Beware the happy child!

Emily's teacher came over for their regularly scheduled session. I should have known something was wrong when Emily calmly let her teacher sing to her. (Emily cannot stand to hear anyone sing a Capella, but she can tolerate music and radio songs, etc. Just oddness. LOL!) Shortly after her teacher left, she spiked a fever. Due to the fact that Emily has been asleep all day, things have been pretty peaceful in our household!
=oP

Thankfully, Emily already had a well-child checkup scheduled for this afternoon, and she is on antibiotics now. Her throat looks like raw hamburger. She must have had this brewing for a while, but she doesn't seem to register pain until it is at terrible levels. This can be a blessing and a curse. As for the checkup, I don't know what to make of it. When the pedi asked if I had any developmental concerns, I explained Emily's diagnosis, and the subject was dropped. I don't know if that was because she has been to a developmental pedi or if it means this practice doesn't want to be bothered with the developmental stuff.

I think I was spoiled rotten by our pedi back home who actually carved out a block of time to discuss everything from potty training to tantrums to health concerns during a well child checkup. I just want a front-line physician here who will take the time to help me sort all this out and offer regular advice on my kids' development. They get sicker than most kids, so we are in the office a lot, and it would be wonderful if their pedi cared enough to get to know them.

Happy Birthday Emily!

My sweet baby girl is 3 years old today!

She has had a great day. We took her out for her birthday, and she sat with her brother and sister on the other side of the booth--just like a big girl. She even let me sing "Happy Birthday" to her without throwing a fit or kicking me. Now that was a huge step! LOL!

The birthday girl is in her room asleep. When she wakes up, we have a Dora birthday cake for her and a few presents. I'm sad that it will be just us here to celebrate, but considering that Emily doesn't have a clue that is even her birthday or anything that birthdays entail, she won't notice or miss anyone.

It is so easy to let bitterness steal my joy today. But, just looking at her with her hair up in pigtails and a sweet look on her face can make me forget most things. I hope she can hold on to this innocence and never be hurt or disappointed by others.

Dearest Emily, my birthday wish for you is happiness, always. I love you!

I miss my sister already. She and her family just left for home, and I am so sad! She is such a bright part of my life. I love that our husbands and our children love to be together. My only wish is that we could live closer. My dream is to live next-door to them someday. Please Lord, let that happen!

Laura and her counterpart Annie had a high time together. Laura kept calling Annie her "Cousin Friend." There was an...incident...in the bathroom. My sister and I found a towel on the floor in there with some very suspicious and very stinky smears on it. Sis tossed the towel, and after they left, I gave Alex and Laura a lecture about handwashing and using TP and never, ever, ever a towel. I asked who did it, and Laura piped up, "Cousin Friend did it. She had poop on her hand." (stare, blink) My husband and I got a huge laugh out of that as we resanitized the bathroom. Poor Cousin Friend was probably not the culprit, but she was not here to defend herself. LOL!

Alex and the boys spent most of the time torturing the girls and bowling on the Wii. They all started packing up last night, and Alex had a very hard time with that. He climbed in my lap and said, "I don't want anyone in this house to leave." It was all I could do not to cry in agreement. I love that boy!

Emily's favorite part was climbing on her uncle's lap or patting the baby on the head. She was very gentle, which surprised me. One look at Em's baby dolls will tell ya that she is anything but gentle! She had such a good few days. Very few melt-downs. Lots of words. She seems to thrive in a crowd.

Vaccines

I had a terrible dream last night. In it, I was at my doctor's office for a check-up, and he told me that I needed a booster. As he was leaving the room, I told him that I wanted to speak to him about the vaccine before he gave it to me. He came back in the room and started the exam. Then he got the syringe and came at me. I screamed and tried to get away. I was yelling, "Please! I need to talk to you about this first!" He pinned me down and injected me. When he was finished, he said, "Now that wasn't so bad was it?" I had to explain that I was not scared of the injection but that I was concerned about the safety of the vaccine itself. I was so angry and embarrassed, and I felt violated because he wouldn't listen to me.

I know why I dreamed this. First, Emily's 3yr old check-up is on Monday. This is the first pediatrician appointment since her diagnosis, and this is with a new pediatrician. I want to discuss her development, not just her health. Last year, her previous pediatrician did not want to discuss anything related to her developmental delays or speech with anything more than, "Lets wait and see." It was an eerie parallel to Alex's 15mo check-up when I knew something was wrong. That pedi told me that all children develop differently, not to worry, and not to compare Alex to other kids his age. This misinformation cost us precious time, and Alex did not get into early intervention until he was 3. This was shortly after we had moved and changed doctors. Dr. R saw the signs and the immediate need for Alex to be evaluated. I am forever in her debt. So, long story short (too late!) I am sweating Emily's appointment.

Second reason I must have had that dream was that I have been giving much thought to the vaccine issue. I have never bought into the mercury scare, but I have always thought there had to be some connect between autism and vaccines. Even before I read about the settlement case, I thought allergies had to be part of the puzzle. Then I started thinking about Alex and Emily's issues. From a very early age, Alex was different. If his autism was exacerbated by the vaccines, then it must have been from the earliest set of them. Emily, on the other hand, seemed to be developing normally. She spoke early, interacted beautifully, and other than her terrible allergy/gi issues, she was developing normally. When we moved here, I can remember telling my husband that I was so happy that we had a child without developmental delays. (Our middle child, Laura, has significant speech/processing delays that have gotten much better in the last 2 years.) Sometime between then and Emily's 2yr old check-up, we started to lose her. The only significant event in that time (again, other than her continuing GI issues) was the vaccination. Alex establishes the family predisposition, and Emily's normal development followed by abnormal development establishes that there was an event. I'm going to look through Emily's shot records and attempt to get her entire medical records and see what I can find.

Spring Break

This has been a great week. My husband has had the week off, and now my sister and her family are here visiting. We've had Wii tournaments and snowball fights, pizza and homemade pound cake with fresh strawberries and cream. Sheer heaven on all counts! Alex adores his two older boy cousins. I love having my sister here. They got in late last night, and we stayed up talking until 4:30 this morning. I've had several cups of coffee, but I am still a zombie!
=0)

Someone from Autism Speaks just called, and she is sending me the First 100 Days kit and adding in local resources. I orginially heard about Autism Speaks when my church was setting up the new special needs ministry. The director came to talk to us, and she impressed me completely. She has children with autism, and her level of involvement with them, the autism community, and with the outreach of Autism Speaks amazed me. It made me wonder how one woman could do so much for so many.

At times I feel completely overwhelmed. And then at other times, I feel like I should and could do more or share more or join more. My husband is always telling me to cut myself some slack. He's right, there's time.

Autistic Student Handcuffed For Singing In Class

“The bottom line he's in phys ed. And all the kids are making noise yelling, screaming and talking and he gets singled out for going 'la-la-la?'”
The parents of an autistic San Jose, California sixth-grader are expressing outrage that their son was put in handcuffs because he would not leave a class. via WLBZ

In a related article, this Gunner Moody's mother reports that she has gotten many negative responses about her son's IEP from his teachers, including this little gem, "I don't do IEPs." She relayed other incidents. "Prior to attending Bret Harte, Gunnar had been a student at Booksin Elementary where Moody felt his problems were misunderstood. She told of incidents that would hamper any child’s development including being locked out of his kindergarten room, being held down by an aide so hard that there were red marks on his body afterwards and at one open house a picture of a dog house with Gunnar’s picture inside. “His counselor, his own behavioral therapist put his picture in there. The principal saw my horrified look and immediately had it removed,” Moody said." (article written by Carol Rosen)

Teachers set the tone. They can make or break a child. Alex had a fabulous kindergarten teacher. She was a speech therapist for the special education department, and after working with these children in bursts as a speech therapist, she decided that she wanted to work with them full-time as a teacher. She had passion. And, she had help. In a classroom of 15 students or less, she had 2 full-time parapros. Alex thrived in her care.

Fast forward to this year, and things changed. On the very first day, someone yelled at Alex. He came home and quoted it verbatim and with the same intensity and emotion: "STOP SHAKING THE TABLE." He couldn't tell me who said this, but it scared him. I will never forget his voice or his face as he told me that. A few weeks later, Alex got in trouble for hitting a 3rd grader on the playground. Two 3rd graders said that they were "helping Alex" when he hit them. I still don't know what happened that day because the school's account of it changed every time I enquired, but I do know that he was again completely frightened. I started to lose my boy.

It is heartbreaking to watch your precious son spiral down into fear and despair. To see his emotionless face emerging from the school bus, silent and deeply unhappy. To cry and to beg to stay home. To get physically ill. To stop interacting with friends and family. I read a lot about childhood depression. I ran across something that made a lot of sense to me. True depression is a chemical imbalance that can be addressed by medicine or therapy, but it rarely strikes children as young as Alex. What he was experiencing was completely situational. When we finally removed him from the situation, he got well.

I digress. This year, in first grade special education, Alex's teacher had 13 students and one aide. It was a cross-categorical classroom that served all disabilities with the exception of the moderately CI children who had a classroom of their own. Thirteen IEPs, one teacher and one sour parapro who never smiled. Alex hid from her. I don't blame Alex's teacher. I think she was doing the best she could with what she had. Every time I saw her though, she would comment on how nice it was for me to stay home and how she wished she could do that or how she also had a 1st grader and wished she had more time with him or with her baby girl.

I don't think anyone is up for this type of challenge. How can one teacher manage the wildly diverse IEPs of that many students? Answer: she can't. Not without casualties like my son. Her style was great for the students with emotional impairments--firm, loud, and direct. To my son, she was a screamer, bullyish, and most of all scary. Yet, this is what our district says is the best placement for any child who needs a modified curriculum. Lumped together, given the exact same curriculum, exact same treatment. I've been told a few IEP meetings that our state has decided that allowing a child to be mainstreamed with an aide is the "most restrictive environment." Again, I cry foul. It might be the most expensive environment, but definitely not the most restrictive. I can't imagine anything short of an institution would be more restrictive than the environment he was in.

There are parts of the country that do right by special education students, but I think they are the exception. Teachers like the ones in Gunnar Moody's school are not adequately prepared or trained to handle situations like his, and the result is devastating to the children. People are naturally scared of the unknown or uncomfortable, but at the end of the day, and at the end of that IEP, this is a CHILD. A real child with real needs, real feelings, and the right to an appropriate education free of discrimination and bias.

We started the process to get Emily into the PLAY Project!

Our insurance does not cover any therapy unless it is rehabilitative in nature. So, all of Alex's and Emily's needed speech, OT, and PT is not covered. Facing tens of thousands of dollars out of pocket, which we don't have and can't get, we started looking into alternatives. Our county offers services on a sliding scale, and today we met with an agency that has the PLAY Project. As it stands, we will be paying $62/mo out of pocket for Emily's therapies. A huge relief and answer to prayer!

Life on a resident's salary usually pretty much sucks, but today it was a benefit.
=o)

Here is Emily's diagnosis letter from our developmental pediatrician. It says exactly what I can't find the words to say. It is edited for identifying elements only.




Dear Dr. M:

I had the pleasure of consulting on your patient, Emily, a 2-year-11-month-old girl whose parents have brought her to the Center for Developmental and Behavioral Pediatrics for the evaluation of her development.

Emily has qualified for services through the early intervention system based on language delays, but she is only receiving about one hour per week of programming. Her parents are seeking a diagnosis for her delays. She does have delays in language, problems with social engageability, and dominating interests.

In terms of her language, she has only about 100 words or less, and she mostly talks in one-word phrases, which is clearly delayed for a 2-year-11-month-old girl. She does some pointing now. There was awhile when she was not indicating what she wanted and would just cry. She does follow most “give” and “get” commands fairly readily, but she cannot answer questions that are more abstract such as, “What are you doing?” Most of the time she takes her parents’ hands to get what she wants. She will nod and seem to indicate what she wants, but she does not really make meaningful choices. She cannot point to various actions that are happening on the page of a book. She makes some animal sounds and imitates just her favorites, which include horses, dogs, and cats. Altogether, there is very little spontaneous speech and a real difficulty with interactions.

Socially, she does not interact the way a child her age should. She likes being around people but is often doing more parallel play. She can do some simply pretend play such as running a train on a track, feeding a baby doll, or putting a phone up to her ear. She can sometimes be shy, manipulative, and mischievous, which indicates some awareness of social norms. For instance, she will go after her siblings’ toys to make them mad. She also intrudes on people’s personal space, but in this case, she does not seem to understand that this is a problem. She does like rough-housing, chase games, and simple sensorimotor play.

She has a number of dominating interests. She does like to play by herself. She likes horses, cats, and dogs. She will pretend to be different animals. She will play with little characters and she will do so at length without referencing or including other people.

She does have behavioral issues. She is quick to become frustrated but she recovers fairly quickly. She can be intrusive and purposefully aggravating. She will throw temper tantrums frequently throughout the day.

She does not have much in the way of sensory issues. She has fairly good fine and gross motor control. She does not like adults to sing. She is very oral and puts things in her mouth. She does not mind loud noises. She likes to be barefoot.

PAST MEDICAL HISTORY: Past medical history reveals that her mother’s pregnancy was characterized by the loss of a twin early in the pregnancy with subsequent threatened premature labor requiring terbutaline. The mother also took Zofran and Phenergan for nausea and vomiting. Eventually, the pregnancy went to term and Emily was born by normal induced vaginal delivery. Subsequently, there was one hospitalization for rotavirus. Emily did suffer from failure to thrive beginning at around 5-8 months. She was subsequently placed on Neocate formula until she was over two years old. Subsequently, she “turned the corner” and did better. But in the meantime, she seemed to have food allergies to all kinds of foods that resulted in choking, turning blue, vomiting, diarrhea, as well as bloating. She was finally diagnosed as having allergic colitis.

REVIEW OF SYSTEMS: Review of systems reveals that she now can eat a variety of foods. She is a big milk drinker, which is possibly associated with frequent upper respiratory infections. She snores, she mouth breathes, and she drools. She “needs her adenoids out.” She sleeps fairly well most of the time but does wake up occasionally. She has some trouble falling asleep. She has no problem with urination or defecation now, but she is not toilet-trained. She has no problems with hearing or vision.

FAMILY HISTORY: Family history is significant for autistic-like symptoms in a maternal cousin, and one maternal cousin who also has some mild cognitive delays. On the father’s side of the family, there are two paternal aunts, one on each side of the father’s family, who have cognitive impairments. Emily’s brother, Alex, was diagnosed by me as having pervasive developmental disorder bordering on Asperger’s syndrome, as well as attention-deficit disorder.

SOCIAL HISTORY: Social history reveals a stable nuclear family with fairly good social support. The dad is a medical resident ***. The mother is going to school for her Masters in education, which she is doing online. The family moved from *** for the father’s residency in May 2006. Overall, Emily is described as somewhat challenging. She has a difficult, fairly stubborn temperament. She is not particularly easygoing.

OBSERVATIONS IN THE OFFICE SETTING: Observations in the office setting revealed Emily to be an alert, well-developed, well-nourished-appearing, young girl who was in no apparent distress. She had no real dysmorphic features, although she does have a small midface and somewhat hyperteloric eyes. I thought that her right pupil seemed a little bit enlarged compared to her left pupil. She definitely has a large head circumference. She took a little while to warm up but she eventually did so, and I got to see a good sample of her ability to interact. She was not typical in her social wherewithal, and her language was poor for age. She did interact with her brother, mother, and eventually me with some good initiation, some simple use of language, and some ability to sustain interactions. However, most of her play involved carrying a little horse around throughout most of the time spent. She did not have the type of eye contact or ability to play that would be typical of a nearly 3-year-old girl.

ASSESSMENT: My assessment is that Emily May is a 2-year-11-month-old girl with a significant history of delays in language, problems with social interactions, and repetitive behaviors that qualifies her as being on the autistic spectrum. It is my opinion that she has a mild autistic disorder bordering on pervasive developmental disorder not otherwise specified.

Today, I made an audiotape for the family that emphasized importance of the following set of interventions based on the findings of the 2001 National Research Council report (http://www.nap.edu/books/0309072697/html):
Twenty to 25 hours per week of intervention
With a one-on-one or one-on-two teacher-to-child ratio
That is engaging
Has a strategic direction
And starts early (between the ages of 18 months to 5 years)

Typically these interventions include:
special education,
speech and language therapy and
occupational therapy.
Intensive behavioral/developmental interventions of either the ABA or DIR types are essential! I suggested that the family enroll ­­­­­­­­­­­­­­­­ Emily in the P.L.A.Y. Project, which will train the family to provide 2 hours per day of intensive intervention.

I provided a packet of information on all of these interventions and highly recommended two websites:
1. The Your Child website (http://www.med.umich.edu/1libr/yourchild/autism.htm), an important and reliable source of information on autistic spectrum disorders as well as other developmental/behavioral issues.
2. The P.L.A.Y. Project website (http://www.playproject.org) where families can obtain information on our play-based approach.

Today, I am recommending that the family participate in The P.L.A.Y. Project through our center here. I also recommended that the family look into The HOPE Center at ***, and I encouraged them to enroll Emily in the special education preschool program, as well as seeking an extended school year.

I would like to see Emily back in six months.

I thank you very much for allowing me to consult on her.

Sincerely,

R. S., M.D.
Medical Director

Today was a complete rollercoaster. Emily was supposed to be evaluated for the autism program through the school district today. The social worker didn't show up, so this entailed the school psychologist observing her in the gross motor room--Emily's favorite place in the whole world. The three comments that the psychologist made other than questions were, "Her eye contact is great," "That's great, she let you know her sock was bothering her," and "Well, I definitely wouldn't pick her out of crowd."

Emily really did a beautiful job in the gross motor room. She was smiling and happy, used her words, waited somewhat patiently. It was hard to be so proud of her and yet so frustrated at the same time! If the psychologist had only observed her in the group-sing part or as she transitioned from something fun to something that required her to do something that was difficult or new! In the gym, it was melt-down after melt-down, then I was supposed to leave to attend a meeting with the district people. No one was paying attention to Emily, and I was afraid to leave her. I finally got the PT's attention and showed her where Emily was playing--all by herself. The aunt of one of the kids was in the meeting being a complete pain in the rear--"Well, he doesn't do XYZ, but that doesn't mean he is autistic." I passed this woman and the director of the autism program in the hall, and the director was saying, "He is very aloof, and this is a red flag..." That bothered me. The kid's parents were in there too, and they didn't say a word.

So, we left. Another week gone and still no closer to a placement. I had a bad feeling going in to today's events, and a worse one after.

On a positive note, Alex had his follow-up visit with the dev pedi. I am so pleased with the progress Alex has made lately! The secretary (wonderful woman!) also told me about another resource for the play therapy that is free to residents of our county! I made a call, and I have an appointment next week to see what we can do. If this goes through, it will be such a relief because I can use the training I get for both Emily and Alex.

Alex started therapuetic listening today. His OT said he loved it, and she wants to see how he does with it a few more times in the clinic before she starts him on a home program. I read the study she gave me, and the whole program looks so promising.

But, now I am sitting here trying to digest all this information and emotion, and I am feeling overwhelmed and alone again.

I don't even know where to go with this blog anymore. I feel like my entire life is all about autism now. Last week, we took our baby to Alex's developmental pediatrician. We were worried because she turns 3 soon, and her issues are persisting, and some are worsening. As of right now, she is considered as having high-functioning autism. With very intense therapy (at least 3 hrs/day), she can probably go to a regular first grade. Our dr is amazing, and so full of hope, but this was so much to take in. The diagnosis didn't really surprise us, although I was thinking more PDD-NOS than autism, but the level of intervention that needs to happen NOW took me back. The dr did not mention all of this when he first saw Alex in September (I think it was) last year because Alex was already six. I just wonder how different things could have been if he had gotten intense, appropriate therapy at a much earlier age.

Then I remember taking Alex to his 15mo check-up and telling his then pedi about his issues. He totally dismissed me and said that I couldn't compare Alex to other kids because they all develop at different levels. I knew then that something was very wrong, and it took until Alex was almost 3.5 to even start early intervention. We switched pedi's around this time, and our new pedi immediately had me contact Early Intervention. When the school district assessed him as mild-moderate autistic, I refused to let them label him as such. So many other people around me told me he was not autistic, and I took that to heart. He did get EI, just not a specific program for autism. Did I do him a disservice all those years ago? We won't ever know, but my heart is breaking for those decisions in light of the new information we got for Emily. I just did not know any better. Please God, don't let my son blame me. Let him know that I have and always will love him and try my very best to do what is right by him. Please God, let him know this!

Therapy is not cheap. One program for Emily (the P.L.A.Y. Project) is $3,900 and another one (ABA based) is $9,600. If Emily is accepted into our school district's autism program (which our dev pedi helped to set up!), she will be getting a combination of PLAY and ABA. I still want to do at least the home-based PLAY Project because I think that will help Alex as well. At this point, I am praying for a miracle to be able to afford this. I have 3 more quarters to go before I finish my Masters, and I can start making some money. I am a bit panicked because Emily's therapy cannot wait for 3 quarters--it has to start now. I spent most of yesterday morning applying for grants, and I am praying that we get them.

Anyway, I need this blog to get all of this out of my system. I feel very alone most days, and I really don't have anyone to talk to about all of this.