Autism and the Gynecologist

It took me weeks to get up the courage to make an appointment with a doctor’s office that I had no prior history with.  Alanna turned 26, and with that she no longer has any private insurance through her parents. We had to find a doctor that accepted her insurance. I pleaded with my own OB/GYN’s office to let me pay cash, just to not have to endure the barrage of questions, the new setting, and the possibility that the staff won’t understand.

It was not a possibility, it was a fact. There was little history taken other than name, address, and the basics. No spot to put down any other conditions, you know, like autism. The wait was short, the nurse came in, took her blood pressure, weighed her, and told her to strip down and put on the usual gown and paper lap cover.

When the Nurse Practitioner (NP) arrived, she was taken aback by the number of people in the room. Alanna, myself, and Alanna’s caretaker.Certainly more than the average, but should there had been any questions, Alanna would need us to provide the answers.

I immediately introduced everyone. She approached Alanna and asked, “why are you here?” I explained in my low voice (you know that one where you try to tell someone something, without being disrespectful to Alanna), she will not be able to answer your questions. “That’s okay,” she stated bluntly. Yet she proceeded to ask Alanna more questions, and “yes” was the answer to all of them. I explained that she answers yes to everything. “That’s okay.” She continued, “do your breasts hurt,” “yes,” “does your throat hurt,” “yes.”  I tried my best to be calm and explain that she will have to examine Alanna, and if she sees her wince, that would be an indication of pain, but Alanna will only respond “yes,” to any questions.

Alanna laid down on the table and the NP examined her breasts.  Then asked me, “You want me to do an internal?”  “Yes, I do.” “Is she sexually active?” “No, I hope not, but I want her checked out.” “Isn’t she supervised at all times?” “Yes, as much as we possibly can, but the research will tell us that it doesn’t take long for abuse.” She agreed that girls with disabilities are highly likely to be abused, but didn’t think an internal was necessary. “I’ll try, but if she grimaces or moves, I’m going to stop,” she told me. Really, have none of us grimaced or moved when the specula was inserted.

I’m not sure of the exact recommendation, but have’t many of us gone to the GYN for regular checkups following menstruation?  Isn’t this part of a yearly check-up?  Does something have to be wrong?

Alanna struggled to follow the direction to move to the end of the table.  I explained she can’t follow that direction, I will help her. As I lifted her mid-section and moved her down, I asked, “is that enough.” “No,” with no further instruction.  I tried more, “how about now?”  “No.” So I moved her more, all the while thinking, I should just leave.

The NP told me to stop I was going to hurt my back. How about you just tell me when I’m there so I don’t have to keep moving her inch by inch? Is what I was thinking, but didn’t say out loud.  The fear that you may insult someone who is about to look inside your daughter’s vagina, keeps your mouth shut. I got her to the edge. The specula inserted, and the NP says, “I’m having a hard time seeing her cervix.” “Do you want me to move her more?” No response.

She said she got the pap smear completed and that we should get the answer in two weeks. She then asked if we wanted birth control for preventative reasons, in case something does happen to her.  She then explained that Alanna doesn’t have to come back for 3 years.

What other 26-year-old woman gets that advice? Do you want birth control in case your raped, and no need to return for 3 years? How do we ensure the health of our women with ASD if no one thinks it’s important? Between 39% to 68% of girls with developmental disabilities will be sexually assaulted before the age of 18 according to a study by Mahoney & Poling (2011).  There are many studies with different numbers, some higher, some lower, but not a single study that focuses on sexual abuse for those with disabilities will state that the numbers are the same as they are for the typical population. Is it 3 times more likely, or 80% higher than the average?  WHAT’S THE DIFFERENCE, it happens at alarming rates, or rates that should be alarming.

But apparently not alarming enough to the NP that examined my daughter today. NOT once did she ask, was I concerned something has happened? Is that why I’m there?

I have traveled nationally to discuss the challenges of those more profoundly affected by their ASD and sexuality.  How to stay safe, how to engage in appropriate self-satisfaction, skills needed to understand relationships and/or to stay out of jail. I preach that parents must take their children for examinations to ensure they have healthy reproductive organs. And if needed, so they can talk to a professional that might help to guide them in topics they are too nervous to discuss with their children.  Billy and I understand the likelihood that Alanna may be abused is high and we do all that we can to protect her.  Statistics tells us that the perpetrator would probably be someone she knows.  I take her to the doctor so she can be examined as part of protecting her.

How would I know if my daughter was abused unless someone examines her? How would I know if she has an STD, or a cyst, or any medical condition unless someone examines her?  Alanna never complains of pain, once she does it may be too late. Alanna can’t tell me if someone has hurt her, or coerced her.  What I asked was to have my 26-year-old daughter to be examined and treated like any other 26-year-old woman. That this examination be treated as though it was important, that Alanna was somebody who deserved to be examined, that her body was as valuable as the next person that laid on that table, able to scoot themselves to the edge.

Advertisements
Posted in Uncategorized | Leave a comment

My letter to the DOJ regarding the JRC over 1 year ago

August 21, 2013

Department of Justice
To Whom It May Concern:

I am not the first person to reach out to ask for help with regards to the Judge Rotenberg Center (JRC), but hopefully I will be the last. I am a Board Certified Behavior Analyst (BCBA), and recently had the opportunity to visit the JRC for a two day visit on April 24th and 25th. After my visit there, I will be forever changed.

I am trying to express my concern, not for the more obvious reasons as others have presented to you, because of the use of the Graduated Electronic Decelerator (GED) device, but instead because the agency does not follow best practices in the field of Applied Behavior Analysis, and by not following best practices they increase the probability of clients having to remain with them and remain on the device, almost guaranteeing their population/income. Additionally, I want to point out the lack of science employed at a place promoting itself to be the opposite.

The JRC does not utilize best practices in the area of Functional Assessment of behavior. Please review the video on the JRC website. (From the Home page, Contents, scroll down to Optional Court Auth, scroll further and click on Presentation at FIT 2011, Click on video #1, start video at 7:00.) Below are highlights of that presentation.

Dr. Israel states in this presentation,

“Positive Behavior Support people have carried the day and aversives are now largely either banned by regulation or law or so politically incorrect that nobody wants to use them or publish about them anymore…Journals no longer really show what the most effective procedures are, they show what the most effective procedures are that are politically correct.”

JournalPolitcalCorrect

I am positive that those individuals published in those journals would disagree with Dr. Israel’s stance that they are driven by political correctness when designing effective interventions for the individuals they work with. Dr. Israel does not provide any research to back his opinion that there has been a movement away from aversives, or that interventions that do not use aversives are less effective.

functionalassessmentcoverall

Standard procedure in the field of behavior analysis is to conduct a functional assessment of an individual’s maladaptive behavior in order to identify the function, design a treatment protocol, and teach alternative functional ways that the individuals’ needs can be met. Functional Assessments are conducted through direct observation of the individual in multiple settings, interviews with those close to the individual, review of evaluations and/or assessments, data collection, and if those procedures prove inconclusive, experimentation in a safe environment where hypothesis of the function of the behavior may be manipulated in order to ascertain a precise function/cause and intervention. Without knowing the function to a behavior you can not address the behavior, nor teach an alternative.

Dr. Israel’s stance on what he terms, “standard functional assessment,” has no research to validate his claim that it is equally as sufficient as currently accepted practices. In the same video as referenced above, Dr. Israel states, “from my perspective the safest procedure is simply to cover all the bases. Just arrange the environment so that you’ve covered all the functions…(reads from the above slide)..When you follow this approach, as we have, then the standard type of functional assessment adds absolutely no additional information or strategies that have not already been taken into account.” There is no research to back Dr. Israel’s approach to assessment. In addition, it is not ethical or necessary to remove access to all these things, attention, escape or tangibles, on the assumption that one of these may be maintaining the behavior when we have methods for finding the actual function and therefore the appropriate solution/intervention.

wishfulhopenoaversives

Dr. Israel asks his audience to consider these questions, above in the slide. His input after reading the first question is “I don’t think it is.” However, again he does not offer research based evidence of this, strictly opinion. Question Number 2 highlights Dr. Israel’s opinion of professionals in the field with statements of, “current fascination” and “wishful hope.” Individuals in the field of ABA utilize functional assessment to determine the most effective treatment for their clients, with hope for better outcomes for their futures, not to avoid the use of aversives.

The JRC does not utilize best practices in the use of punishment/consequences. Punisher assessments are not conducted, a limited choice of aversives is utilized at the facility. In the field of ABA punisher assessments are conducted to determine what punisher provides a desire to avoid the consequence without an increase in target or other maladaptive behaviors. Punishment is a very personal event because what decreases behavior for one person, may not for another. Simply removing an earned token for some individuals can not only be punishment, but may increase aggressive behaviors; therefore this would not be the chosen intervention. The JRC does not individualize the punishers chosen for its residence beyond number of GED devices placed on an individual or strength of the shock.

Best practices would tell us that a behavior should receive the consequence immediately following the behavior. Lerman and Vordran state, “Current knowledge indicates that the mild punishers typically used in clinical settings will be ineffective unless the consequence immediately follows problem behavior…. teachers and caregivers should be concerned with selecting punishers that can be

readily delivered as soon as the behavior occurs (page 445).” By design the JRC is not able to implement the consequence to a behavior within a short amount of time. The JRC describes the procedures that cause the delay and shows a brief clip of this on their website. Please look at: www.judgerc.org click on contents, click on Optional Intensive Treatment, click on films, scroll down (3)(g) to title – Explanation of the GED by Dr. von Heyn. Dr. Heyn describes the process, “If the staff in the room see a behavior that they think is targeted for a GED, what they need to do is pick up the recording sheet, and it will say John Doe on top. They need to go to another staff member to say, “John Doe just punched his head, the consequence says GED,” so they need to confirm the existence of the behavior with another staff member and the consequence. They then would pick up the remote transmitter (inside of a plexiglass case)…make sure the case says, John Doe on the front, so they’re not picking up somebody else’s. It produces a slight delay between the behavior and the treatment. The staff are trained to go through this procedure to make sure there are no accidents. Pick up the device, press the button and say, “John, there’s no punching your head.” 10:10 seconds into the video is a young lady engaging in hand flapping behavior. You will see that she stops the behavior, and that the shock will be implemented after she has stopped and is appropriately engaging with a puzzle. Due to the delay in receiving the shock, she is actually punished for appropriate behaviors. (This video has since been removed from the website.)

On the day of my visit, one young man engaged in several maladaptive behaviors and did not receive the shock that was called for in his behavior program or other assigned consequences because no one was there to witness it, as he is in a 5:1 or greater client to staff ratio. When I observed I saw staff talking among themselves rather than observing the individuals and delivering the consequences as described in each person’s behavior plan. This inconsistent application of the consequence can maintain maladaptive behavior because people are successful in demonstrating the behavior when no one catches it. Therefore they sometimes can engage in dis-allowed behaviors without consequence. When this occurs, this can result in maintenance or increase of the behavior. If aversives are used they need to be used consistently.

The JRC does not utilize best practices in the use of reinforcement .

The JRC uses multiple level “contracts” with students, many of whom are unable to comprehend the complexity. These contracts are broken down into these areas: Less than a day (LTD), More than a day (MTD), Overnight (ON), Special (SPC), and Transport (TRA).

The behavior plans that I reviewed provide for an extremely thin schedule of reinforcement and required that the individuals have zero levels of behaviors for long periods of time in order to earn minimal reinforcement, i.e. flavored water.   There is nothing in the literature that would support the behavior intervention plans that I reviewed. Professionally accepted practice calls for reinforcers (like punishers) to be individualized (selected after an analysis of what the particular person finds punishing or reinforcing). It is unlikely that any single (or even several) reinforcers would be reinforcing to everyone. For this reason, a quality behavior program would begin with significant effort directed toward identifying the specific things a person finds rewarding. These could be as diverse as chocolate for one person, a break for another, or hand lotion for a third.

The JRC parades large contract stores and game room environments in their presentations to show an elaborate array of items that clients can either purchase or engage with (Please see pictures below).

BigRewardStore

The Big Reward Store for the developmentally disabled population. During my two day visit that included more than 6 hours of observation, only one student was seen using anything in the Big Reward Store. That student was using the ball pit.

teenlounge

This room provides more games and lounging. It is called the Teen Lounge. No clients were seen in this room during the 2 day visit.

contractstore2 contractstore3

contractstore1

The photos above are of the Contract Store. Quote from the website: “We named it the “Contract Store” because the students also have to be passing their weekly behavioral contracts in order to earn the privilege of using it.”

Students must not only earn points or money for completing their academic work, but they must also maintain “weekly behavioral contracts in order to earn the privilege of using it.”

Please note the contents of the “Contract Store.” This store has a considerable number of items available that would generally be of interest to girls or women – lots of jewelry, clothing, pocketbooks, wigs, etc. The population at the JRC is more than 70% male. When I questioned a Case Manager regarding this, she indicated that some of the students like to buy things and send them home to their parents. The implication was that students who worked hard on their academics and met their “weekly behavioral contracts,” want to purchase items for their parents. I find this hard to believe. If this is true, I find this is a way to keep parents attracted to this facility. Imagine receiving a gift from your child who you felt the need to place in an environment such as the JRC.

Reinforcement on a more immediate basis, i.e. immediately following positive behaviors, as would be professionally accepted, was not witnessed on any occasion during the 2 day visit. All reinforcement is earned over time, sometimes over a significant length of time. In the same way that delayed punishment is ineffective in reducing maladaptive behaviors, delayed reinforcement is inappropriate, especially for individuals who have cognitive disabilities because they are unable to relate the reward to the desired behavior.

The JRC calls access to the Big Reward Store, the Teen Lounge and the Contract Store ‘rewards’, because they cannot call them reinforcement. Reinforcement by definition must have a direct correlation to the behavior that occurs before it and it must increase the behavior we wish to teach an individual or have an individual demonstrate with more frequency.

The JRC does not teach new or replacement skills including ways to communicate needs/wants.

Another important behavioral practice is teaching new or replacement skills. This practice must begin with a functional assessment. A functional assessment determines the purpose of the behavior, and then provides the clinician with information to determine an intervention or treatment plan. Functional Communication Training (FCT) is a crucial part of any intervention plan. The Lambert, et al study showed, “All trial-based FAs resulted in identification of behavioral functions, and subsequent FCT led to reductions in problem behavior and increases in communication (Pg. 579).

During my time at the JRC I did not witness any teaching of new skills, or replacement skills. If we do not want individuals to engage in maladaptive or inappropriate behaviors we must teach the alternatives. One client’s program applied the GED for standing up without permission. We were informed that they were trying to teach him sign language, although they all recognize that he is unable to manipulate his fingers because they are short and stiff, and no teaching of sign language was observed. Instead of requiring a skill much too difficult for the client, they could have provided him with a bell or other auditory device he could access when he desired to stand up, so that staff would be notified and able to supervise. Instead at the JRC they simply expect the individual to figure out what he is allowed or not allowed to do based on when he/she gets shocked. They provide little by way of instruction to help individuals with disabilities learn the desired response or replace maladaptive behaviors (for example, turning over a work table) with adaptive ones (using a sign language gesture to request a break from the task).

Additional reinforcement concerns include the use of dispensers to deliver reinforcement to individuals who utilize the computer programs as part of their education at the JRC. Gumball like dispensers (see photo below) are connected to computers and deliver reinforcement at a predetermined schedule based on positive responses from the client. This eliminates the need for staff to deliver reinforcement, and the need for staff to directly teach clients. The lack of human interaction between staff and clients not only creates a sterile environment; it does not teach the clients appropriate behaviors in social situations that would help them to succeed outside of this facility. In fact, staff are specifically prohibited from having any social interaction with the students. This is not only cruel, but it does not offer opportunities for students to learn appropriate social interaction.

The JRC writes vague goals and behavior intervention plans that are subjective to the reader – Behavior Intervention Plans should be written such that any individual reading them would be able to implement them. Target behaviors in the documents reviewed provide broad explanations, i.e. ‘Loud Noises above staff’. Each person reading this behavior definition can interpret it differently, therefore delivery of a punishment may not be consistent, and would lead to intermittent reinforcement, which is the strongest form of reinforcement to maintain a behavior.

The JRC punishes behaviors that are not deemed dangerous to the individual or others, under the premise that they are precursors to maladaptive behaviors. One of the men observed during this visit, according to his behavior intervention plan, receives a GED skin shock for standing up unassisted. It was explained that this may lead to his falling and getting hurt, but also that this may be a precursor to an aggression. Standing up is the precursor behavior to many other behaviors that all of us partake in each day. This highlights why a functional assessment would be necessary to conduct, identify appropriate precursor behaviors, teach alternatives and avoid implementing punishment procedures for everyday activities.

The JRC does not utilize best practices in the teaching of individuals with autism – The JRC explained that they pull students out to do “ABA” or discrete trials for those who have this written into their Individual Education Plan. They do not implement these strategies as a methodology, but instead as a pull-out much like speech or OT.

The JRC has developed its own computer programs with no curriculum in mind for those individuals who are more profoundly affected. Simple matching tasks are repeated over and over, with no human presenting the information and looking for why a student may be responding incorrectly. No alternative methods for teaching are provided. All grade level classrooms provide instruction in this model – all computers are set up along the peripheral of the room, and all students face the wall.

classyoung

(Please note those children wearing backpacks are strapped to the GED device.)

Clients requiring toilet training are taught in the bathroom, all day every day. All activities are conducted in the bathroom, teaching and EATING. Please see the pictures below of the bathroom area. On a document reviewed, the client’s classroom is listed as “Intensive Toileting Room.”

Bathroom3              Bathroom2Bathroom

The JRC’s treatment of individuals in their care is inhumane – not just because of the use of the GED, but because their practices almost ensure that the students will require the intervention longer than is necessary. They punish behaviors that are not a danger to self or others. This is not best practice in the field of Applied Behavior Analysis.

What is the alternative?

There are parent pleas in support of the JRC and I have to say I understand. I also must believe that these parents do not know of any alternatives and that they had been led down the wrong path for so long, that this was their only alternative.

I am this parent, the one who searched for answers, the one who thought that I would have to place my child in an institution, and the one who fell prey to the wrongdoings of so many professionals who recommended so many “treatments” in hopes that they would be the answer that my child needed.

I am the parent of three children, two with autism. My youngest child was the one we felt we would never find the answers for, and about whom so many professionals had made promises. For years we were unable to explain his self-injurious behaviors. His aggressive behaviors included biting, hitting, pinching, and scratching. His self-injurious behaviors, which exceeded 1,000 times a day, consisted of biting himself; his palms and fingers were split open from him biting them. He would cry for hours on the couch unable to be consoled, strip his clothing off and urinate and smear feces everywhere. He needed to be watched at all times, as he would gain access to dangerous substances, one time pouring citronella oil over his face leading to a phone call with poison control who let me know that this substance could cause blindness. He was a child that ran away regularly into dangerous streets and situations and who would climb to high heights that were unsafe.

In May 2002 when he was about to be 10 years old, he had been kicked out of his school placement and placed on home instruction due to not only his self-injurious behaviors, but also aggressive behaviors. The home instruction individuals only exacerbated the situation, and then left us without services. By August of 2002 I will say that I still loved my son, but I dreaded each day hearing his bedroom door opening and knowing that he was awake and my day was about to begin. Had you met me at that time you would have thought I was a battered woman because I was so frequently injured by my son.

We were blessed to have found Kennedy Krieger Institute (KKI) in Baltimore Maryland. In Nov 2002 we had an intake at KKI, and by Feb 2003 our son was admitted. 4 ½ months within this unit saved our son’s life and ensured his future was brighter. At KKI they conducted a Functional Analysis of the behaviors for 3 months, designed a behavior plan, implemented the plan, made modifications, trained my husband and myself, and trained staff in NJ to help transition him back home. June 26th was our 10 year anniversary of leaving KKI, and our son has remained home with us for that entire time. He learned more during the first 3 years after leaving his 4 ½ month stay at KKI than he had in all ten of his years prior. At the age of 21, he still lives home, all 5’10” and 185 lbs of him, he is a pleasure to be with, he goes with us wherever we go in our neighborhood and community, goes on vacation every year to Disney and there is no concern about his behaviors, because we still have a behavior intervention plan that is effective.

I am now a Board Certified Behavior Analyst . I went back to school after our experience at KKI, in order to help other families not end up the way that we did, taking the advice of those who only caused more damage. I now work with other families and individuals who have severely dangerous and disruptive behaviors so that they can get the help they need as our son did at KKI.

Are we free of aversives in our home? No. I am not someone who will tell you that the use of all aversive procedures must go. However, there are more effective aversives that can be delivered immediately and without pain. In our case we use an air horn that you find in a party supply store, if our son aggresses we push the air horn. While considered an aversive, it did not cause pain. We have not used it in three years. Our son and others with whom I have worked and who went to KKI are success stories and demonstrate how these types of severe behavioral problems should be addressed. All now live lives better than their families could ever have imagined.

Conclusion

I ask that you ensure best practices are utilized at any facility that makes promises to help individuals with autism and other disabilities. I beg you that you help those who have no voice to be heard. Documents that I received from the JRC are not reflective of what I saw during my stay there. All parties advocating for children must know that there are other alternative that are effective. Skinner was an advocate of reinforcement, and reinforcement is missing from the JRC, no matter what they claim.

I thank you for your consideration of this letter, and should you have any questions, please do not hesitate to contact me at brickposse@comcast.net. (My original letter had my phone number, I received no call.)

Anxiously waiting an answer,

Bobbie J. Gallagher, M.A., BCBA

Other pictures from JRC

Electrode2prong Electrode2 ElectrodeRemoteReceiverBatteryPackbackpackfannypack

References

Hanley, G.P., Iwata, B.A., and McCord, B.E., Functional Analysis of Program Behavior: A Review, Journal of Applied Behavior Analysis, 2003, 36, 147-185 (2)

Lambert, J.M., Bloom, S.E., and Irvin, J., (2012) Trial-based Functional Analysis and Functional Communication Training in an Early Childhood Setting., Journal of Applied Behavior Analysis, 45, 579-584

Lerman, Dorothea and Vordran, Christina, On The Status of Knowledge For Using Punishment: Implications For Treating Behavior Disorders, Journal of Applied Behavior Analysis, 2002, 35, 431-464

Linscheid, T.R., Iwata, B.A., Ricketts, R.W., Williams, D.E. and Griffin, J.C., Clinical Evaluation of the Self-Injurious Behavior Inhibiting System (SIBIS), Journal Of Applied Behavior Analysis, 1990, 23, 53-78.

Worsdell, A. S., Iwata, B. A., Hanley, G. P., Thompson, R. H., & Kahng, S. (2000). Effects of Continuous and Intermittent Reinforcement for Problem Behavior During Functional Communication Training. Journal of Applied Behavior Analysis, 33, 167-179.

Posted in Uncategorized | Leave a comment

The Autism Theme Park

The Autism Theme Park

The phrase,” life is like a rollercoaster ride,” could not be more appropriate then when applying it to a family with a child with autism. The ups, the downs and the turns, and now in our day and age with the flips, backward motions, and at times dangling in mid-air without a net, it gives a clear visual metaphor. Being a family with three children, and having two with autism, we have entered this theme park multiple times.

So there we are waiting in line, getting ready to climb onto this ride, the beginning stages of diagnosis. This is the slowest of the rides in this theme park, but promises to deliver quite a surprise at the end. The wait is long so we become sidetracked and lost in the conversation of those around us. Everyone is trying to offer us advice or calm our fears. What parent of a child with autism hasn’t heard a story about a child that didn’t speak until they were 7, or how other typical children have engaged in the same behaviors of toe walking or handflapping. We understand others desire to hedge our fears, but we continue to move through the line. Although there are those climbing on this ride before us, we tend not to watch, it is too scary to look up, and they are all too far away to ask any questions of, or discuss which path they followed to get to the top of this ride. Then, strategically placed in front of us is the exit, where we get the opportunity to see those that have finished the ride, and just looking at their faces we get a sense of what we might expect. So we scream out –“how was it?” And the responses are mixed, not offering us much in the way of answers. We are just going to have to take this ride and see for ourselves.

As we reflect back on why we came to this park, we find it hard to believe that we belong here, so little information was available about this place. Several have pointed us in this direction, but no one could say whether or not we’d like it, or get the answer we were looking for to help Alanna.

Alanna is a beautiful red-head, actually it is orange, with an incredible smile, a strong desire to laugh, and truly the best hugger ever, she just melts into you and gives all her weight to the hug. She is the 2nd born or the middle child, and has an older sister, Chelsea, that loved to be the center of the attention when they were toddlers. Chelsea was quite advanced in the area of language, speaking in sentences at a young age. We were often told not to compare Alanna to her, which I didn’t I was just looking for something as simple as “mama.” Although, “mommy” took until she was almost 4 years old, she did say “butterfly,” once or twice, “Love you,” at the end of bedtime each night, and a few other spontaneous words that always reinforced those that would tell us, she knows how to speak, she just doesn’t want to. Alanna was happy being anywhere in the house, and could be occupied with ABC blocks or plastic numbers for long periods of time. She would line up crayons in color order –red, blue, green, yellow, orange, purple.

We went through some tough phases, such as the time she gave up bathing. Alanna loved baths, and would request them unprompted, then one day she just refused to climb into the tub. To this day there is nothing I can think of that happened, except maybe she hit her head on the faucet and was afraid it would happen again. Each time we tried she would scream and cry, and I don’t mean a simple cry of a 2 year old, I mean a hair raising scream that would lead any listener to thinking we were causing her great pain. Finally, we couldn’t avoid this anymore; we had to address the bath routine. So for 11 days straight, I put her in the tub at the same time every night and bathed her through the screams and cries hoping that she would get past this, and on the 11th day she saw the towel and said, “bath?” What I wouldn’t give to know what had happened.

Alanna attended EI, at that time a center based program, for just a short period of time, because of all the delays in trying to figure out where to look for help. At one point we had tubes put in her ears, and then we were promised she would be speaking in 6 months –looking back that was six months wasted. We did not get into the EI program until Oct. 1993, and she would turn 3 years old and age out in just 4 months. Although those that worked there would attempt to guide us to getting a diagnosis by offering suggestions, but no one would just come out and say –autism—or just say, “why don’t you look this up on your computer.” Instead, they would tell us to go see specific types of doctors. Sort of like trying to figure out where you are located on a theme park map and how you get to the next ride, only to find out you went the wrong way and the map was upside down. For those of us without insurance, this advice often had to be tabled until it was financially possible, again adding to the delay in getting a diagnosis. Looking back I don’t know now how much a diagnosis would have helped, since the services she was receiving probably wouldn’t have changed one bit. However, it would have helped us to be able to look up information and do the research for ourselves what would be best for her.

But here we were, we reached the front of the line, and have climbed into our car. Yet for some reason we feel as though we are getting nowhere, we thought this was going to be a thrill seeker, instead it is just a gentle but agonizing never ending spiral, seeming to pass the same people, places and experiencing the same events each day, confused by the lack of communication from our child, feelings of guilt about not doing enough, yet also not knowing enough and not getting any further ahead. The pediatrician offered little help, we kept going. Although this ride is slow, time seems to move too quickly with each day that passes, this only brings more anxiety about the end of the ride. 3 days before her 3rd birthday –Feb. 21, 1994 the school’s contracted neurologist diagnosed Alanna at our home during an evaluation — Infantile Autism. That’s the surprise at the end? This was no real surprise, more like a relief — finally off of that spiral, and now we can get on the other rides that required this diagnosis, like a height requirement, you can’t get on the rest of the rides in this theme park without meeting this criteria. So now we have a bit of a nauseous feeling in our gut, I don’t want to do that one again, but at the very least it has prepared us for the next ride.

Enter here signs hang above the entrance to the next ride – The IEP Process. Oh boy, “process,” the very words lets us know this ride will be much more technical and complicated. Again we jump in the line, only this time we stand next to some of those we saw go before us on the previous ride, we’ll ask them what they are doing to prepare for this ride and maybe we’ll have a better game plan before climbing into our seat. However, each person we ask has a different answer, and most look as confused as us. We finally get to the front of the line. We thought this was going to be long and complicated, but actually it was quite simple — our case manager showed up at our home, while we were celebrating Alanna’s 3rd birthday with family and friends, and just told me to sign where indicated, this would allow them to put her in an out-of-district placement they had shown us a few days back. Wow!! That was quick and painless, but at the same time not really worth getting into the line for — was that really all there was to it, why were so many others wanting to get on this ride, do they know something we don’t?

We tried to follow our map to the next ride, but somehow we’ve ended up back at, “diagnosis.” Ugh! How did we get here again, we meant to get on, “now you can move on with your life.” We try to back out of the line but we can’t, why are they making us take this ride again! All the same people we saw last time are here again, what felt like a gentle spiral last time, seems to have sped up and causes even more nausea. Austin is not talking, he’s beginning to walk on his toes and flap his hands. NOT AGAIN!! Here we are going through all this again. This time was easier, we knew exactly who to contact and how to get on the “list” to get services, we were pros at this part. Then again, in 1994 there weren’t many services or choices anyway, so it was a simple maze to figure out.

Now we were expanding our knowledge, we took a different path to get to the IEP Process ride this time, and instead we jumped onto the parent workshop train — we found a COSAC parent support group, then we took the 6 week Parent Series on Behavioral Teaching and Educational Rights learning not only how to help our child with behaviors and skill acquisition at home but also that we should participate in writing the goals and objectives for our children. This train ended up at a Lovaas conference in NY where we met others in the same situation as us. On the way back to the park we took a brief stop at another workshop specifically about IEPs from SPAN and suddenly learned much of what we did not know this first time around. We learned how unethically Alanna’s IEP was handled, having us sign it while at a birthday party, not letting us know that we have options, and so many more infractions of the NJAC 6A:14. Well we shouldn’t be surprised, the ride operators at most parks are seldom enthusiastic or informative, and when you do ask questions they appear to be annoyed. I’m sure if they could they would say, “just get on and be quiet, we’ll run this ride.”

Now we know why so many were getting onto the, “IEP Process” ride last time. We weren’t told the first time we got on that there were two entrances — one for those they can pull the wool over, and one for those that know how the game is played — this time we entered through the latter, there was no way we were going to let our children‘s lives be led by these ride operators that did not have their best interest in mind. By no means was this a short ride, actually it took us through Due Process Cave — a dark and scary place that you are never quite sure you will exit, and even if you do will you be unscathed.

This time we went to our district with specific demands of what we wanted not only for Austin, but also for Alanna. They refused and we contacted Margaret Mignonia, Esq. The weeks between written responses and reactions dragged on for 7 months, while we financed a full home program for both children. Thank goodness for family members that came to trainings and worked with our children without any hesitation. After a very long mediation meeting, we had all signed an agreement — Alanna and Austin were going to get 25 hrs per week of individualized instruction provided by a reputable outreach service in our home.

The mediation meeting lasted so long that I had to leave and take Austin to Dr Boyle for an evaluation. While in the waiting room, Billy calls me and says “go ahead with the evaluation, but we may not need it, we’ve reached an agreement.“ My excitement and sense of relief came over me on the ride home, I just cried uncontrollably, the fight was finally over and our children were going to get what they needed.

However, the next day a messenger arrived with a package that we thought was going to contain the paperwork to move forward with the agreement, and instead what we received was a single piece of paper, from the district’s attorney, that stated — the district will not fulfill the agreement made in mediation, and that we should “proceed as necessary.” WHOA!! We are deep into Due Process Cave, it is so dark you can’t see your own hand in front of your face; I reach for Billy and hope we make it out.

The final month was agonizing, we couldn’t keep up this home program on our own much longer, even family members are starting to wane, this is difficult. Finally, an agreement. Alanna and Austin will go into the district’s program but with training from the Outreach Program we hired and some home hours. We see a glimpse of light up ahead. But then the light began to fade, and we were going backwards, heading back into the dark — what on Earth?? 5 short months after this agreement, the district calls an IEP meeting and discontinues the home program, AND the staff training, which was useless to begin with because the classroom teacher doesn’t have to do what the consultant says anyway, they only have to consider it — WHAT?! Why would we fight for 8 months, to only get 5 months of something, only to find out it was a waste of time, because the teacher disagreed with the consultant that we felt best knew what was right for our kids.

I don’t want to go back into the darkness of the Due Process Cave, but I have to. Only this time our attorney was off having twins, and caring for an aging parent, so she referred us to Herb Hinkle’s office. Herb explains to us all that we will have to do, but this will take quite a bit of courage, something that no one should have to endure. We must discontinue any home services and additional therapies that we are providing, and we must allow the district to implement their program as they see fit, even though we know it is not appropriate. Can you imagine allowing the ride operator at a theme park to be in complete control of your child’s future? There has to be a better way. This is the only way to prove it they do not have an appropriate program for Alanna and Austin.

After long consideration, we agree — if this is the only way we will get what they need.
The agony of watching our children regress for the sake of proving a point was unbearable. Had anyone told me in the beginning that this ride would take 7 months to get off, there is no way I would have jumped on, thank goodness I didn’t know. Alanna, who had limited language to begin with, now she had stopped talking, she stopped requesting even preferred items, stopped watching favorite movies, and instead with each day she would spend more and more time hiding under her covers in the corner of the dining room. I took a photo each day to show where she was. She just hid under the covers and rocked, losing all that she had gained. I brought up these concerns to the school psychologist and he told me that she was “selectively mute.” What is he talking about, she spoke before, she sang songs, she asked for her “baby” before bedtime, she was moving ahead with all that we provided, and now that she was only in their program she is regressing, she is not selectively mute.

Austin just cried, each time I would observe him at school he was crying. He refused to sit in his chair, something he was able to do for up to two hours when we had the home program. Now they were working with him on the floor, or anywhere he would sit still, because they could not get him to sit without crying. The programs the district tried were so far beyond his ability that he just cried, and cried with complete frustration. And all I could do is watch, while administrators and attorneys made decisions over what was appropriate. How can this be fair?

Finally I see that light again showing us the way out. Our case manager contacted the director of the Outreach Program we had used in our home and they came up with a creative idea of how to make everyone happy. Alanna and Austin would get the “home program” we wanted on neutral ground at the Outreach’s office. Oh my gosh, look not only is there light, is it the clearest blue sky — not a cloud to be had, this truly was the end of this horrific ride. Okay, two trips through due process is all anyone can take, nauseous doesn’t even begin to explain the feeling in my gut, my knees and my heart, but now it is all better. We are just going to jump on this slow moving trolley that takes us out to see the sights and for the first time since their diagnosis, we are relaxing and enjoying the view.

Alanna’s language quickly returned once being taught by those that understood what she needed. She has never reached the level of conversation, but gets her wants and needs met, and can answer most questions about topics she has been taught. It will always haunt us, did we lose too much time while we had to go through litigation. But if we didn’t go through it she would have never received what she needed and been worse off. How can parents get what is needed for their children without losing time? What we do know is that she flourished in this environment. Her academics skills also grew, she learned to spell, read, and do simple math. Her computer skills helped her to learn leisure and academic skills that she continues to use today. The staff that worked with her were incredibly dedicated to her success.

Austin was also successful in this placement. His vocal language remained limited, but he progressed using PECS and we learned that he was able to spell beyond his age, this skill helped him in so many ways to get his needs met. When Austin would want something he would hand the person with him a pen and paper, then he would spell the item he wanted, such as j-u-I-c-e. It would take many years before he would learn how to turn these letters into words, but for now he was at least able to get his needs met, and reduce his frustration. He eventually got a Dynamyte, augmentative device, and took to this beautifully, as he seems to be drawn to most techno gadgets and easily figures them out on his own. Austin has always resisted help and instead learns to navigate computer programs and other devices on his own, quite fascinating to watch.

Alanna and Austin spent many years at this placement, however each took a different path as they aged out. From 9 to 12 Alanna was fully included in a small private school for typical children with her own aide. In the beginning she was able to keep up in some areas as the other 2nd graders, learning states and their capitals, she was a whiz, and spelling was always her strong suit. Having these skills made it possible for her peers to see her strengths. The students in this class could not have been a more perfect match for Alanna. To this day, one student continues to keep in contact with Alanna. Her peers would insist that she play with them, they would engage her and help her. One student taught her to do a cartwheel. This may not seem important in the large scheme of things, but the social interactions that they encouraged and helped her through continue to have a positive effect on her today. By the time she reached 4th & 5th grade the modifications necessary to the curriculum were becoming too extensive and the value of what she was learning came into question. We had to make the decision to move her to a new placement — we were very lucky that one of her aides followed her to this new place, and made the transition quite easy. However, not being a school that specialized in autism, this was not the most appropriate placement. Finally, by the time she turned 14 and opening came available at her original placement associated with the Outreach Program she was at before age 9. Alanna was back where she belonged. Now, what do we do with Austin.

Austin also stayed at this placement until September of the year he turned 9, however the path following that time was much different than his sister. Everyone agreed, including the staff, that he had outgrown his current placement, but the alternatives were limited. Although the same private school allowed us to try out the placement for him, the environment and support staff were just not the same caliber that Alanna had and our expectation of his success was unrealistic. By May it was clear that this would not work, and Austin needed a placement. There were no openings back at his placement in the outreach program, and at this time the district was starting a collaboration with a high profiled consultant, and they offered to bring him into one of their programs. Within ten days, the district and their consultant had kicked Austin out of school, and placed him on home instruction. And yes to all that will ask, we knew our rights, and what should have been done, but why on earth would I force them to keep my child, especially when it was obvious that they could not help him and did not have the expertise they had claimed, but instead this was the beginning of the darkest time of our life.

Behavioral struggles, the ride from hell, this is the one with the shortest line. I can’t say that only the brave get in line, but instead only the necessary, no one would voluntarily take this ride. The distance between those that get on this ride is so wide that it is impossible to get eye contact or converse with the others to find out their expectations, their background, anything that would help in understanding the process of what is about to happen. Besides the anxiety about how long this ride will take is far more worrisome. Once at the top of this ride there were more choices. There are multiple ride operators, each trying to convince us to get on at the entrance that they are manning. The many different times that we had to ride this ride before we got on at the right entrance would take too long to describe and would fill a book. It took nine months, before we finally made the right decision, and with the help of Kennedy Krieger Institute and the most highly qualified professionals that we have ever encountered, we finished this ride with the utmost confidence that Austin was going to be just fine.

However, because we went on the Behavioral Struggles ride, our school district refused to accept us back. What? Austin finished his time at Kennedy Krieger and he was a success story. Kennedy Krieger was willing to offer training and support for 2 years following his exit, yet our district was refusing to provide a program, and instead insisted that we place our son in a residential facility. How can a district make this decision with no input from those that have worked with him for the last 5 months? All at Kennedy Krieger knew Austin was going to do great once back home, we all worked so hard to bring him home. There is no way we will pack our sons bags again, we just did that for almost 5 months, and now he is home, and he’s going to stay home, end of story. Okay, not really the end, actually the beginning of — you guessed it — our 3rd time through the Due Process Cave.

This time through was a bit different; this time we had a miner’s hat on, a hard hat with a light, so we could see our way through the cave. Alanna was in a good program, and Austin was receiving services at home from staff we hired, but the judge ordered the district pay. This time we stayed in this cave for 3 years, yes that’s what I said, years. The individual successes of Austin during this time were tremendous, having such a qualified staff day in and day out was incredible. Having it everyday in our home was overwhelming. And again, if anyone had told me I would have to endure this ride for 3 years I would have baled out right at the beginning, sometimes ignorance is bliss. 3 years later, we won, and the district was ordered to provide an appropriate program for our son, 1 year following the judge’s decision, Austin is in the same school as his sister. The day of his intake, and the acceptance of Austin into this program, was like coming home after years away from your family. The feeling of comfort is indescribable, when your child is in a place where you trust the professionals, and you know he or she will be cared for is priceless.

Just when you think you have done all there is to do, and you are completely exhausted, just looking forward to that long ride home where everyone is quiet from fatigue. The hard part is all over and you head for the exit gate. Only here at The Autism Theme Park there is a twist, girls and boys must exit through different gates. As you pass through the turnstile you think you are headed for your car, but first you must get through the Puberty Funhouse. Alanna made it through fairly easily, just a small delay in the room of mirrors, as she kept repeating the same mistakes over and over and couldn’t understand quite what was happening, but soon she was able to handle it, and exited with the skills necessary to independently care for herself.

Austin however made his way to the room filled with spinning visual illusions and strobe lights, and soon we discovered he has seizures. Medications would be needed and consistent trips for blood work were inevitable to ensure his safety and health. We’ve learned that stressful times can bring out seizure activity, and of course for someone with limited language and a low threshold for frustration, stress is unavoidable. Now we must learn how to balance challenging him, yet keeping his protected from high levels of stress.

Our family has made several trips to the Autism Theme Park, and for the most part we have enjoyed our time. We all have learned new things about each other and ourselves. Billy and I handle challenges well as a team. Chelsea is truly Alanna and Austin’s best supporter. Alanna has her obsessive traits and generally wants to stay on the same ride, but once she tries the new one, she learns quickly to incorporate it into her life. Austin requires details of what is about to happen, and people he trusts must accompany him, or he’s not budging. The most difficult time in the Park is usually dealing with the ride operators. We have trouble getting on and off rides and choosing how we want to enjoy the ride, instead the ride operators what to insist that we move along with their choices and attempt to cattle prod all of us through the same direction. The rules posted at the entrance to this park state that each participant can go at their own pace, but someone forgot to inform the operators, so we must constantly remind them.

The Autism Theme Park is a unique theme park — although scary, it can also be quite rewarding. There are no real directions upon entry, but once inside you just have to keep looking to find the right answers, almost like a scavenger hunt. This is not a park you can attend without being educated, you must research all that you can to make sure the decisions you make and the ride you get on won’t make you ill. Be careful of the carnival people offering dangerous advice. Seek out those that have done this before, but remember their story may not be the same as yours and therefore their experience may not help, and in the end you must make your own decisions about which rides to get on, and which are the right fit for your child. Come back often, we here they are constantly adding new rides, and soon to come is the over 21 section, guaranteed to include a labyrinth maze called Find Your Future.

Posted in Uncategorized | Leave a comment

Hello

Welcome to my blog. Please check out our links above.

Posted in Uncategorized | Leave a comment