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?
