Back in our last post, we shared the pre-holiday status that described the continued efforts of an extraordinary team, to the commitment of the success Nicky has already had in his first year. Since then, the holidays have come and gone and we are turning our sights to 2014. Since just before Christmas, Nicky has had a rough time – unsure of the cause, as always, the medical and clinical teams are working hard to figure it out. Often, it remains a mystery and things just adjust themselves. Sometimes, we say things like “the holidays are tough because the environment, the energy, the routines – everything changes and can be very overwhelming.” True, but this reasoning can cause us to overlook a critical medical issue or dismiss the possibility that there is another stressor. So we are all looking at those things that constitute our individual competencies; doctors, psychologist, clinicians, parents – we continue to add all theories to the list and explore each one.
This is a tough time as a parent. We want immediate relief for Nicky from whatever is causing his aggression, anxieties and increased ritualistic habits. We want someone to figure this out, and our patience runs thin. Little things start to become big things, and without meaning to we become impatient and accusatory. So we are working very hard at staying distant as the team does their thing – except to see how he is doing a few times a week, by texting his Shared Living provider or the medical coordinator. We are offering up our time to run errands for meds or groceries, of course provide immediate fixes to any property that is damaged (not infrequent), and keeping up with reports online (as a team, we use an online collaboration tool). We are hyper-aware at times like these that we need to maintain the formal methods of communication and not cross lines. That said, as equal team members we have also provided our input and spoken up when we feel very strongly – something that we have always felt welcome to do, but still practice self-control over. Remember, we are not the ones taking care of Nicky every day. Our role is now supporter instead of recipient of support.
One other marked difference in our new situation; our worries are actually increased to some extent, with regard to Nicky’s caregivers. In the school system, it’s very distressing when a favorite or very successful teacher or aide leaves. Imagine how much more frightening if Nicky’s caregivers – in particular his housemate and primary caregiver – decide to leave. Finding a replacement, someone who will make this level of commitment – to live with a challenging, severely impacted and very powerful young man – could take a very long time. And in the meantime, as we saw during the housemate’s 6 week absence in the fall, Nicky’s entire world is turned upside down. To compound everything, he cannot come home – even temporarily. We can’t handle him. It’s part of the “great sadness” of the autism reality we live in.
So during times like now, when our son is troubled and causing a lot of damage to himself and others, as well as to his environment, we are equally if not more concerned about the sustainability of the direct caregivers. Their health, their strength, their resolve – all of it comes into question for us, and this is the one time when we definitely reign over anyone else on the team; not one single person knows better than we do what it is like to endure this level of challenge.
Which, you see, is why the term “hyper-aware” or “hyper-vigilant” about our own responses to how things are going is so critical. We don’t need to add to the problem. We need to advocate with care, with love, with understanding, and with patience.
2014 is a big year for Nicky – he turns 22 in November. Here in Massachusetts, turning 22 is the moment that our children are released by the school system and enter into the adult service world. Often (unfortunately), this is referred to by families as the “giant cliff,” off of which our children plunge into the unknown, unprepared, unsupported. On March 18th at 7:00pm at Auburn High School, we are going to present our journey once again; “22 at 20: a Non-Traditional Transition Story.” We have done the presentation in the past but this time we will dive a little deeper into the legal process as well as some of these more emotional and operational processes that we’ve learned are keys to the success. Despite the recent developments, we continue to shout out “we are not afraid of 22!” Hopefully others will learn to say the same.