Saying Farewell

It is with the utmost sadness that I have to inform anyone who reads my posts, as little as I write them, that my son passed away on August 9th 2015. He was only 37 years old. I am struggling to understand why. Nathaniel was severely autistic, as I have mentioned before. When he was 5-6 he started to develop very disturbing self-injurious behaviors such as pulling his hair out and biting his arm. At one point the local school recommended that he be institutionalized, something that both his mother and I did not want, but we did visit a facility about 45 minutes away from our home. That visit cemented our resolve to do anything to keep Nathaniel out of an institution. Since I am a scientist and worked for the National Institutes of Health, I knew some of the programs that were being conducted at the National Institute of Mental Health. I was able to find a doctor there that was investigating a new drug to control OCD in autistic children. So we signed up. There was a remarkable improvement in Nathaniel's behavior, and it was mentioned both to me and in the research paper that was published that Nathaniel did the best on the drug. Of course, that drug is used frequently now - Anafranil (generic -clomipramine). His quality of life was greatly improved and I would not for a second change my mind on using it. However, I do believe that the drug contributed to my son's death. The official cause of death was accidental water intoxication. This is sometimes seen with athletes who drink gallons of water after strenuous exercise. This of course made absolutely no sense since he is cared for 24 hours a day. His care provider says that Nathaniel had a good Saturday, drank his normal amount of coke, his favorite, said his prayers before going to bed (prayers he learned as a small child and repeats more as a compulsion than anything else since he will not go to bed, ever, without saying them to someone) and went to bed. However, Nathaniel always gets up about 10 minutes after going to bed, goes to the bathroom, slams the door, all very ritually. His care provider, while in bed, realized the he didn't do that, so she got up to check on him. He was unresponsive, lips blue, and lifeless. She got him on the floor, started CPR and called 911. Although she thought that she felt a heart beat, the EMTs were unable to get a response. Only the toxicology showed a case for water intoxication, and I have to say that the limited tox studies seemed to be geared to only confirm the diagnosis. So much more could have been checked. I know without a doubt that Nathaniel didn't drink gallons of water that day, so I looked for any condition that might mimic water intoxication and found one. An extremely rare side effect of the drug he was on can cause a condition known as "Syndrome of Inappropriate Antidiuretic Hormone Secretion" which causes an imbalance in electrolytes in the blood. With low sodium and low potassium, heart failure may ensue. I believe that this is what caused Nathaniel's death. Nathaniel received yearly physicals and yearly EKGs, and it is not likely that this condition would have turned up. Maybe if a blood testing had been performed very recently, a problem might have been seen, but Nathaniel showed no signs of distress at any time, but without any speech, he would not have been able to tell us specifically if he was having any problems. Anafranil gave Nathaniel many good years he would not have had and I do not blame the drug, or myself, for his passing. This of course does not make it any easier to lose my only child. I cry every night and say the prayer that Nathaniel always said to me when we were together. I miss him terribly. Read more!

Discretionary Trusts

Your best bet would obviously be to consult a lawyer. I don't know what the differences are in Canada. A discretionary trust is one that is put in the mane of an organization (Nathaniel has full time care now for essentially an assisted living program) or a trust fund of a bank. What makes this important for autistic adults that are in assisted living (and don't equate this to assisted living of a senior)is that the inheritance is protected from the state government.Here in the state of Maryland, should Nathaniel be unprotected by no trust, Maryland could go back to day one and take all of the inheritance money as payment for state services that are normally provided to everyone as an entitlement. This way the organization can use the money for special things like clothing or even toys (Nathaniel is low functioning). He is in a great program where his care provider of 12 years treats him like her own child. We are very blessed for this. Read more!

There is a good forum site at http://www.autismweb.com/forum/ They have a good selection of topics. Read more!

A recent comment made here has asked for specific questions. I don't have a forum set up for this site as I don't update it very often. I more prefer to use my Facebook page to keep in touch with fellow parents of autistic kids. Services are drastically different from state to state and it is difficult to respond specifically to many questions. Certainly planning for retirement and estate planning is important as the state can pretty much take everything if not protected in a discretionary trust.I would suggest to anyone to look at your states social services website and see if they offer residential services If you want to plan for your child after your gone (and if they have no siblings) this is the place to start. Read more!

Resources for Parents

I came across this useful site for parents that are looking for resources for their autistic children.

http://www.autismspeaks.org/family-services/resource-guide Read more!

Special Needs Trust

The article here is a good start for parents trying to plan a future for your autistic child. I couldn't stress more the comments on the need for a "Special Needs Trust." Use you knowledge wisely. Read more!

Life after grade school

I think that to read something like this can be very discouraging to parents of autistic kids, but it does remind us that our job as parents does not end with grade school. Getting support from any source can be the most comforting as others try to get you through the hard times. Read more!

Autism and Aspergers

I have always had a problem comparing Aspergers syndrome with autism. Call me old school. When Nathaniel was diagnosed with autism he displayed most of the characteristics (10 total at that time) that were associated with autism. Along came Aspergers and the concepts changed. A major developmental challenge became a minor one (by comparison and in my view, of course).

The Autism Support Network just posted a video of an "autistic" 17 your old girl that stretches the condition further and I can't resolve my difficulties with this. ). It is incredible to me that the girl was diagnosed with autism when she was 2, and in 1996. A "normal" child has not developed the social skills yet, let alone a child that might eventually be diagnosed with autism. And now her ability to communicate with people seems miles away from someone with autism. She does speak of some characteristics that we see in autistic children like noise (although I don't think that reacting to sudden noises is a condition as a good example. Nathaniel always had a problem with loud noise). And repetition of actions is more a stress reliever than anything else, according to psychiatrists.

I am happy that the girl has found her place in the world and has been able to cope with her condition. It's just that her symptoms don't fit in to the picture I have regarding the autistic condition. A I said, I myself have a hard time dealing with this. Read more!

When It Comes To Full Time Placement

Wow, another long time between posts. I must do better.

I have a friend that has come to the point where she can no longer care for her child. This is not a particularly old child and would not be considered as an adult. However, my friend is experiencing all the pain and frustration that any parent would when deciding to look for outside help in living arrangements. So she says that she has no idea where to start

My suggestion was to first call the local or state Autism Society. They can be very helpful in locating possible institutions capable of caring for the child on a long term and full time basis. I hesitate to use the work institution because it has a negative connotation. Many states have private non-profit organizations that they use for placement. My son is placed with a very good organization in Maryland and oversees many homes that care for adults, with full time supervision (live-ins) doing the cleaning, cooking, and in the case of my son, personnel care like showering.

I suggested to my friend that she must decide on whether she wants her child to be close enough to visit often or at a distance. This is a hard decision as there may be few local care facilities. Again, we were lucky with Nathaniel as there were two good organizations close by. We did have a choice on two long distance facilities (about 2 hours and 5 hours away}, but we did not want that distance and we were pleased with the care provided locally. She also needs to find out what that care will cost. Maryland provides for everything (thus it's hard to place an adult!), including a personal stipend for miscellaneous expenses like clothing and even airfare to visit us.

Finally, finding out who works for the organization is key to both your adult and for your own piece of mind. Shelley and I interviewed the care provider when we started - that's almost unheard of today and in most organizations. Still, meet with the care providers that are employed. This is your child and you want what is best for him/her.

It is a fact of life that this kind of decision is best made early in the adult's life. There will often be a waiting list and the sooner you are in the system, the better. This decision will not come easy Read more!

Our new health care bill

All parents of autistic children and adults should be extremely grateful to the new health care bill. The overhaul has made it possible for parents of autistic kids not to go broke trying to get the best treatments and care for them ("Health care law may help families with autism costs."). Quite different than in the 80's. Of course back then we didn't have treatment plans for our children. What we had was a choice of fighting it out with the city and state as to whether they would provide the education best suited for them, or to pick up part of the cost for institutionalizing them. I could never have imagined that my wife and I would do such a thing to Nathaniel, although we were presented with that choice. Many parents were, It was, in some cases, all that the parents could do. Now, with awareness of autism at a peak, and health care laws that cover autism, things are certainly better. Read more!

Mercury and vaccines

Generally I try to stay focused on autism in adults, but there is so much interest in mercury (Thimerosal) in vaccines that I wanted to share this article with you (A ban on mercury in vaccines). I am not convinced that autism is attributed to vaccines, at least not on its own, but it is still a good idea to remove mercury, a known toxin, from all vaccines world-wide, not just in the US. Leave it to the pharmaceutical industry to remove Thimerosal in vaccines in the US (FDA order) and not in vaccines for the rest of the world. Read more!

Parade Magazine for April 3

For us parents with autistic adults, isn't this what we fear the most (Parade Magazine, April 3). In one small way, Nathaniel was lucky. The cost to the state of MD was lower since there was more money to go to autistic kids back in the mid "90s when he entered the program. On the other hand, the facility in Austin, as mentioned in the article, and other facilities around the country didn't exist. Although Dana in many ways is like Nathaniel (no speech or communication, eye contact, full time care, cute as a button)he never has tried to communicate complex thoughts by other means like typing or pointing to pictures to convey needs.I will say again that planning has to start much more early that when your child reaches 18 or 21. Things that you don't even think about like estate planning (discretionary trusts) need to be talked through with family and, as you see, lawyers. Sad but true. Read more!

National Autism Awareness Month, April 2011

As I am sure that you are aware, April is National Autism Awareness Month. I wished that we had this back in ’81 when Nathaniel was diagnosed. Unfortunately we didn’t and those of us who now have autistic adults yearn for what might have been. Looking at the video I posted here (sorry for the quality, but it was on 8mm tape) it’s a wonder that we didn’t feel concerned about Nathaniel. It’s pretty clear which child would eventually be recognized as autistic. In ’81 we had to pass through hoops to get Nathaniel the proper education as mandated by Title 9. He was “special ed” but not necessarily autistic, so class sizes were not taken into consideration and teachers did not have the proper training. My wife and I ended up taking Nathaniel to the Kennedy Center at Johns Hopkin (yes, Johns) University. With the diagnosis in hand, we got the education he needed. All we needed was a trained teacher. For that, we obtained a grant to a special center in North Carolina and sent one of the special ed teachers. We were on our way. Read more!

Autistic student wanders off

This news video really cuts to the chase for those who have kids that can not speak. Read more!

A new movie to come out

I have just heard about a new movie that will come out in late April. It's called "Fly Away" and concerns a mother bringing up her autistic child into adulthood. It might be worth watching when it comes out. And remember that April is Autism Awareness Month. Read more!

A New Care Provider

Late last month Nathaniel went through one of those harrowing experiences that we have come to dread. He got a new weekend care provider. As parents of autistic children and adults know, change does not come easy. At one point in Nathaniel’s live he “worked” his way through change by twirling his hair until he yanked out some of it, pinched the back of his neck until it bled (he still has the scars to prove it) or simply bit his arm, all apparent coping mechanisms for managing change. So we prepared ourselves. It is somewhat more different when our son is at a distance from us. Of course, being there you feel the pain almost as much as they do. After all, its like watching your child being tortured even though he is the one ding the torturing. But at least you feel like you can help sooth the pain with hugs and kisses (and distractions). At a distance, you are at a loss as to what to do. All you can really do is wait for the phone calls to come. Fortunately Nathaniel went through this change pretty well. As an adult, he has found other coping mechanisms that allay the panic, usually in the form of excessive arm flapping and sweat. Once realizing that he can just go into his own room without interference, he finds his own space, one that is comforting even though we wish we could help in that comfort. Read more!

Back To His Routine

It has been far too long since I posted, so I will try to make amends.Christmas, and alas Nathaniel, have come and gone. Shelley took Nathaniel back to MD and weeped all the way home. We know he is happy there because he usually asks for “Lucky House” about 4 weeks into his Christmas holiday. Get back to the routine he is comfortable with. We did have is semi-annual conference call with all of his care providers a few weeks ago. Our biggest concern (well, at least mine) is how to keep Nathaniel occupied when he is at his day placement and at his home. Parents’ you have to stay on top of this if you have your autistic child in a group setting outside their parent’s home. The staff can become very lazy when they have a child that doesn’t know how to ask to get involved. With Nathaniel, my concern is that he is OK with sitting in front of the TV watching Sesame Street. Even though there are two other special needs adults in the house, Nathaniel still needs some full time attention. His primary care provider loves Nathaniel more than her own child (Nathaniel does not talk back, doesn’t ask for anything, except a trip to MacDonald’s for a coke), and we are grateful that she is in Nathaniel’s life. She dotes on him and buys him wonderful clothes out of her own pocket (Nathaniel is the best dressed kid at his day placement). But I would rather have her buy him a pencil and sit down with him to draw than to buy the most expensive coat. You parents out there must insist on this. Read more!

Having a Merry Christmas

Merry Christmas Eve. I sometimes wish I could get into Nathaniel’s head and see what he is thinking. Generally Nathaniel puts the past behind him as if he checks something off his list. But Christmas is different. Nathaniel still fervently believes in Santa Claus and puts up his stocking on Christmas Eve. Although he can't vocalize it, we can tell that he is excited. For one, Nathaniel sweats when he gets excited. He knows it means Santa and “packages” will be under the tree sometime soon. He might equate the reciting of “Twas the Night before Christmas with the coming event, but we’re not sure When Nathaniel was 3 years old (and for every Christmas Eve for the last 28 years) I recited T'was the night before Christmas. On his 4th Christmas he recited it with me. Yes, he remembered the words for a whole year! Pretty good, huh. He does like to look at the lights and, for some reason this year, wants to only watch Christmas movies. And we have lots of them! I have to admit that I get frustrated with him on Christmas day. He likes to unwrap the packages and is not all that interested in what’s inside. The unwrapping usually runs 4 hours; he not only likes to unwrap but also to strip small pieces from the wrapping paper. Very small strips! Well I hope that everyone has a good Christmas. Enjoy your packages. Read more!

Nathaniel has made it and Shelley has survived her trip to Baltimore to get Nathaniel. I told Shelley that there is nothing to do at this airport, but she only went with two books and a blanket. She expected 10 hours there while she waited, but as it turned out, the weather made the wait even longer. Nathaniel ended up waiting with her the last 4 hours (she should have taken the DVD player). So the trip began at 4:30 am Sunday, and the return was at 10:30. They got home at 1:30 am. However, Nathaniel still wanted his usual snack of cheese-crackers. Merry Christmas everyone. Read more!

Happy Return

With Nathaniel living in Maryland and since we live in Alabama it is always exciting when he comes down. This time, of course, for Christmas. To prepare, his mother, the Holiday Princess, has already finished decorating for Christmas, and it's only Nov 23. Shelley likes to have the house all dressed up by the time he arrives, which will be Dec 12. It is always a challenge with Nathaniel. Since he need full supervision, one of us has to go up to Baltimore to bring him back down. So this year, Shelley flys up in the morning, waits 10 hours for the next flight back to Alabama. About 2 hours before the plane leaves his care provider brings him to the airport (or as Nathaniel calls it, "Airplane!" The real challenge is to make sure that he sits with his mother both ways, but even more complicated is that Shelley must make a one way trip set for Dec 12 and return Jan 14, then two round trip tickets for her with Nathaniel Baltimore - Alabama for Dec 12 and Jan 14. Logistics the army would be proud of. Read more!