Help You Understand. Most people never get a chance to get a true reflection of the life of someone with a disability. Thank you for checking in here. Hopefully from falling a little in love with Maddie, you have learned that people with developmental disabilities are just as deserving of respect (if not more), as those of us that don’t face similar challenges.

I try very hard not to judge people too harshly who are uneducated about people with developmental disabilities. What I can do is try to inform and educate people. I hope you will join me in this journey.