Coping with Autism

Several days ago, I wrote about sleep and autism. Many children who are autistic have significant problems with establishing consistent sleep patterns. I then made the fatal mistake of mentioning that Peter (who has had the worst sleep habits of all three kids) has settled into a routine that allows my husband and me to get a full night's sleep most of the time. Well, that's no longer true. You may notice that the time stamp on this post is midnight. I am awake because Peter apparently feels that he doesn't need sleep tonight or at least not anytime soon. And since he has discovered that he can escape both gate and crib, there is little to keep him confined in his room. We have found that, by confining him in his room, we can get him to calm down long enough to go to sleep. Not now. My husband did have a very good idea for fixing this problem but we still need to iron out some logistical issues. At the moment we are thinking of installing something like an old-fashioned bar...

My husband is off today which is unusual. Normally he works Saturday mornings and because he gets up really early (2:30 a.m.), he's exhausted by the time he gets home. This means he takes a nap (he falls asleep whether he wants to or not) and I have all three kids by myself for almost the full day with little relief in sight. (When he does wake from his nap, my husband is still tired and grumpy.) Today, I get a little break. I won't have to wrestle Peter during naptime by myself. I won't have to harp at Gabrielle to clean up one of her many notorious messes. (Why is it dads can say something once in that deeper voice and kids jump to obey?) And Nathan will have another person with which to play jungle gym. Now, if I could convince my husband to let me take a nap. . .

Peter, again, refused to cooperate last night at bedtime and ended up finally going to sleep at midnight. And he didn't want to nap today so, being the Houdini that he is, he managed to escape my seemingly impenetrable jerry-rigged blockade while I was writing downstairs. He then decided that our upstairs bathroom needed to be turned into a swimming pool or small lake. I know this because, as I wrote, I suddenly heard additional water-dripping sounds apart from those made by our fishtank. My kitchen ceiling was leaking. I ran upstairs to discover, to my horror, that my bathroom was (and still is) greatly flooded. So I sit here, exhausted, out of clean and dirty dry towels, trying to decide if I should call my husband now or later to tell him. Later, definitely later.

Last night we had to put Peter back in the crib (I was so looking for to taking it down!). As I mentioned in a previous post, Peter has gotten tall enough to hike his leg over the gate and hoist himself up and over. And kids with autism are horrible sleepers and nappers. Take the average child's reluctance to sleep or nap, cube it and you're close to what it's like. Next step will be a sit down discussion with my husband to brainstorm our options. We'll end up deciding on a solution after we look at catalogs, visit the baby section of a store for safety ideas and take into consideration Peter's personality. In the meantime, we're adapting to the situation as much as possible.

It's amazing what we take for granted as "normal." Getting the boys haircuts is so difficult. They are too old for a stroller so I can't strap one of them in while getting the other one's hair cut. And often I have to sit with each boy to keep him calm while this is going on. So I have to go with someone else-- I can't get their haircuts done by myself but it seems like my husband is always at work and he's the best one to go with me. Yesterday, I finally broke down and bought a hair clipper kit. Up to this point I thought if I tried to cut the boys' hair I would tear their hair up and it would look awful. However, Nathan was beginning to look like a girl with his hair so long and fluffy (my husband and I both have thick hair so each of the kids has really thick hair). So I clipped the boys' hair late yesterday and, even if I do say so myself, they both look pretty good. Granted they could have held still longer so I could trim the temples a little...

Nathan's fever broke over the weekend (his fever lasted about 24 hours or so) but he's been in a grumpy/clingy mood ever since. I'm fearful he has an ear infection (which is more common in kids with autism) and I'm praying he doesn't. He's supposed to see an ENT on Thursday as a follow-up to a previous appointment. However, when he has an ear infection he's extremely grumpy and extremely clingy and it's impossible to get anything done. To add to this, over the weekend Peter figured out how to climb over his gate (without a chair or any other height enabling assistance). He has gotten tall enough that he can swing his leg over, hoist himself up and drop to the other side and, although I do have concerns about his ability to sing anything lower than a high tenor in the future, he manages to do this without getting hurt. Right now he is lying on our couch supposedly attempting sleep but it doesn't sound like we will have a successful naptime. And, again...

I was shocked when we first started private therapy for the boys last year. An hour of speech and an hour of occupational therapy for both-- both therapists working together with each boy for 1 hour a week-- runs around $4000 a month. We are very fortunate, my husband works in Washington D.C. and his insurance through work is purchased in Maryland. Even though we live in Virginia, state law in Maryland applies to our insurance coverage. Maryland is one of only eight states that require autism services to be covered. While our insurance applies discounts to the services, they still pay somewhere around $2500 a month. I can't imagine what a family goes through if they can't afford this. We found that having the therapy early on, as soon as they were diagnosed, helped both boys tremendously. Neither was enrolled in the special-ed preschool services at the time and it was a couple of months before either qualified to enter school. Now, both boys continue to receive private therapy ...

Autism can be very isolating for the parents of these special children. My husband and I have to make an effort to be kind and loving to each other. We don't often get to go out on dates so we have to make the best of the time we have together. Whether it means a movie night while the kids are supposed to be going to sleep or spending a few minutes every day really talking to each other, we have to have that time together so that we don't feel isolated from each other. My husband's job keeps him away nearly all day between work and his commute so I have the kids most of the day by myself. During the school year this isn't so bad-- the day is split up into many different activities. However, come summer, I have to come up with some creative ways of entertaining three kids without breaking the bank or causing a county-wide state of emergency. Most of all, I have to manage to keep my sense of humor and my sanity most of the summer.

Friday seemed to start out fine but then I received a phone call from my sister saying that my daughter's school had been trying to reach me. Gabrielle was sick and my sister was on her way to pick her up. While this was happening, Nathan was exhibiting signs of a fever but showed no other symptoms. When I checked his temperature later, he had a fever of 103 degrees. Strangely, Peter remained healthy throughout all of this and both Nathan and Gabrielle were sick only for about 24 hours. Despite these random illnesses, Gabrielle was recovered and well by the time of her Tae Kwon Do belt graduation yesterday. She did very well and received her red belt (decided) which is her last color belt. In eight weeks she will test for her "black belt recommended" (it's actual color is a red stripe/black stripe) so she can beginning training for her black belt. Peter is doing well with his potty-training. We still have "oops" moments but that's the same with every chi...

I hate forgetting things. I hate forgetting appointments or sippy cups or meetings with teachers. I write things down and still I sometimes forget. I think it's the craziness, the constant going-- meetings, therapy, school-- that can overwhelm my memory and the silly thing shuts down. I think that part of my brain gets overloaded. Today, I confused one of Nathan's doctor's appointments with one of mine and switched the times. Of course, I realized what happened about ten minutes into what should have been his appointment. I tried calling and couldn't get through so we had to drive down there and ended up rescheduling. I used to be able to remember meetings and appointments with ease. Once upon a time, I could remember things I read, where they could be found and what page they were on-- sometimes even a year or more later. Now I'm lucky if I remember to write things down.

Peter is a climber. And Nathan has learned much from his brother. Peter is upstairs right now climbing in and out of his dresser drawers to reach the top-- although it's naptime and he is supposed to be sleeping. Earlier, Nathan was "performing" his new trick which he concocted only earlier this week. Nathan's big trick is to climb on the chest behind the loveseat, hoist himself onto the back of the loveseat, lie down and then roll down the front of the loveseat until he is lying on the seat cushions. He thinks it's great fun. What strikes me as so odd, or maybe sadly indicative of the grip autism has on our family, is how blase I am about the boys behavior. Five years ago, I would have been all over Gabrielle saying things like "be careful" and "don't do that" or removing temptation from her line of sight. Now, the boys' behavior can often be so "out there" that minor things like climbing to sit on the dresser or rolling onto...

Peter continues to surprise me. He is stereotypical in his autism (with the hand-flapping and squeals) and appears to be mentally disabled to many who meet him but he's very smart. As I've mentioned before, he is learning to potty train and today he has been coming up to me and handing me a diaper to let me know he has to go potty. He has volunteered to go potty very few times since he started going consistently so I've had to remember throughout the day to ask. Peter's very visual and I'm sure when he saw the diaper I had left out for his brother, it seemed a natural extension to use it to tell me what he needed. Now the next step is to get him to use his words all of the time instead of occasionally. His favorite thing to do (for now) is to say the alphabet and sign each letter as he says them. He is very much attracted to numbers and we've been adding more shapes to his geometry knowledge. He can identify all the usual shapes (star, moon, diamond, rectangle,...

Nathan is on the verge of talking. I say this because he is starting to use words or parts of words to express himself as opposed to just yelling or squealing. It's very limited speech-- "tha" for "that" or "no" or "tea" (to describe what I had in my hand) but I'm so excited, I can't wait to see what he will do next! Nathan is the baby and you can tell quite quickly that he knows it. I don't know how he knows but he does. Part of the reason I knew something was wrong originally was because he wasn't maturing as quickly as he should have (both developmentally and emotionally) and I was getting frustrated with how baby-like he was acting when he should have been acting more like a toddler. I find it strangely funny that the more I want him to act his age the more he acts like the spoiled one. So I can't force him to act his age, I can only encourage it in as many situations as possible. Don't get me wrong, Nathan is an a...

I think one of the most frustrating aspects of dealing with autism is the poor communication or speech skills of children diagnosed with the condition. Peter's speech is consistent with a child somewhere between one and two-years old. Nathan rarely speaks at all. Most days we do okay. Peter will come up and tell me something using just a word or short phrase and it is often enough for me to figure out what I need to ask him in order to get more information. But even this gets to be nearly an impossible task when he is tired or mad-- he has a harder time concentrating on the words which just serves to make him angry. Nathan communicates primarily using sign language although he is starting to name objects more frequently than he has in the past. He is pointing at cars (real ones and toys) saying "car." Today, he dropped something and said "Oh, no!"-- something I think he gets from me. Nathan's hearing was recently tested because we are trying to rule out any ...

The boys have been home all week from school (Gabrielle goes to a private school so she went back on Tuesday). And as things would go, both of them decided that napping was low on their list of priorities and took a nap only once this week. (And of course, I have writing deadlines looming over my head.) Sleep, for children with autism (and their parents!), is often a hit or miss game. Many parents experience sleep-shortened nights or sleepless nights while their little angels seem to have no concern over the lack of sunlight outside their windows. Peter did this for awhile and I know we are likely going to experience it again in the future. Some parents find it occurs in spurts every few weeks while others find that their children go one way or another for a few years and then switch. A few months before we got Peter's diagnosis, Nathan was on the way and, since we still live in a small home, we were trying to get Peter to share Gabrielle's room so we could put Nathan in the nu...

Just in case you didn't notice it in my bio, my husband and I have an eight-year-old daughter. It often seems like siblings get left out when you are dealing with one autistic child but two--whew! We have to make an extra effort to notice her achievements and praise her for things she has accomplished. She is currently completing her requirements to get her red belt (decided) in Tae Kwon Do. After that, she'll test for her "pre" black and begin training with the black belts. She'll test for her black belt when her instructor feels she is ready but it's usually anywhere from six months to a year. Gabs began taking TKD when she was 4. We enrolled her because we were scared to death she would walk off in the mall (which she did do) or walk up to a complete stranger and begin a conversation like they were her best friend (which she also did). It was stressful to shop with her because I couldn't really look at the merchandise in my hand--I was too distracted tr...

Peter actually told me he had to go "potty" today. Again, this is a big deal-- so far I've had to ask him, he hasn't initiated anything. We're making progress but this is often how Peter does things. Once he achieves a level of confidence in something he doesn't look back. We are very fortunate that he doesn't regress or hasn't shown any tendency to do so. Our biggest struggle so far (and there have been many) seems to be with his allergies. He has the stereotypical autistic look (frail upper body, often dark circles under the eyes, etc.) and the wretched laundry list of allergies. So far, Peter is allergic to soy, beef, potatoes, birch, oak, walnut, grass, dustmites, cats, dogs and. . . I'm forgetting something. Nathan tried to say "fish" again yesterday and if you haven't already guessed, we have a fish and two cats -- and yeah, I know, with Peter's allergies, etc., but the cats are getting old so we won't be replacing them ...

I'm not sure where this is coming from but Peter is coming up to me, looking me in the eyes and trying to wink. It's terribly funny. He screws up one eye and then the other and then watches while I wink at him. Nathan doesn't feel well today but he was showing off on Friday. He used about five words he had never used before (of course this is the one who rarely, if ever, says anything verbally) and he surprised both me and his teacher. Now, if we could just get a repeat performance :)

We spent our weekend at my in-laws in New Jersey (and I apologize for not posting--my father-in-law's computer wasn't cooperative). My niece is also on the autism spectrum so it's always interesting to compare notes with my sister-in-law. My niece, "B," is between my boys' ages so as Peter leads us into new territory, we compare Nathan and B to what Peter has done or is doing. On another topic, Peter is (finally) potty-training which you will discover, if you haven't already, is a big deal. I know one mom (also with two boys on the spectrum) whose oldest at 10 is still not potty-trained so this has been a big leap forward for us.

My husband and I learned in December 2005 that our son Peter, who was almost three, was autistic (specifically mild/moderate autism). In March 2006, we learned that his little brother Nathan was also autistic and was given a specific (or non-specific) diagnosis of PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified). Since then, we have joined the ranks of about a million other families who are coping with the everyday challenges and stresses of living with autism. If you find comfort in these postings then this will have been worth it. Let me say that each autistic child is unique just as each neuro-typical child is unique. Anything my children do or do not do may or may not be something your child does. Look to these postings as someone who walks with you-- we'll try to find humor in the odd things our children do and comfort in each of our challenges. Be sure to find support-- either in a local autism support group or with another family. Also, check around for doc...