Why I began Writing this Blog

Lets start at the beginning, when I was pregnant with Miss Sunshine, the company I was working for closed its doors and everyone in the company was let go. I was secretly relieved because I missed the baby time with my older daughter and I really wanted to be a stay at home mom. Reluctantly, my husband agreed. I did get some consulting work here and there in my field of marketing but, I could do it from the comfort of home where I could sort of enjoy my pregnancy and enjoy my older daughter a bit.

When Miss Sunshine was born, I didn’t think her any different that any other baby. A bit more rambuncious. She did her active milestones rather quickly actually with rolling over at 2 months instead of three and walking at 9 months. I guess I was to busy chasing her to notice her speech and language milestones so I assumed she was doing them at the right time. You know what happens when you ass-u-me.

In 2004, when Miss Sunshine was 1 1/2, I looked at our fabulously build community center for all the programs they offered. They had a few Mommy and me types and a wonderful playgroup where you paid a nominal fee and they let you play with the community center toys and not your own and you got to socialize with other grown ups over coffee you brought yourself. HOW WONDERFUL!! Getting out of the house!! I already had to drop the older daughter, my Princess off at pre-school, why not?

In the Mommy and Me Tumble time, or what ever it is called, class she didn’t really seem to like it unless I was right there where she could see me. Okay, I can oblige I mean she is only 1 1/2. She loved the playgroup though and it seemed as though she got along wit the other kids so I signed her up again and again till it was time for her to do the class where parents were “encouraged to leave”.

Okay, no this should have been a flashing light that something might not be okay for her but since her two best friends that she made at the playgroup were doing the SAME EXACT THING I thought it was normal. She never wanted to go. She’d cry all the way down the hallway. She’d pitch a fit, have to be carried in and then run around like a chicken with her head cut off the entire hour she was there occasionally sitting down to scribble a picture or with hand over hand doing a craft. Or she’d climb the chairs with the boys.

I felt terrible. I felt it was my parenting. The director of the program told me not to worry she is just very active she would calm down next year in regular preschool. So I had hoped but she didn’t. She got worse.

When Miss Sunshine was 3 1/2 we started a wonderful preschool with a daycare option just in case. When we went to visit it was such a warm and loving environment. I loved the oldness of the buildings, the warmness of the surroundings, and the love you could feel from the director. However I did not get that from Miss Sunshine’s teacher. Of course, she is the one who pointed out to me that I need to get Miss Sunshine tested for something. Murphy has a very funny way of showing himself.

As my Mom would say, being the stubborn mule that I am, I dragged my feet because I did not like the woman. I should not have let my personal feelings get in the way but I got the paperwork in to our local Intermediate Unit in December. They finally got back to me in April and all the do is a Cognitive test which means test to see if she has  brain in there.

We go for this test and of course Miss Sunshine wants absolutely nothing to do with it. The woman (who is now our case manager) gets through about half the test and says okay that’s it. I was like huh? She says well, obviously Miss Sunshine isn’t going to cooperate and from what I have so far she is already passed where we can help her. She need to go to your pediatrician and get a diagnosis of some kind before we’d be able to help you. Then she said, off the record I would say hyperactivity and just in case I am right, here is all the forms you need to fill out once you get the ball rolling once you get that diagnosis.

Here it is May, Miss Sunshine’s teacher has practically done nothing with her all year but the director (whom you remember I loved) has been doing one-on-one stuff with her, thankfully not a waste of year and money and I realize I am not on safe ground anymore.

I call our pediatrician to make an appointment and her first one of this sort is in July since they like to do these at the end of the day. My first taste of a wait but this is minor. In fact, I have been very lucky in the waiting game and I count my blessings every day.

Our pediatrician, who is fabulous btw, some times Miss Sunshine likes her sometimes she doesn’t depends on the visit. We aren’t often there, thankfully. Today was a good day. The Princess and I waited in the hallway while the doctor had a half hour “chat” with Miss Sunshine. Then she asked The Princess to take Miss Sunshine to the waiting room. She told me she definitely sees the ADHD BUT there is something else that she can’t quite put her finger on it. She wants me to see an audiologist, a neurologist and if I can’t get an appointment with one of those a Developmental Pediatrician.

I went straight home and looked all that up to start making appointments. Audiologist was semi-easy. Gave me an appointment but first available was November (remember this is July) Neurologist was impossible. I had my own neurologist appointment that month for my migraines so I asked him to refer me to someone. Luckily he did. She was from a hospital in Delaware but, keeps an office in center city Philadelphia. Perfect!

I called them as soon as I got home. Since most of these sorts of kids went to developments pediatricians, they didn’t understand why I wanted to see the neurologist. After what seemed like a very long conversation and the mention of the word seizures several dozen times, they finally said fine come November 12.

Now came the hard part. The developmental pediatrician. I went to my insurance’s website and looked them up. I saw several at Children’s Hospital of Philadelphia. Me being Mom thought wonderful that is one of the best hospitals in the world for Children that is where I want Miss Sunshine to go!! Boy was I naive.

“I am sorry ma’am we are no longer taking new patients” Uh how about a wait list. ” we don’t even have a wait list for any of the doctors on your list, sorry” click . There went that idea. BTW, that was it for doctors in the Philadelphia area too for insurance. I had to call the insurance company who in turn had my call Cooper Medical Center in Camden New Jersey. It isn’t too far for me to drive so I wasn’t to upset, at the time.

I called, they tell me they will send the paperwork, they have a 13 month wait (WOW) and when I send everything back I will get my appointment. They were quick with the paperwork too and I was quick with getting it back out to them too.

So here it is August and I am waiting for those first appointments to start. The phone rings and it is Cooper Medical Center. I figure it is them tell me they received my paperwork, reviewed it and my appointment is next July or something ridiculous.

“Mrs. Sunshine, we were wondering if you are available on October 6th at 11 AM to meet with out Psychologist?

 I was thinking, wow, that was fast and of course I snapped up the appointment!!!

In the meantime, September rolls around, The Princess started first grade and Miss Sunshine went back to her preschool to a new set of teachers, luckily. Her new lead teacher is one who has a wonderful background in education and she and Miss Sunshine seem to hit it off from the start. Guess who isn’t at the school anymore? Miss Sunshine’s old teacher. Minor victory.

October FINALLY arrives. For me the wait seemed endless but I have meet parents along the way who have actually had to wait that 13 months or even two years so I know I was lucky with Cooper but, I get even luckier later.

I ask my Mom to go with me because she was a teacher for thirty plus years for the School District of Philadelphia and I know myself. I clam up when it comes to important stuff. I also called my sister, who now lives in Florida for her advice. She is a Board certified Behavior Analyst with a specialty specifically with children with Autism.

We signed in and waited in the waiting room for a good 1/2 an hour. I thought they were observing Miss Sunshine. My Mom thought they we just rude. For a child’s doctor’s office, all that was in there was a fish tank, a TV showing cartoons and chairs. There were absolutely no toys. I thought, how odd.

The nurse brought us into an exam room, also very sparse but at least it had some toys. I thankfully brought somethings for Miss Sunshine to play with but, I had not expected us to wait this long.

When the Psychologist finally walked in he introduced himself and threw a gazillion questions at us. I was ready for that. He didn’t really engage Miss Sunshine at all but, he told us he was observing her the entire time. She was off the wall or climbing the walls. I would have been too being cooped up in a small space with nothing to do but listen to grown-ups talk about me for close to two hours.

After that he left for a few minutes and came back with some more surveys for my Mom and me to fill out and some for Miss Sunshine’s teachers to fill out. He also wanted to get a copy of what the audiologist says when we go and what the nerologist does as well. The gives us an explaination of the different kinds of ADHD (there is a seperate page for that) and tells me Miss Sunshine most likely has ADHD impulsive, sensory issues and fine motor skill delay.

I do leave  with something concrete which I am very thankful for, a script for Occupational Therapy. When I get home I call up my pediatricians office and they recommend Theraplay which is terrific for sensory issues.

I call Theraplay, they take all of Miss Sunshine’s information and insurance information and tell me they will call me back when they get clearance. In less than an hour the phone rings. Its them with all the information and a few assesment times for me to choose from. We go in two days. Gosh I love that place!!

That same day my Mom’s best friend calls me and tells me my Mom told her I was looking for an appointment at Child’s Hospital, am I still looking? YES! If so, dial these specific numbers and when they ask you to press these numbers press these other numbers and you should get through. I thanked her over and over again and she just asked me to let her know how it goes.

As soon as I hung up, I called. I kept thinking as I pressed more and more buttons there was no way I was getting through and then, miracle of miracles, I got a live person! I told him my situation and what I needed, an appointment, he asked a ton of questions and then he said, okay, I am sending you out some paperwork to fill out mail it back as soon as possible can you come in November 13th at 11 am? You bet!!!

We had out appointment at CHOP!! I couldn’t wait. We were FINALLY going to get some answers about Little Miss Sunshine. I mean everyone was telling us ADHD but there is something else…..

November 13th finally rolled around and we arrived at our appointment. My Mom went with Miss Sunshine and me. It was with the doctor and a Psychologist. They asked us a ton of questions, again, all the time watching Miss Sunshine and trying to ask her questions too. At one point, the doctor asked it okay to take Miss Sunshine in another room alone and the Psychologist continued to ask us questions. Then they both left  us for what seemed a very long time to confere.

When they both came back in, The doctor did the talk and very matter of fact which I kind of liked that she didn’t dance around the subject. She explained that because of Miss Sunshine’s lack of social skills and eye contact, her language skills and her activity level, etc. the doctor definitely sees PDD-NOS, ADHD-combined, sensor issues and fine motor skill delay. I had to have her explain what PDD-NOS was to me but as soon as she said it was on the Autism spectrum, I went into shock and my Mom had to take over the rest of the appointment. I wasn’t expecting that. ADHD, yes, I knew that.

I know she is my same little girl I arrived with but something just changed in me in that moment.

We scheduled and conducted an ADOS which is another type of autism type scale test and Miss Sunshine showed even further on the spectrum on that with even more language concerns and more social concerns than previously considered.

As of March 2008, She is getting Occupational and speech theraphy, has an itenerant teacher in her pre-school and hopefully getting some behavior theraphy soon too.

To be continued….


One Response to “Why I began Writing this Blog”

  1. Brandy Says:

    Thank you for this blog. I am also a mother of a child that is going through the ADHD/Autism diagnosis process. It is amazing how difficult the process is. My son has an appointment with the psychiatrist next week. We are very fortunate to live near Mayo clinic (our local psych. won’t see children under 6 years old-my son is 5) We too were in denial over our sons attention/hyperactivity issues. After my nephew was diagnosed with pdd-nos, we really couldn’t ignore the issue anymore, not to mention that he was wreaking havoc in kindergarten.
    He is an extremely bright and imaginative boy, I hate filling out all the surveys. I feel as if in being subjective I’m admitting my child is less than perfect.
    Please feel free to get in touch with me via my email. Again, thank you for your blog…in helping me realize I’m not alone…

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