Getting the Heck Out of Dodge

Article first published as Getting the Heck Out of Dodge on Technorati.

Before I found out my son Lucas had Autism I was watching an episode of Parenthood on NBC. The episode focused on how prevalent divorce rates are and how much they increase when a special needs child is involved. Some quick research on the internet flashes numbers at you like your chance for divorce rate goes from 50% chance to 80-90% chance.

In 2010 there was a study done in the United States at the Center for Autism and Related Disorders (CARD) at the Kennedy Krieger Institute “debunking” these statistics. The study shows a more equal divorce rate among families with special needs children and without.
Regardless, keeping a family together is difficult. So what is the solution?  

Finding Time to Keep the Marital Fire Burning

No matter what you call it, Date Night, Respite Care or Getting the Heck Out of Dodge, my advice is that of the Nike Slogan Just Do It!

My husband Jordan and I constantly struggle with asking for help from people for a night out for the two of us. In fact over the past few years most of our dates have been with other people. Mine is typically with my girlfriends going to cooking club or book club while Jordan’s typical night out used to be playing World of War Craft in our living room once a week on his computer with his friends.

While this is a great mental break it does nothing to re-energize the marital batteries. So, recently when my parents offered to have our family over for dinner I decided to take a chance and ask if they would take the boys for dinner while Jordan and I did something else. I hate asking because during the week I need so many “favors.” I request help going to doctors appointments when the kids are sick, deliveries of groceries from Trader Joes or Costco because I just don’t have the time, or someone to watch one child while I take the other to some random appointment of the day.

Surprisingly, my Mom’s response was, “I was thinking I should do that.”  Even more surprising, Jordan was harder to convince to go on a date! He was looking forward to my Mom’s cooking. Not that I can’t cook, but let’s be honest, most of my meals these days consist of semi-homemade or a quick trip for takeout. I’m too tired to make the meals I did BK (before kids).

Once Jordan was onboard with a date night with me, we bickered about what to do that would be fun, wouldn’t cost a lot of money, and we could do within our time frame. Finally Jordan remembered that an old co-worker of his told him about “the best buffet in town.” We decided to try it!

Ok I say buffet, but it was more than that – we were going to a Casino for a FREE lobster dinner. We drove about 20 miles into the middle of nowhere using my iPhone as a GPS system – if we lost our satellite signal we were lost. We arrived at the Casino extremely excited for our Saturday night adventure. Our excitement was almost immediately dashed upon arrival.

We were told in order to receive the free lobster buffet you had to sign up for the Players Club (also free). As we hurriedly jumped in line to sign up, there was a man standing at the end of the line who quickly told us that the buffet was sold out, but we could still sign up, be assured the buffet on our next visit and take a coupon as a consolation. On the coupon were 3 choices, $20 credit at either 2 of their restaurants or $20 credit towards slot play. We were in the middle of nowhere in a Casino, all we could do was accept our fate, but weren’t going to let it ruin our evening.

We signed up for our cards, choosing $20 of credit in one of the restaurants for Jordan and $20 of slot play for me figuring the best of both worlds – the man behind the desk said no one had ever done that before! Seriously! Then, being the people we are and not taking NO for an answer we went straight back to the buffet restaurant. Jordan sought out the manager and pleaded with her, explaining that this was the sole reason we drove all the way out to the casino and could she please help us. After all, he couldn’t disappoint his hardworking, loving wife of twin 3 year old boys! (Imagine sad eyes here)

Next thing we knew, we were being seated ahead of everyone else who had been there since 1 in the afternoon. It was about 8:00pm and we took our time gorging (I wish that were an understatement) on lobster, shellfish, sushi, steak and anything else that looked appetizing. After we were completely stuffed and blown away by the incredible desserts – so amazing we called over the chef to tell him, we headed out to the casino.

With an hour left and $20 of credit to spend we sat down and played our hand at the slot machines. The first couple of machines were a bust, but then we found video poker! LOVED IT!!! I had to be pried away from the machine. My last couple of rolls I kept screaming, “This is so fun! We have to leave. But this is so fun!” After cashing out, yes I said cashing out we jumped back into the car and drove home to a nice quiet house.

So not only did I get my fun night out with my husband, but basically I got paid to do it! Well ok, we had a free lobster dinner, came home with a few extra dollars in our pocket and a priceless amount of fun. Also, I think the next time we contemplate date night, I don’t think the question from Jordan will be, “What is your Mom going to make for dinner,” but “What sounds fun?”

Navigating Through the School Disctrict Part II

Article first published as Navigating Through the School District on Technorati.

How Do You know What the Best Choice Is?

Nothing about parenthood has been as easy as I thought it would be from conception, to birth and now to school choices. Lucas and Riley are currently enrolled in a private preschool two days a week for 4 hours a day. Now that they are turning 3, we are looking at moving into the school district and out of the home therapy sessions through our local regional center.

Sounds easy enough – not so… When a child has been working with the Early Start program like through our regional center it is free until they are 3 and then all services end. You are then turned over to your local school district. The school district tests your child in a variety of areas including, but not limited to:

·        Speech and Language

·        Education

·        Adaptive Physical Education

·        Psychology – testing for Autism, Aspergers, PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified)

·       Occupational Therapy – testing for sensory type needs, eating problems, or fine motor skills

All of these tests are done to help create a full picture of your child. Once these are completed the parents and the school district meet for what is called an IEP (Individualized Education Planning) meeting. It is two hours. Our IEP meetings for Lucas and Riley are next week so information is based upon what we have been told by the school district. The meeting is two hours per child. The first hour goes over the results from the testing. The second hour is directed towards coming up with a plan for that child for the following year.

So Here is Where it Gets Tricky

We only have one child with Autism. There is a large chance that only one of our two children will be eligible for continued services after the age of 3.  Or, they both may be eligible, but Lucas may be place into a classroom environment and Riley just has one or two services.

So the questions I ask myself and others daily (or multiple times a day):

• Do I separate the twins for school?
• Do I try to keep Lucas in a private school part time and overlap classes with Riley at their current school? Maybe Lucas can get the benefits of both schools.
• Will placing my children in the school district program hinder them more than help them in the future? Lucas is high functioning and is already succeeding in a regular classroom setting with some help.

What are My Options?

The truth is, we don’t really know what all of our options are because we don’t know how our kids tested, I can only guess. But, then again 3 months ago I thought both of my kids were going to test out of the system and there wouldn’t be any “options” for us. Now we have more questions and choices due to Lucas’ Autism diagnosis.

Based on what I know about how my kids have tested – which isn’t much - and just knowing their abilities this is how I foresee it breaking down:

• Lucas in a classroom with the school district full/part time
• If with the District part time, remains in his current school the remainder of the time
• Or Lucas remains at current school without going into the district and we look into classroom aides – I have heard this can be expensive
• Riley remains at current school and has some sessions at the school district but is not put into a class room
• Or, Riley tests out of the program
• The only way for Riley to be placed in a classroom setting  at the school district without a diagnosis at the age of 3 is for him to need at least 3 areas of help such as Speech and Language, Adaptive PE, and Occupational Therapy
• At the age of 4 Riley would be eligible as a Peer Role Model in a classroom within the school district with Lucas as long as Riley had no current problems, needed no further therapies and passed the districts tests

So the Question Remains

How do we know what is best for our children? At this point mine are so young, and as we move forwardwith the school district I still can’t help but wonder if that is the right place for Lucas and Riley part time or full time. Will they be ok if I separate them at such a young age? I want, like any parent wants, to give them the best education possible!

What Would or Have You Done?

Pros /Cons to Placing a Child in the School District?

Taking it Day By Day - Creating Balance

You see on TV and movies the parents that can do it all, they balance work, life and their families, and they make it look so easy. Since the day Lucas and Riley were born I have found having kids is not what I ever thought it was going to be like. Having one healthy child is supposed to be hard enough, but to add multiples to the mix makes it that much more difficult. People ask me all the time how I do it, my response is simple – I don’t know the difference. Maybe that is the same for how I see my family and Autism.

I am “new” to what Autism is but not new to dealing with it daily. That is just it; I take it day by day. Today’s challenge – How do I create a balance so Riley doesn’t feel left out? I don’t have just one child who I can focus all of my energy on. In fact I have 3 people who need to feel loved and not forgotten everyday – Lucas, Riley, Jordan, oh and you can’t forget Chewbacca, so make it 4.

The Wake Up Call

Ever since Lucas was diagnosed with Autism I have gone through a number of emotions starting with feeling emotionally paralyzed, depressed and then trying to find out the best way to help Lucas by researching online and talking to friends and the boys’ therapists. Today during Lucas’ 4^th ABA therapy session I watched as he received 2 hours of personalized attention while Riley ran back and forth between the kitchen and the family room asking me to play, participating in some of Lucas’ activities and on his own.

All of my focus for the past couple of months has been on the fact that Lucas has Autism – now what? Or I keep fixating on the advice from numerous friends

• I am their best advocate
• Don’t let them get separated

Well here we are in my house and they could not be more together yet separate. I was worried about the possibility of two different schools in the fall. I should be thinking about the attention Riley isn’t getting and needs. Lucas just added 54 hours a month of therapy – they typically do it together even if a therapist is there for one but not the other. ABA therapy doesn’t seem to be working out the same way. Riley can join in if he wants, but it is not the therapist’s job to teach him to sit down and participate when he doesn’t want to.

My First Attempt to Create Balance

Lucas’ ABA therapy was in the morning, so when the boys got up from their nap it was time for Riley’s Educational Therapy. They used to do this together, but since the diagnosis Lucas no longer receives this therapy, so I decided to split the boys up - Lucas downstairs with me and Riley upstairs with his therapist. At first I thought the idea bombed! Riley was crying and wouldn’t work. So I sent him and the therapist back downstairs to be with Lucas; Riley said he didn’t want to be separated.

After 15 minutes of play/work I took Riley back upstairs for a diaper change. When we were done Riley sat down on the floor and refused to go downstairs again. He also said he didn’t want to play with the therapist – we were at a standoff with 45 minutes to go. Back downstairs I went and upstairs the therapist went armed with cars – something Riley can’t resist. It worked! They were playing together again in no time. I quietly slipped upstairs and rested the therapist’s toys outside the bedroom door so Riley didn’t see me and they could continue their one-on-one session.

Taking Tips From the Husband

Jordan has always made a concerted effort to spend equal time with the boys. I never felt the need to – I am with them every day from when they wake up until they go to bed, except while they are at school. Jordan comes home in the evenings and wants time with his kids. Lucas is such a Daddy’s boy and has a vibrant personality and Riley a Mommy’s boy that Jordan typically asks for specific time with Riley so they get their time together. This could be something as simple as asking to carry Riley up to bed for a nap instead of Lucas or sitting on the floor to play cars with just him.

The other day I asked Riley into their tent in the family room to play cars with me while Lucas did something else. I guess part of me was already feeling like he need this attention, but I don’t think I would have thought to do if it weren’t for my husband’s example. And tonight during our bedtime play ritual I found myself sending a lot of praise towards Riley as he sat on the floor and read Monster Trucks out loud. Jordan and Lucas were next to us playing. Lucas would go out of the room and spin for a bit, talk to Jordan and come get his hugs from me when he needed them. However, tonight my mind was on what Riley needed.            

What About Jordan? What About Me?

I know Jordan needs me and I try to be there for him. Since we were married we were told we should have a date night. We used to have theater tickets and that was like our date night. We gave those up while I was pregnant and we couldn’t go to the theater any more. Too much bed rest for me. Now, I try to make a nice dinner for him at least once a week (sometimes that is stretching it) that we can share after the kids go to bed or make him a cup of coffee in the morning so he knows I am thinking about him.

As for me I have a cooking club and book club that I am involved in. Those have been amazing outlets for me to get out of the house and do something that isn’t kid or family related. My girlfriends have also been amazingly supportive of me since I shared my story with them about Lucas’ recent diagnosis.

Continuing the Balance

This is the part that makes me the most nervous. I saw one problem today and found a way to do something about it. Who knows what tomorrow will bring in the balancing act and that is why I just have to keep taking it one day at a time!

Sample Schedule in Our Balancing Act

	Sun	Mon	Tues	Wed	Thurs	Fri	Sat
8 am	Wake Up, Get Dressed, Have Breakfast
9 am			School		School
10 am	ABA			OT		PT
11 am		ABA		ABA		ABA	Class
12 pm
1 pm	Nap		Nap	Nap
2 pm		Nap				Nap
3 pm
4 pm		Speech	ABA
5 pm				Edu.
6 pm	Dinner
7 pm
8 pm	Bed Time

ABA - Applied Behavior Analysis Therapy
Edu. - Educational Therapy
OT - Occupational Therapy
PT - Physical Therapy

How Do You Keep Balance in Your Life?
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