McCarra-Fitzpatrick Family

    Our son Aidan was born on 5^th June 2000, a millennial baby.  The pregnancy, my first, at age 33,  progressed normally, and I worked up until two days before my due date.  Labor and delivery went smoothly; I did have an epidural for pain relief, and I recall asking the doctor what Aidan’s Apgar score was and being told that it was nine.

I remember, so clearly, when I went to the nursery, and the nurse was holding him, and he was crying, loudly, but as soon as I took him into my arms he quieted right down and I knew that, in some very basic and visceral manner, he knew me and was connected to me.  I filled his baby book with all the bits and pieces of information about him, what gifts he received from relatives and friends, pasting in the birth announcement and the invitation to his christening.  I was Aidan’s primary caretaker; my husband was, at that time, working in a Manhattan hotel (audio-visual services for conferences/meetings) so his schedule was often irregular, with very early mornings and very late evenings.  We had decided that I would stay at home with Aidan until he was old enough to attend school.

Aidan and I stuck close to home, walking to our local park, and, on the weekend, visiting with Mark’s parents in Manhattan, avoiding bringing him to places, such as malls and churches, that would have large groups of people, since he was so little and we did not want to expose him to anyone who might be ill.  He wasn’t put into daycare or left with a babysitter.

I recall, vividly, when doing one of his nighttime feedings, that our eyes locked and he was gazing steadily at me.  His appetite was good and he thrived, and, as a matter of course, we brought him for his well-visits to our local paediatrician, who we had met with prior to Aidan’s being born.  There was never any concern about his weight or any of his measurements, and he seemed to be progressing, happy and healthy, in those months leading up to his first birthday.  His paediatrician did not, at any time, note that his behavior diverged from that of any other typically developing child, nor did his Grandparents or Aunt and Uncle note anything amiss in him.

While I realize it is a controversial subject, I do believe my son suffered an adverse reaction to the vaccines administered to him just before his first birthday.  The last time I remember him showing connectedness to us was on a trip we took to Bar Harbor, Maine.  We had rented a small cottage around which were scattered picnic tables.  The playpen Aidan was in had been placed next to one of the windows, so that he could see us sitting, outside, a small distance away.  I remember his crying in distress when he realized that we were separated, so I returned to the cottage to hold him.  The time would shortly come when he would no longer seek me out for comfort.

I remember that he had a high fever, his eyes were glassy, and he simply stared.  He recovered, but was never the same after that fever.  His head and hair, when he napped, would become soaked with sweat, in spite of the fact that the temperature of the room was not that warm at all.  Upon waking, he would be cranky and fractious, which he had never been before.  He stopped making eye contact with me.  He started focusing in on the television and, more than once, I found him standing and staring at a wall.  His babbling, which had approximated the patterns and cadences of speech, stopped.  At age two years, two months he was diagnosed as autistic at the WIHD (Westchester Institute for Human Development) and it was determined that he should enter into the Early Intervention program of New York State.  For awhile, we had an occupational therapist, ABA therapist, ABA aide, and a Speech Therapist coming to the apartment, but, within six months or so, we decided that Aidan might progress further if he were to attend a school.

So, he went to the Fred S. Keller School in Yonkers, New York, from age 2 ½ to age 5.  During this time the ABA therapists and Speech Therapists were able, with the use of reinforcers, to elicit single words:  “cookie”, “water”, and “up” –but, despite our efforts at home, these did not “carry over” and become part of functional language.  Toileting was also an issue, and we did several “one-day intensives” to try to help him to understand the toileting process.  At this time, given reports we had read about the success (for some) with gluten and milk-free diets, we started this with Aidan.  I am sorry to say, unfortunately, it did not have a beneficial effect, as far as we could observe.  We also tried the SCD (Specific Carbohydrate Diet), as well as supplementation with vitamins and Omega 3 fish oils.  We also attempted a chelation protocol using TD-DMPS, all without any visible improvement.

He has now had twelve years of speech therapy, twelve years of occupational therapy, twelve years of ABA in special schools, twelve years of schedules for toileting……and he has not shown any appreciable improvement.  We are grateful, though, for small improvements, such as using cutlery instead of his fingers when eating, or coming to us to be changed, rather than taking off his diaper, which have happened in this past year.

One of the most painful things was that he did not want me, when he was distressed, to comfort him.  The connection I had once felt was no more.  I desperately wanted to help him, yet felt helpless to do so.

We wondered whether he was affected by some genetic condition, but the testing we had done revealed nothing of a genetic nature, like Fragile X, for instance.

We considered whether his lack of language might stem from seizures that we could not perceive, that were, perhaps, happening as he slept, but a 48 hour EEG at Montefiore ruled that possibility out.

Another issue were his bowel movements, which were now consistently loose, which, I think, frustrated our attempts to successfully achieve toilet training.  We again, tried diet—additional fiber—and probiotics –to address this, but nothing helped.  The paediatric gastroenterologist we consulted with was not much help, essentially saying to us, “well, some autistic children have this problem, maybe he’ll grow out of it.”

I recall, when Aidan lost his first tooth, how upset he became, and I sat with him for a weekend on our bed, perhaps longer, as he wailed and cried, as I tried, in vain, to comfort him.  He couldn’t understand that it was a baby tooth, and that, in time, he would have a permanent tooth grow into that space.  All he knew was that it felt different when he ate and drank, and it was very disconcerting for him.  Thankfully, the loss of subsequent teeth did not produce such distress.

In the meantime, I’d had my second son, Conor, who is completely typical and has not been diagnosed with any developmental disorder.  With Conor, and Brendan, his younger brother, we spaced out the shots, never allowing more than one per office visit and always several weeks apart so that we could watch for adverse reactions.  In Conor’s case we were able to separate the MMR and have it given in single shots—unfortunately, this is no longer an option.  So, Aidan and Conor shared a room, and, as Aidan grew, so did his sleep disturbances, waking at 2 or 3 in the morning, jumping from his bed to the floor, or from the dresser or windowsills to the floor, shouting and yelling (but not in distress).  None of us in the household, of course, could sleep while he was awake.  In short course, thankfully, I came across melatonin, and a small dose, mixed into applesauce, about an hour before bed, enabled us all to sleep again.

For a long period of time, Aidan seemed to have an oral fixation, chewing on anything…..clothing, books, toys.  Frequently, I would find the neck of his shirt or the cuffs of his shirt damp with chewing (and holes worn into the piece of clothing itself).

After Keller came the Hawthorne Country Day School, where Aidan attended school from age 5 until his was 14.  After aging out of Early Intervention, we had to deal with the Mount Vernon City School District, who, at one point, wished to implement an initiative to move all special needs students in out-of-district schools from their current placements back to neighborhood schools—which would have been a disaster for Aidan.  I had already visited both their “autism” programs and neither had sufficient protocols in place to keep him physically safe.

When we ventured out to parks, or out into the neighborhood, someone had to hold Aidan’s hand, or else stay very near to him, or else he would bolt away.  He loves swings and, especially when he was younger, wanted to be in constant movement.  We got him a trampoline, and that helped address some of his need for movement.

While we felt fortunate that Aidan was able to stay at Hawthorne (he was never forced into a neighborhood school) the meetings we had with them, while not rancorous (until the very end) there were those who would routinely question his need, for example, one-on-one speech therapy rather than speech therapy given in a group session.  Securing evaluations from qualified personnel was like pulling hen’s teeth.  Typically, they would drag their feet and delay having evaluations done for as long as possible, and, when we finally got an evaluation, we would find it had been done by someone not qualified to provide one and that the evaluation would contain no useful or substantive information.  The years passed and I amassed and stored an ever larger collection of file folders holding evaluations, IEPs, and progress reports.

As Aidan grew older, and stronger, so did the extremity of his tantrumming and self-injurious behaviors.  He pulled my hair, chewed on his clothing until holes were worn in them, and, on occasion, would attempt to bite himself or others.  While we had resisted, for many years, giving him any medication, we enrolled him in a study of Abilify being done by the Seaver Autism Center.  One benefit of the study was that they would provide evaluations, done by qualified persons, the sort that the Mount Vernon School District was neither willing nor able to provide.  The Abilify, for Aidan, was seen to have a beneficial effect, and he has been on it since that time.  He also takes, in addition to the Abilify, Intuniv and Lorazepam, the former to help reduce stimming and the latter to reduce agitation.

In 2009 we had our third son, Brendan, who is developing typically and has no developmental disability whatsover, and, in 2011, finally left Mount Vernon and settled in Peekskill, New York.  In 2012, as Aidan entered puberty, his behavior took a turn for the worse, and he started smashing household items (mirrors, china, glasses, plates, framed photographs), tipping over furniture, and throwing or pushing items out the second story windows (televisions, toys, air conditioners, bedding,  pieces of furniture).  His medication was adjusted after consultation with his paediatric neurologist at Mount Sinai.

While the move to Peekskill had many positive aspects—more space, a large park adjacent to the house, with hiking trails—there were also additional challenges—mainly preventing Aidan from leaving the house without our knowledge.  While this happened, more than once (before we had alarms put on the front and back doors) thankfully, we found him, in all these cases, within a short period of time, twice at a local playground and once at the house of a neighbor.

Whenever he visits at home, now, we must be constantly vigilant, as regards where he is and what he is doing.  He still suffers from very loose bowel movements and the age of 14 and is still in diapers.  If we are not careful he will strip off and then the entire bedroom must be cleaned—walls, carpet, bedclothes, et cetera.  He is still non-verbal.  We have tried, consistently, to find some way for him to communicate with us, from picture systems to, most recently, a NovaChat (a tablet with icons to be tapped to indicate needs/wants), but, as per the last report, he is still resistant to utilizing it.

Another challenge we found, once in Peekskill, was that it was very difficult, if not impossible, to secure either Respite or Residential Habilitation aides.  Theoretically, as Aidan had qualified for the Medicaid Waiver, he had 20 hours of Respite services and 12 hours of Residential Habilitation services—a total of 32 hours of services, but it was rare that we could find anyone to do even two hours with him on a Saturday afternoon.  Typically, we would, along with a representative from one of the various agencies, meet with a prospective aide, who would, initially at least, show up on time and do the hours as agreed upon—but—all too soon, we would either start hearing excuses or they would simply not show up at all.  Therefore, the 32 hours of services for Aidan—that would have helped our family so much—were mainly theoretical in nature.

As Aidan grew older and stronger, and his tantrums more extreme, we started, albeit reluctantly, to consider the possibility of a residential school.  The thought of his living away from us had me in floods of tears, but I also had to consider whether Aidan would thrive in such an environment and, whether, in fact, it would be safer for him.  I also knew that our two younger boys, Conor and Brendan, were deeply frightened of Aidan’s tantrums and would see them scatter and hide whenever they occurred.

After twelve years of special schools, twelve years of ABA, twelve years of speech therapy, twelve years of occupational therapy…..no doctor or professional has been able to explain to me why Aidan has shown so little progress or why a child who was born normal is now only functioning at the level of a one or two year old.   I know that there are some who claim there is a genetic component to autism….but there is no family history, on either side, of anyone affected by such a disorder.  Or, for that matter, any neurological disorder.  All the studies I’ve participated in keep asking whether Aidan’s grandparents were affected by a developmental disorder.  Just ridiculous.

In August 2014 Aidan moved to a residential school, Devereux New York, in Red Hook, NY.  We were very grateful to the Peekskill City School District, who helped us with this process.  I still miss him horribly, though, even if it is for the best, which is, perhaps, selfish of me.  I miss his smile, and his great appetite, and those rare times when he would let me hug him.  I miss waiting for his bus and giving him a snack and getting him settled in the afternoon.   We see him frequently, as we visit, and he comes home for visits, and he remains, after all is said and done, still the baby who gazed up at me so steadily, long ago and far away.