Welcome to My New Blog

Welcome to my blog about my journey with autism and twins. So far my family is just at the begining of our travels but I hope you will join me as I write about them. A special thank you to all of our family, friends, therapists and teachers for all of your love and support.

Saturday, March 19, 2011

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?”

Thursday, March 17, 2011

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?

Thursday, March 10, 2011

Navigating Through the School District

You are their best advocate....

This is the primary advice friends and family have given me since the day Lucas was diagnosed with Autism. So the questions I keep asking myself since I only have a few weeks left before their IEP meeting are - How do I advocate for Lucas and Riley? What do I need to know? How do I make sure they get the best services they need from the school district?

Do you feel my internal panic rising? It does every time I start to think about all of this at once. The only way to deal with it I have found is to talk to as many people as possible. My first blog opened the flood gates of information from family, friends, friends of friends and people who can relate to my story. I have yet to speak to everyone who has reached out, but I feel like the more I hear and learn the more mentally prepared I am. Not to mention the more questions I have. There is a lot to do, it truly is mind boggling and I don’t think I have scratched the surface of what is yet to come.

Advice Given to Me
  • Keep a large notebook with everything in it. This includes notes from meetings with the school district, business cards from everyone testing/meeting the kids and information on the therapies they have already received. I have started to update a notebook I previously had from their therapists, including separating the notes from the therapists by category then date. After each session the boys have had with their therapists they leave a carbon copy of their notes from their session which goes into the notebook. This will help me create a detailed chorological list of information on the boys and their overall developmental process. I have also created separate binders for the boys, previously they were crammed into one overflowing binder, with some notes still scattered around the house. 
  • Utilize the Family Resource Center or Library – The centers have been created for the kids and the parents to help obtain as much information as necessary to be a good advocate for your children. Today I went to the resource center and the woman I met with was a wealth of knowledge and comfort. She allowed me to share my story and help point me in the direction that I needed. There was a library of books to borrow from, information on doctors, care givers, and support groups. If they didn’t have it they knew where to get it. As I left I wondered why it took me so long to go there – I have been given a brochure about the resource center before. My kids have been in the system for so long, but I never really thought any of this applied to me, but now I know it all applies to me and my family. I am sure I will be going back in the near future, they were so welcoming.
  • Find New Doctors – With the autism diagnosis Lucas will now need doctors who specialize in this area or kids with special needs. Two specific types of doctors to look into:
    • Pediatric Neuropsychologist – My understanding is that they assess children like Lucas suspected of having developmental disabilities to better diagnose them in a more comprehensive manner and work with parents to create a treatment plan with other appropriate specialists, i.e. Developmental Pediatrician, Occupational Therapist,  and Speech and Language Pathologist. For more information I recently found the AAPN (American Academy of Pediatric Neuropsychology) website. From there you can find out more information and search for a doctor in your area.
    • Developmental Pediatrician – This type of pediatrician is supposed to be able to help a child with special needs including autism more than their current pediatrician. My understanding is that they have different kind of training than their current Pediatrician. I have yet to discuss this with their current doctor. Sites I have found helpful are Healthy Children and the American Academy of Pediatrics.
  • Join as Many Organizations and Online Support Groups as You Can – Friends and family may know a lot of information, but with the internet at our finger tips we can connect even faster than ever before. That is one of the reasons I started my blog. I wanted to be able to not just share my story but be able to learn from others. I plan to take this advice and use it as much as possible. By joining organizations I mean, you don’t just have to join monetarily, my friends suggested look at social networking site such as Facebook and Twitter and join discussions. There are so many people out there going through what we have been through, their advice is immeasurable.
  • Research Studies - Look into local research studies at Universities. This may help not only teach the kids but also give additional therapy needed without the cost.
6 Degrees of Separation
Before Lucas’ diagnosis the closest I got to Autism was watching Parenthood on NBC. I didn’t know what it was or anyone who had it… or so I thought. After my first post I mentioned the floodgates opened. Now I can say almost everyone I know has already been touched by Autism, we just never had a reason to talk about it. One of our closest family friends has a brother who had Autism and was used in some of the earliest studies done. My neighbor across the street, I always knew she was a teacher, I never realized it was for kids with developmental disabilities. I have family members who are either working in the field of autism or their children have diagnosis of developmental disabilities, again we just never talked about it.

You may think based on that I am not close with my family. It is just the opposite. In fact I live within a 10 mile radius of all of my local family. The rest of my family and my husband’s family is connected somehow so we speak with each other as regularly as possible – even if it is just an email of pictures with the kids from the past month. While blogging was my way of reaching out and may not be someone else’s, it just proves the power of talking to those around you. 

Starting the School District Testing
Having my family, friends, and even some new friends behind me I felt much more prepared when we went to the school district for our first day of testing with Lucas last Friday. I had a better sense of what the day would be like – the school speech pathologist would ask Lucas a bunch of questions and he would answer them, much like his visit with the psychologist who diagnosed him with autism.

In general this description of what the visit would be like was correct but there was more to it. The day we went for Lucas’ testing we went as a family, including Riley, Jordan and myself. Originally Riley was to be tested that day as well, but his appointment was changed last minute due to the other speech pathologists’ schedule. The following is a fairly detailed account of what we experienced because I felt so in the dark before I went in for the testing and if I had just gone to Riley’s I would  still be in the dark. I don’t want other parents to feel so lost or have as much anxiety as I did going into this process.

Lucas’ Testing
When we arrived we checked in at the school’s administration building. After a brief wait the pathologist came out and showed all 4 of us through the school courtyard to a class room that is used for adaptive physical education. It looked like a big play room and the boys were so excited!

Riley and Lucas immediately started diving into the ball pit, playing on the circle swing hanging from the ceiling and throwing large balls around the room. Oh and I can’t forget that Riley found toy race cars to play with. After warming up to the room and the pathologist Lucas was shown a small room in the back with a sign next to it that said “Quiet Room.” The room was just large enough for a small table and 2 chairs, one for Lucas and one for the pathologist. Two walls of the room were lined with bins of a variety of toys. Another wall was glass to give it a more open feeling and allow others to look in if they need. Later, as I walked down the corridors searching for the bathroom, I found out that the rest of the school had this same set up with windows instead of walls for each room so you could look in and observe for at least one wall. Architecturally I am sure there are a number of reasons why the school was designed that way; I just know it made the building feel less claustrophobic.

For the testing process Lucas was seated next to the pathologist and the exam began. She opened the first book and began her questions. If you have never seen one of these books, from my experience, they typically have 4 or more pictures on the page and the examiner will ask the child open ended questions that begin with “Which one is…” “Where  is…” Lucas would then answer the question verbally and point to the picture. During the session the pathologist recorded Lucas’ answers on a score sheet – from my vantage point it looked like a scantron score sheet. She also wrote down some responses that Lucas made, maybe ones that were off topic or some were repetitive phrases, for example Lucas would point to a lot of answers and say, “That one is perfect.”

The exam took about 2 hours including minimal breaks – we were told it should take no more than 1 1/2 hours. So far all of Lucas’ testing has taken more than the estimated time. I brought some food for him to snack on to help keep him focused and engaged. Unfortunately, the time and food was not enough to compete with all the toys he was surrounded by. He was over stimulated and in the end the pathologist was not able to complete all of her examination.  We were sent home with a Language Use Information (LUI) worksheet to fill out to help her finish her examination and get a more complete picture of Lucas’ speech and language (verbal and non-verbal) strengths and weaknesses.

During the entire process Jordan and I took turns observing Lucas’ testing and playing with Riley in the other room. Thankfully Riley was his happy self and thought this was a new place with lots of toys and had fun. He sat and had his snack when he was hungry and didn’t make a fuss that most of the attention was on Lucas.

Riley’s Testing – A Different Experience
The day we went for Riley’s testing Lucas was left home for his other therapies. This was on purpose – we wanted to make sure the pathologist saw the real Riley and not the one that is constantly overshadowed by his twin brother.  So it was just the two of us. As with Lucas our day started in the administration building. That is the only thing that was the same that day.

I had told Riley he was meeting a new friend that day (Neither child has been told by me that they are being tested ). When she came out, I introduced them. Riley looked up and gave her a big smile. The pathologist told me she was going to take Riley to start and they would come get me in about 30 minutes. I watched as the door closed behind them and all I could see was my little boy’s hand holding this strange woman’s hand as they crossed the courtyard. Mentally I knew the path, but I felt like I was letting go and he was growing up. I didn’t even feel this kind of separation anxiety on his first day of preschool.

I sat in the front office waiting… busying myself on my cell phone, returning calls, emailing people and watching the clock. 30 minutes went by, then 45, then an hour. At this point I was pacing and trying to tell myself this just means he is doing well, he is focused and when they are ready for me they will come and get me. Sure enough after 1 hour 20 minutes Riley came bounding in through the door with a huge smile on his face and saying, “Mommy, Mommy!”

The pathologist invited me back to the same room where Lucas was tested. While Riley played on the floor next to me, the pathologist asked me to tell her about Riley and tell her of any concerns I had. I didn’t have much to say – I was concerned my mind was going blank and I was not telling her what she needed to know. I requested the LUI speech assessment we were given to do for Lucas at home. She seemed surprised I wanted one, but I figured if I needed to do it for Lucas I needed to do it for both. I tried to ask how he did and she said he did well, he focused and finished the exam, but the scores wouldn’t be given to me until the IEP meeting.  If I had specific questions I could call her before the meeting. After that we were done.

I should note that after we finished our visit with Lucas at the school, Jordan told the psychologist to remove all cars from the room before we got there. It seems not only did they follow Jordan’s advice, but it allowed Riley to have a very successful assessment of what he knew. 

Tests Used
The following are the examination booklets used:
  • PPVT4 by PsychCorp
    Basic measure of receptive language
  • PLS4 by PsychCorpPreschool language scale
Why Was the Testing So Different?
I couldn’t help wondering why the tests were so different besides the obvious facts that I had both kids with me for Lucas’ testing and Lucas has the autism diagnosis, so I sought out advice from their speech therapist. She reassured me that as I probably imagined Riley focused so well on the testing that they didn’t need to come get me. There was no point in interrupting the testing process.  That explanation made sense since there is more testing for Lucas and Riley this Friday (tomorrow) and the pathologist said she was going to make sure that no parents were involved (i.e. sitting in) and that Lucas and Riley were to be separated because they will respond much better that way.

I can’t disagree with that logic. Also, when asked about Riley and our concerns for him, I felt like I went blank and was concerned I wasn’t concentrating on his needs enough and that he was getting the short end of the stick. I want to prevent that in any way possible – had I not prepared myself enough for his evaluation?

The speech therapists response was very positive, she first said I was being too hard on myself – well when am I not - and she also said I probably went blank because I really don’t have many concerns for Riley. He is doing really well. For a child that was saying single words at 17 months and now 4 -6 plus word sentences, and there were no other major concerns to address. The pathologist had enough information to complete her observations and testing, so she didn’t need more than the time she took with us.

Next Steps
Speech is only one piece of the testing process for the school district. We still have the following areas to cover:
  • Adaptive Physical Education
  • Occupational Therapy
  • Education
  • School Psychologist
  • We may also have Hearing & Vision Testing again
These are just the parts that we have to schedule and make sure the boys are available for. They may also do an in classroom observation on top of the reports they receive from the boy’s current therapists.

Getting Ready for the IEP
As it gets closer to the IEP meeting I am working on speaking to as many people as possible to help give me advice, so if you have any, or can point me in the right direction, please feel free to do so. I have so many questions the Preschool Coordinator has decided to come to my house tomorrow to have a meeting with me to try to help answer them.

Tell Me How
You Navigated the School District.
Who Did You Take to The IEP Meeting?

Thursday, March 3, 2011

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’ 4th 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

8 am
Wake Up, Get Dressed, Have Breakfast
9 am



10 am


11 am
12 pm

1 pm

2 pm


3 pm

4 pm


5 pm


6 pm
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?
Please Share . . .