Autism Trials, Therapies and Other Rejoicings

 Today’s 2008 Kingsbury Journal “flashback” is rather long, so I am going to keep this introduction short and sweet… I just want to say that regardless of how long we have been married –or if we even are!—adversity, trials, sorrows, trouble or what some call plain “bad luck” (which I don’t believe in J) seem to worm their way into our lives. And why is this? I found a beautiful quote that illustrate some of the reasons:

          We face trials so we can learn whatever lessons we must, be it patience, charity, hope, love, endurance, or faith...

In the journal entry that follows, I mention two very dear people, who know something about adversity. They are beautiful angels who helped me, Ben and my family at a difficult time: Mary and Pam. These days, those two dear young ladies are respectively battling liver cancer and raising a little daughter with severe congenital health issues. Both are warriors. Both are living gloriously.

Whether it’s autism affecting your life, or something else, we all have our battles! Rock on! 

                                                                                    The Diagnosis

October 1998

         So here we were, October 29, 1998. D day was finally there: the diagnosis was going to fall. I felt a bit light headed as Keith and I sat in the empty waiting room. The first magazine I picked up talked about “pervasive development disorder”, hummmm, could that be? I recoiled in horror as I read more: “What? They have coined a new term for my nemesis, it is just plain old autism”. And so minutes before we were ushered into Dr. Senft’s office, I already knew: “My three year and five month old little boy officially has autism”.

What did it change? Nothing really. He had “it” before. It was just that my conscience of it had somehow affected my reality. Keith and I didn’t even cry. I don’t think we even hugged or comforted each other, maybe there was a bit of denial going on there? Who can tell? It was a long time ago...

Pervasive Development Disorder is thought to be a more descriptive term than “autism”; “pervasive” means that delays are wide-spread and have affected all areas of development, cognitive, social, mental as well as physical such as gross and fine motor skills. Neurologists, psychologists, psychiatrists and all mental and behavior health professionals refer to autism as being a “spectrum” these days, which means no two children are exactly affected the same way by this disorder and will fall somewhere on the spectrum or bell curve. I have even heard some health care providers refer to PDD-NOS as one distinct category on the Autism Spectrum. It can be very confusing for the newly diagnosed family.

Thankfully as members of the church we have the guidance of the Holy Ghost, and regardless of what “they” call our children we have to keep in mind that it is for their good that they are so “labeled”; so they can receive the services best suited to their condition, or as close to as possible. With the guidance of the Spirit we can know if something is right or wrong for the treatment of our children. That is what Keith and I clung to as we felt “tempest tossed”, with prayer and the Spirit, we would be alright.

The day after we received the diagnosis, Jennifer having informed the rest of her Relief Society presidency, the president and her first counselor both came to visit me at home. What an awkward visit that was! It had been as though someone had died... And maybe in a way the idea of Ben as a typical little boy had indeed died, but I had known for months, at least a whole year, if not more, that there was something different about him, so this diagnosis didn’t change anything about our situation.

I think people around families having just heard that their child has autism don’t know what to say or how to act, they think the world has come to an end for the family affected. It isn’t so! For us, it meant that it wasn’t my fault Ben was the way he was. I wasn’t a bad mom and it wasn’t due to something I was or wasn’t doing! Yes, autism might be with him all his earthly days but we could help him break out of his shell and be a happier person now that Dr. Senft was on our side. With God’s help we would succeed.

          So we could now move forward and get Ben more therapy and he could progress more. With this diagnosis we could move past the once a week in-home half hour occupational therapy and hit or miss speech sessions. We could actually get Dr. Senft to prescribe outpatient sessions at Good Shepherd Hospital so Ben could learn all he can while his brain was still “plastic” as she had said, meaning while he could still learn as much as possible!

With a diagnosis of PDD-NOS, Pervasive Development Disorder Not Otherwise Specified, Ben was eligible for weekly outpatient sessions of speech and occupational therapy. Dr. Senft also wanted to rule out a seizure disorder: Ben’s crying spells at 2 a. m. and his staring at school and home when he watched TV were bothersome to her. I just always thought he was spacing out. But he needed an EEG to check his brain activity. “I have so much to schedule but this is good, we are getting him all the help he can get so he can catch up, right? He will catch up?”

End of 1998, a ribbon of fear curls around my throat as I busy myself , calling to make the arrangements for the EEG and the therapies, what if Ben never makes up for the lost time? A diagnosis of autism is a lifetime diagnosis... He will always have autism, all we can hope for is for him to get better and better, so much so that one day maybe his disability will almost be invisible. And for now that day is still so far away, we have so much work to accomplish... Ben is three and a half already and we barely got him diagnosed, his speech delay is so severe that we don’t know if he’ll ever be able to talk at this point. We need a miracle.

But I have faith. Heavenly Father didn’t send us this child to fail him. We will get him all the help we can get him and we will help him achieve all that he can and fulfill the measure of his creation, whatever that is for him. My favorite scripture, 1 Nephi 3:7, carried me: ‘...I  will go and do the things which the Lord hath commanded me, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them to accomplish the thing he commanded them.”

Those days were very trying though. I learned that I couldn’t get the additional in-home therapy that we needed until we applied for medical assistance. My pride stung. No, we weren’t well off. But we had enough money for our needs. By then Keith made sufficiently to care for our family and carried enough health insurance coverage. Our “destitute” days were over. But if we were to care for Ben the way we needed to and to pay for it out of pocket, we would certainly get right back to square one. And that is why the Lord had sent us to Pennsylvania, the only state in the Union to care for their disabled children in this manner: without ever asking for as much as a pay stub from Keith, Ben was enrolled in medical assistance and was able to receive in-home therapy.

Keith and I also began a very long journey through the cycle of grief. As I mentioned before, we had to relinquish the idea of a typically developing little boy... It had been somewhat obvious through the baby and toddler years and after the diagnosis, obviously, we were made more than aware that the road ahead would be long and rocky for us. Shock and disbelief were short lived for me.

Anger didn’t last very long either because I knew that such a negative emotion would only slow me down and impede the programs I needed to put in place for my son.  Confusion and powerlessness however were emotions that threatened to swallow me whole; and depression was not far behind, never far behind. I had to work so hard to keep a positive outlook!

I started to collect uplifting quotes from General Conferences and copy them, posting them on my fridge and kitchen cabinets, everywhere I would see them all the time throughout the day. Anything to uplift me, to keep me going. Maybe a child had died after all... The idea of a “normal child”, one that would grow up to be a deacon, a teacher, a priest, an elder, who’d serve a mission, marry in the Temple... Now what would really happen? At that time I was too engulfed in the day to day drudgery to even remember that Heavenly Father had promised me this special child and so that I was qualified to take care of him.

After my depression let go of its strongest grip, guilt took its place, of course, such is the cycle of grief... I was ashamed of myself for having succumbed to being depressed, strong Latter-Day saints are not depressed, not when the gospel is a gospel of joy and peace. That is true, but sometimes we get depressed when trials and tribulations get heaped so high and tall that we cannot see the other side of the mountain.

I was in stormy uncharted waters and I prayed for deliverance from my depressed feelings all the while doing what I had to in order to help my children. The Lord heard my pleas. I had to stop feeling ashamed for having been depressed for a season; hope started to blossom as Ben started to do well with his in-home therapy. It was all worth it!

Applied Behavior Analysis

February 1999 to February 2004

Ben’s in-home therapy consisted of a very rigorous “discrete trial” and Applied Behavior Analysis combination. His TSS – Therapeutic Staff Support – and BSC – Behavioral Specialist Consultant– , Mary and Tanya were wonderful and came each and every day for four hours to work with Ben on repetitive tasks, asking him to: “Do this” and model a pattern he then had to repeat, either with gestures or with building blocks or repeating words.

At first I was dubious, but I was a convert when I saw how fast Ben complied and how much he seemed to enjoy it after the first week. What’s more, my whiny and wiggly little Ben sat for them and seemed to eagerly wait for the next set of instructions!

Applied Behavior Analysis was developed by researchers who observed children with autism respond very favorably to these techniques. I have to say that our son benefited greatly from ABA which teaches skills, which children normally pick up from their environment without formal teaching, one small step at a time.

For example, not in any particular order, how to greet people, eat with a fork, put on and take off socks or a shirt, zip up a coat; things like that. Discrete trial is the primary teaching method of ABA designed to increase attention span, which was very limited for Ben. It also rewarded him with lots of cheering and social praise and the few occasional fruit snacks or M & M’s! With its simple concrete and explicit instructions, Ben was able to succeed with discrete trial, it was wonderful to see him blossom. It was a prayer answered for us.

                                 Mary working with all the kids, mine and also Jennifer's who had come to visit :)

I would love of course to say it was smooth sailing from then on but of course we still were in stormy waters. Ben’s EEG came back abnormal, showing signs of seizure activity. So Dr. Senft prescribed Tegretol to control the staring spells. And she also recommended we take Ben for an MRI to rule out any physical brain problems that could cause the seizures. Within two weeks those disappeared as well as the 2 a. m. crying spells, thanks to the Tegretol...

What a glorious night that was, I woke up anyway of course, thinking something was amiss, my body was used to waking like clock work; but all was silent, Ben asleep looking like an angel peaceful in his bed... I thought I should wake him just to make sure he was alright, but here he was resting through the night for the first time in his life, possibly... Another miracle from a very merciful Father in Heaven.

What Keith and I figured out was that Ben would probably have petit mal seizures during the night, which would cause him to wake up with a splitting headache, and would make it really hard for him to fall back to sleep. I felt so badly for my little guy, suffering for so long without any words to tell me that he was in pain. But his seizures were the invisible kind, the sort that you aren’t aware of, unless you really know what you are looking for. How was I to know? I can see it now, in the pictures, he has big purples circles under his eyes; poor little boy, so young yet so sick.

We scheduled the MRI thinking nothing could possibly go wrong when Heavenly Father was blessing us. Well, don’t count your chicken before they hatch. And don’t think that Heavenly Father is ever finished refining you, because until you draw your last breath you aren’t finished having to endure. The MRI showed a cyst on Ben’s cerebellum, right smack in the middle of his brain. My world collapsed around me yet again. What did it all mean? Did that cause the seizures? Did it cause the autism? So many questions came rushing through my mind, and threatened to engulf me. I had to breathe and rely on the Lord not on arms of flesh, even if those arms had gone to countless years of medical school.

It might sound callous but in the years of dealing with very wonderful and not so wonderful doctors I have learned that nothing replaces prayer and the guidance from the Holy Ghost in dealing with my son’s condition, and vice versa of course. I would never dream of course of going without medical treatment because I have my faith and the Holy Ghost.

So I prayed that all would be alright even with Ben having this additional hurdle of a cyst on his brain. We went to Children’s Hospital of Philadelphia to consult with a pediatric surgeon who had the bedside manner of a country veterinarian –some of which possibly have better people skills after all!  And it turned out that the cyst was water filled and benign. The doctor also was of the opinion that the cyst had nothing to do with his developmental delays.

All to show that prayer works and strengthens our testimonies that Father loves us and is mindful of us in our hours of need. Alma 62:51 says: “ And they did pray unto the Lord their God continually, insomuch that the Lord blessed them, according to his word, so that they did wax strong and prosper in the land.”  The Lord had indeed blessed us so much and I wanted so much for Ben to now prosper.

Ben continued with ABA at home and speech and occupational therapy at Good Shepherd. It was a long process but looking back on it now it seemed to happen miraculously. My non-verbal Bambi seemed to emerge from his own little world, day after day, at the hands of very patient therapists. Mary stayed with us for nine months then Amy for eighteen months and finally Pam for two years. 

Playing with Joey, Camie and Lixie!

                                                           Reading a book with Mary and Amy!

Those girls were our favorites and became part of our family for all the time they spent with us. We went to Amy’s wedding and Camie was even her flower girl after Amy wasn’t Ben’s therapist anymore. 

We also attended Pam’s wedding in the Poconos and saw her become Mrs. Klaus. What joy!!

I cannot express my gratitude for what they did for Ben. Being outside our family they had some influence over him that we didn’t; it is interesting how, as I mentioned before, he is better for other people, eager to behave, happy to please. He repeated words for them by rote at first, then more and more spontaneously. We had quite a problem with echolalia in the beginning, where he would just repeat what he had last heard you say, which meant he had no concept of the meaning of what was said.

As I mentioned, Pam stayed with us for two years, she became family! She worked tirelessly with him. It helped that he was compliant with her and, except for when he grew tired and wouldn’t understand what was asked of him, he would try his best and looked so cute. And I think he wanted to impress her!

 It was still hard at home though, to have so many “strange” people come and go. At times I felt that my little house on Bridge Street had become Grand Central Station. The TSS sometimes had students “trailing” them: The agency loved to send new employees to see their therapists work with Ben because he was a good little client that wouldn’t turn off a new employee about to start work for them, as opposed to a defiant one who would scare them off into finding different new employment... Then we also had to have the BSC come and evaluate the TSS’s work to make sure all was on track. So many faces in the house, so many cars in front of the house...

I felt we had no privacy. My girls were still young thankfully and they loved having a little time at the end of each session with the TSS to talk about girly stuff or do nails or go to the park. I have to say though, that towards the end, they were more than ready to reclaim their home and privacy. We started ABA and TSS sessions in February 1999 and ended in February 2004 and for 5 years we gave up on a lot of after school activities for the girls so we could do this for Ben.

Was it worth it, would I do it again? A resounding yes! It wasn’t easy but I credit ABA for Ben’s increased attention span and especially for his verbal ability. The TSS were able to include his sisters in some of the activities when they were younger and teach him games and turn taking, use Angelique’s babbling and then emerging vocabulary to Ben’s advantage, teach me techniques for rewarding him appropriately and countless other things.

Another perk for having another adult in the house when my kids were young was that I had someone to talk to when things were less than ideal. Say things were rough with Ben in the morning, I knew that soon the therapist would come over and I could ask her what she thought about what he was doing, she could share what she was learning at her training sessions and last but not least she was a friend... Those girls truly became good friends. They were angels sent by a merciful Father who knew Keith and I couldn’t do it on our own, being in Pennsylvania away from our families.

I remember for example, one morning I had gone grocery shopping and bought a gallon of whole milk. Ben was about four years old at the time. He started drinking some milk from the new bottle and by the time his therapist, Amy, arrived about an hour later, half the gallon was gone. He had kept asking for more and more and more, behaving more and more like a drunken man.

I was very concerned and told Amy about the phenomenon, she replied that she had read about milk allergies being very common in kids with autism and that maybe I should look into it. Sometimes we love and crave what isn’t good for us, creating sort of a vicious cycle for ourselves. It sounded true for Ben, he had refused all other foods for lunch that day and behaved as I said “like a drunk”, it was very scary to watch!

If I wanted Ben to truly “prosper” and be healthier, I really needed to watch his diet, so I stopped giving him regular milk and introduced soy milk, holding my breath. My little guy is very picky. Who knows how he would react, would he hurl the cup right back at me? (Okay he’s never done that, but you never know, he had thrown enough toys at us!) He took a sip, hummmm, not bad, another, not bad at all, he drank the whole thing! Not a peep. I was so relieved! I asked, “Do you like it?” He nodded, yes. Oh, another victory! Thank you, Heavenly Father!

It’s been eight years and we haven’t given him regular milk since, except for the occasional cup when we’re all out or when we’re out of town, but even now he’ll tell us “This isn’t MY milk!!” very indignantly! I think he knows he feels better when he doesn’t drink lactose.

Autistic kids have been known to be very lactose intolerant and some are gluten intolerant as well. We tried that diet as well with Ben. But it didn’t seem to make a difference in his speech or behavior so we let it go and gave him back his beloved Cheerios as it is one of the few foods he likes.

It is very difficult to have a child with a diet so restricted in the first place and then find out they have to be placed on a special diet as well. For Ben it is just the milk, thankfully. If for your child you have to make even more adjustments, take heart and think of the children of Israel eating manna in the desert for forty years. They made it because the Lord was with them, the Lord will be with you as well as you take the best care of your child.

Ben started Kindergarten being not quite verbal yet – he only could say a few words-- and not potty trained, so he was placed in a special education class for autistic children in the Bethlehem area school district. What is interesting to note is that this school district entirely outsources its special education services for the autistic population from the Colonial Intermediate Unit #20 which we had dealt with for special education preschool since Ben was two and a half.

Ben had already attended two years of special ed preschool at Marvine Elementary and I felt he was ready for Kindergarten even if not at the same level of readiness as the other Kindergartners, he was as ready as he would get. His teacher was wonderful but his school was very far away, in Bath, and unfortunately they had to close down the classroom when the teacher went on maternity leave. What a horrible blow for all those autistic kids who thrive on routine...

Ben was then sent to another school where he stayed for the remainder of the year and another year, at which time they sent him to yet another school because they closed that classroom yet again! What I am getting at is how do you justify this type of policy when you are dealing with kids diagnosed with autism?

Routine is a big reassurance that all things are well for children on the spectrum, why take that away from them? Ben thrives on schedules, he loves calendars and likes to check things off on a list. Switching him from classroom to classroom wasn’t the greatest thing in his education and I wish I had made more of a fuss, but what could that have changed? Administrators do what they will anyway. At this time we might face another classroom closure this year. I am just sick thinking about it.

But this is what I have to say, despite all the turmoil, Ben continued to grow and progress in his own sphere: his speech became clearer and clearer, from Kindergarten –two years of it– to second Grade. His vocabulary grew so much and his comprehension really was magnified by all the efforts made in speech therapy and at home. I will always remember Ben’s first joke: Camie sat on a little ball of Silly Putty on the couch –not something I would have laughed about under normal circumstances– and when she went to get up a string of Putty linked her behind to the couch!

Ben exclaimed: “Look, Camie has a tail!”  I was floored, first of all that he had the words to express himself and second that he could see the humor in the situation, then third, he was right, it was really funny! We all burst laughing, we couldn’t believe it, our Ben was joking! What a great one! I think he was seven when that happened, it was such a great day for us, a small miracle but such a cherished one.

Another dear miracle is the day Ben finally responded to my endless “I love you”’s . It didn’t come with thunder and lightning of course. But he said it , “I love you Mommy” and my heart was finally satisfied that I wouldn’t die without hearing it! It had been so hard to see my son go through his toddler years without any way to communicate his most basic needs, now he could finally tell us what he needed and also express love!!... What a relief, and what abundance of joy!

It had taken countless hours of hard work on our part with the skilled help of dedicated professionals. We had been told that if Ben didn’t speak by the time he was five years old, he would probably never speak, so we really had pulled up all stops that year and here we were two years later... I finally had heard my son tell me he loved me. Yes, again it was thanks to all the therapy but also it was because it was Heavenly Father’s will for Ben that he shouldn’t go through his mortal estate without any verbal ability. And I was so thankful for that.

It reminds me of the scripture in Ether 12:27: “And if men come unto me I will show unto them their weakness. I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me; for if they humble themselves before me, and have faith in me, then will I make weak things become strong unto them.” I wonder if it will surprise Ben one day that he couldn’t really speak for himself until he was seven years old. He is going to be thirteen this year and he sure can express his opinion, whether we want to hear it or not. He sometimes still has improper speech or sentences borrowed from movies that he’ll use to answer questions but he understands what we tell him and can communicate well.