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 hear 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.