Psychological Evaluation

March 13, 2008

We FINALLY got Miss Sunshine’s evaluation from Indian Creek. This is from yet another Psycologist I really did not like. He kept telling me if Miss Sunshine takes off her clothes, the interview is over. Well, that is her “thing” and it was all about him. Self important Schmuck.

At any-rate, he too diagnosed Miss Sunshine after seeing her for less than an hour?!? (excuse me?) I guess he had the woman who came to observe her at home and at her school’s notes and the diagnosis from her doctor but still he added to it. HE diagnosed her with PDD-NOS, ADHD combined, and Oppositional Defiant Disorder. I had no idea what the last one was and had to look it up because no one bothered to contact me to tell me he added it and explain it to me. They just mailed it in a report!

I did have a meeting yesterday with the Indian Creek people and Miss Sunshine’s teacher and director of her pre-school to go over the report, finally, and discuss what they were recommending and that we need to find a provider since they do not cover my area. Her teacher is practically begging for any assistance at this point because she really wants Miss Sunshine to be in a regular kindergarten in the fall with a shadow of some kind but right now she isn’t sure how that would happen. I would love for that too.

We have a little over 5 months and counting…..

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Trying to Get an Occupational Therapist

March 11, 2008

Miss Sunshine’s IEP began a month ago but does she have everything in place? NO! I call the IU almost every day to ask when are they getting her the Sensory OT in her school but they keep telling me they can’t find one. FINALLY, I got a call from the supervisor telling me that they are starting a new contract in July and perhaps that company can help me. Only problem is they don’t have someone to go to the school plus it is the place Miss Sunshine ALREADY goes for therapy that my insurance pays for twice a week.

Her head OT there tells me she would prefer someone in the school because that is where most of Miss Sunshine’s problems occur and we are trying to get her ready for pushed in kindergarten. AHHHH. We have roughly 5 months left of services from the IU to make a difference here and with each day you can tell it is going to make a difference.

IEP

February 6, 2008

I can’t believe it, I signed off on Miss Sunshine’s very first IEP yesterday. The entire process only took us an entire year. Whew! I would call us lucky and me a very pushy Mom.

Oh and lucky to have so many people who love us who are also in the field like a Mom who is a retired teacher with 30+ plus years teaching in the Philadelphia school district with connections to school psychologists for me to speak to about Miss Sunshine. And my “Aunt” (my Mom’s best friend in the whole wide world) who connected me with CHOP and a Developmental Pediatrician which without I would STILL be waiting for a diagnosis. THANK YOU SO MUCH!!! My sister who is a Board Certified Behavior Analyst who always wondered why she decided to go into this field besides the fact that she loves the work she does and NOW she knows the reason 100% certain.

Miss Sunshine is going to get the therapies she needs at home and at school now to put her on a good path. We have till September before she starts Kindergarten and I so want her in a regular classroom. I think, now, she can do it!!

Aggravation with Therapy

January 30, 2008

Noticed how I said “Aggravation with Therapy” not Aggravation AT Therapy”.

Took Miss Sunshine to her usual place for her twice weekly therapy today. Lately when we go there have been tons of people and kids in the waiting room. Good for the place, bad for Miss Sunshine. It sets her off for some reason. She runs back and forth the length of the waiting room, she walks on all the chairs, pushes objects off the chairs, she takes pamphlets out of the brochure holders, drops cards on the floor, kicks the magazine stands, she touching everything and everyone, invades everyone’s personal space and on rare occasion pushes people out of her way.

The therapists who work there are very used to this from her and several other kids there. I mean come one, she has an Autism Spectrum Disorder as do many others that go there. That is way she is there for Jimmie’s Sake!

Well, first, after some of her usual running and dropping things, she threw a Mom’s bag on the floor and the woman literally got angry with her, gave me the nastiest look ever and told Miss Sunshine like 5 times to say she was sorry which she FINALLY did. I said she was very lucky miss Sunshine said anything and the woman shot me another very nasty look and said something to her therapist but, I didn’t hear it. I figured I would just say something to our therapist when it was our turn because it seemed a tad inappropriate for a place like this for someone to get angry over Miss Sunshine’s behavior. However the best was yet to come.

Miss Sunshine went and grabbed all the brochures again, the waiting room got terribly over crowded and I grabbed the brochures before she threw them. As I turned around, I saw Miss Sunshine just passed a very small boy and his father yelling ” What the hell is wrong with that girl!!!” I picked her up, ran inside the main room and told them if it wasn’t our turn now we were leaving as tears streamed down my face. One incident I could take but not two in one day.

I should have said something like she has Autism and AD/HD what is wrong with your kid that it is here for therapy? but I missed my opportunity. How dare he!! Every single child in that place was in there for some type of therapy! They all have something that needs to be worked on. Mine just had a tad more than most waiting in that room at that moment. I would have NEVER EVER IN A MILLION YEARS EVER said anything like that even in a place that was not supposed to be therapeutic. How DARE HE or any other parent give dirty looks, frown at another parent or actually say something. So disrespectful. So hurtful.

The Guilt Factor

January 14, 2008

Great Article for today:

The Guilt Factor

When a child is diagnosed with autism, parents develop a new vocabulary. Conversations contain words like ABA, receptive and expressive language, discrete trial training, eye contact, floor time and biomedical approaches. Parents share their joys, their fears, their strategies and their dreams. In fact, almost everything is easily discussed except one thing – THE GUILT FACTOR.

While it’s proven time and again that parents are NOT responsible for their child’s autism, many parents have this nagging little feeling somewhere deep inside that they are to blame. If they don’t feel they caused the autism, they typically feel that their child would be doing better and progressing faster if they just put more e ffort into it.

One can only equate it to preparing for the Bar exam. No matter how much you study, you could always do a little more. Simple every day activities result in great emotional stress for an autism spectrum parent. It’s not long before the “guilt factor” spills over into every area of life.

HOW THE GUILT FACTOR IMPEDES YOUR LIFE

Your autism spectrum child is interested in animals. In a completely “non-typical” method of conversation, your child names all the farm animals and wants you to repeat it back to him. Again and again and again! You do so and the guilt factor sets in. “This is so inappropriate” you think to yourself. “I should take this opportunity to teach my child how to converse appropriately” But you know that if you don’t comply to your child’s wishes he’ll have a meltdown, and you’re busying making dinner, your two year old is crying because she’s hungry and your eldest needs help with her homework questions
Disheartened, you continue the banter with your child, blaming yourself for not
doing a better job.

The telephone rings and it’s your friend. You’re thoroughly enjoying the conversation but just then you notice your child repeatedly spinning the wheels on a toy truck while making a strange noise. “I shouldn’t be talking to my friend. I should be teaching my child how to play with that toy” you silently berate yourself. Then your child begins to run up and down the hall and you silently reprimand yourself. “I must get off this phone. Time is precious and I should be engaging my child”. Feeling discouraged, you’re torn between hanging up on your friend and redirecting your child.

When picking up your child from OT, you chat politely to the other parents. One mother mentions that her daughter has extra speech therapy. Another one talks about the social skills group she enrolled her son in. Another one declares that she just signed her child up for Karate with an aide to help him. Despair and guilt wash over you. “These parents do so much” you think to yourself. “How do they do it? Where do they find the time? I should do more. Perhaps I should have signed my child up for Karate instead of swimming.” As the guilt factor sets in, you shamefully accuse yourself of being a bad parent.

It’s been a long day and you’re exhausted. You’ve been to work, dealt with tantrums, spoken to three teachers, rearranged your child’s therapy schedule, cooked dinner, bathed your children, cleaned up and prompted your child through simple activities. As you plop on the couch to watch some TV, that feeling of guilt washes over you. “I shouldn’t be relaxing.” You say to yourself. “I should be re-writing my child’s program. I should be researching new methods of treatment. I should be going over my child’s IEP.” But your brain can’t take one more thought about autism and you guiltily sink into the couch and think “Tomorrow, I’ll tackle it tomorrow”.

KEEP IT IN PERSPECTIVE

Paradoxically, parents of autism spectrum kids are one of the most proactive groups that exist. While they commonly feel they’re not doing enough, these parents should be honored and commended. They’re able to cope with more in a day, a month and a year than most can conceive of coping with in a lifetime. Their resilience, creativity and persistence help their children progress and reach potential that nobody thought possible. The great strides that have been made in the autism community are largely due to parent driven establishment. The next time the guilt factor sets in, keep it in perspective and remember the following points.

1. You’re not alone

You are a great parent. You are your child’s best advocate. You have a lot on your plate. Your days are often filled with a great deal of mental anguish and emotional stress. You help your child through small activities that most parents don’t even think about. You fight for services for your child. You fight for the best class placement. It can be tiring. It can be exhausting. As you look around, you often feel that other parents are doing a better job. Realize they think the same of you. The guilt factor impedes their life too.
Parents of autism spectrum kids have a common bond. They understand, they mpathize and they spur each other on. If you declare “My 6 year old dressed independently today” they rejoice with you, because they too appreciate every milestone, large or small.

2. Organizations

Parents of children with autism have been the catalyst of some of the largest and most successful establishments for helping those on the spectrum. This is on a worldwide basis. A large number of autism schools have been driven by parents. Special education distributors and manufacturers often have parents at the helm. Researchers and educators are often parents. Increased services in schools and communities are the result of parent driven efforts. Non profit establishments have teams of dedicated parents who are committed to helping those on the spectrum. You might not be part of one of these establishments but you have made a difference. It’s the combined unity of parents and a strong voice when advocating for your child that calls these organizations into being.

3. Relationships

When your child is born you are instantly a parent. The role of a parent is to love, educate and support your child. You provide your child with values, teach right from wrong, build their self esteem and guide them to become happy, independent adults. When you have a child with autism, you become a teacher. The role of a teacher is to educate a child. Whether it’s a small task or a large task, teachers use e very opportunity to educate a child. As a parent of a child on the spectrum it’s difficult to maintain a balance. While you want your child to learn as much as possible, you also simply want to be a parent. The next time the guilt factor sets in because you’re not teaching your child at every moment, release it immediately. Your child loves it when you’re just being a Mom or just being a Dad. While it’s perfectly fine to teach some of the time, a healthy balance leads to a healthy relationship between you and your child. Enjoy those moments with your child. Even if they aren’t typical interactions, they’re certainly fun!

4. Acceptance

On asking adults with autism “What’s the single piece of advice you would give to parents of autism spectrum kids?” the answer is almost always a unanimous Unconditional love and acceptance.” For just a moment, view your child’s perspective. Almost every action gets corrected. Almost every behavior is modified. Method of play is considered inappropriate. Self stimulatory behavior is often halted. Your child is constantly being told to think, talk and act in a way that is foreign to his inner nature. It can’t be easy to keep one’s self esteem intact. I certainly advocate teaching as many kills as possible to help your child function in life. However, it’s essential your child knows you believe he is perfect just the way he is. It’s simply unfortunate that others might have ifficulty understanding him. Your child should intrinsically know the reason he’s learning new skills and altering his behavior is not because you want to change him, but because it will help others relate to him, grant him acceptance and allow him to lead a more productive life.

The next time you feel guilty about not correcting your child’s behavior or mannerisms, remember that delighting in your child’s unique qualities is just as impo rtant as teaching appropriate actions. The next time the Guilt Factor impedes your life, simply acknowledge its presence. You don’t feel guilty because you’re a bad parent. You feel guilty because you’re an outstanding parent. You’re a parent who loves your child dearly. You’re a parent who is so committed to helping your child learn that you feel bad taking time for yourself. Your hard work, dedication, energy and eternal giving are unbeknown to most and recognized by few. I acknowledge you and say “Well done! I now how committed you are and what it takes. You are an exceptional parent and I recognize your greatness!

– By Jene Aviram This article is property of and copyright © 2003-2007 Jene Aviram of Natural Learning Concepts. Reference of this article may only be included in your ocumentation provided that reference is made to the owner – Jene Aviram and a reference to this site http://www.nlconcepts.com

Referrals

January 13, 2008

Miss Sunshine now qualifies for medical assistance because of her diagnosis which is a great help. The medical assistance usually will pick up the co-pay if the doctor or therapy we go to is accepted by them, IE takes their insurance. We chose one that usually is accepted most places and as of January 1st, Miss Sunshine’s Occupational Therapy place accepts it, HOORAY!

However, we have to get referrals. I have never done this before. Not a problem the manager of the OT place says, she will help me the best she can. She is a doll. She gives me all the information I need and then some an ENTIRE week before Miss Sunshine’s next appointment. Plenty of time for Miss Sunshine Primary Care doctor’s office to get a referral written.

I call there the same say. It is a referral line I leave the new insurance information, the OT’s information, Miss Sunshine’s information and, of course, my phone number. It says if the have questions they will call. I don’t hear from them but I get nervous and rightfully so. The day before Miss Sunshine’s appointment, I get a message from the OT office manager that they received another prescription for OT and didn’t need that but, they need a referral and now there isn’t enough time to get one for a pre-approval before Miss Sunshine’s appointment. Terrific.

Thew next day I can the pediatrician and insist on speaking with the referral person. She tells me that our primary insurance doesn’t need referrals I tell her I know, I had left all the information for the new insurance and give her the new number. We hang up. She calls again, for Miss Sunshine’s birth date etc. which she could have looked up. We hang up. She calls me back and say but your OT place doesn’t accept this new insurance. I tell her I told her on the message that they do now and give her the information again. We hang up. The phone rings again but, thankfully this time it was my dad. I think I would have screamed if it was her again.

Of course we ha to pay the co-payment that afternoon. My husband said we should present this woman at the pediatrician’s office with a bill but at least we will now be covered for this weeks’ appointments.

Cannot wait till the next fun filled moment.

First School District Contact

January 8, 2008

I happened to be in a meeting yesterday with the school district psychologist for a different reason (the Princess is in the process of being test for mentally gifted) and after the meeting I pulled her aside and mentioned the Miss Sunshine’s diagnosis.

The SD psychologist was very happy I confided in her and told me about an early intervention meeting that was coming up at the end of January. She told me she definitely wanted to be involved in Miss Sunshine’s intake into the school district and she would get back to me about the early intervention meeting.

The SD psychologist actually called me back today!! I was kind of surprised because I am not used to this kind of turn around from this type of professional. She gave me the name of the person to contact at the Intermediate Unit to get an invitation to the school district meeting and to get further details. It looks very promising sine Miss Sunshine is supposed to start kindergarten in the fall.

Welcome

December 30, 2007

Welcome to our new Adventure!! 2007 sure was a bumpy ride with all of our discoveries of Miss Sunshine being on the Autism spectrum and also having AD/HD.

We wanted to find a way to keep a journal of journey and to keep our family and friends informed at the same time so we began this blog. We hope this helps.

Since this a public journal, please understand there will be no use of Miss Sunshine’s real name nor the use of her big sister’s name either (hereby being called The Princess). I will not use any child’s real name in a public forum. I will also not be posting any pictures publicly.

I am currently writing a background of 2007, all of our ups and downs leading up to diagnosis that will placed as a second page. When that is complete I will let you know. It is probably going to be pretty long so you’ll want to grab your favorite drink and a snack before you read it.

You just bought your “E” ticket now we hope you enjoy the ride.