An Unwelcome Surprise

Over the past couple of weeks I had been formulating a new blog post in my head. I was planning to talk about how great things are going with Alex now. Over the past month, he's made progress in leaps and bounds which is such a relief after a tough few weeks. In his progress report at school, I read the phrases "significant progress" and "excellent progress" in several different places from his various therapists. At my parent-teacher conference, his teacher told me that she and all of his other therapists have noticed a sharp increase in his attention and understanding of what is going on in his classroom. He's able to listen and follow directions much better than before and his language and eye contact have improved significantly, even just since September.

When thinking about it, I've been attributing his progress to several things. He has settled into a good routine this school year which includes full-time preschool as well as hours of therapies outside of school with therapists who know him well and to whom he responds well. We've weeded out therapists that weren't a good fit for him and held onto several that really get good results with him. He waited for months to get into a sought-after center for Occupational Therapy, and is responding very well to his weekly appointment there.

So, yesterday, my husband received word that his company was reorganizing and would have to lay off 25% of their employees. He had been there since the beginning; coming up on five years. He, along with 20 others, was let go. There's never a good time to lose your job, but this timing is very unfortunate. It's an expensive time of year anyway, and our health insurance just reset so we have a fairly large deductible that is adding up right now. It usually only takes us a month or two for the deductible to add up, mainly because of all of Alex's services. With the medical bills showing up in our mailbox and the Christmas bills becoming due, the financial situation could get a little scary soon. I'm pretty confident that Michael can find a job quickly, but the insurance situation is what really scares me. For starters, we'll be starting a new insurance plan for which we will almost definitely have a new deductible to pay up in the beginning, just after paying our current one. Also, we have to worry about what insurance companies are accepted by the two centers we use for Alex's services. The OT center only accepts two insurance companies and if we do end up with a company that is acceptable, if there is any break in services, Alex will have to go back to the bottom of the waiting list. We can pay out-of-pocket to bridge any gap, but it's nearly $200 per session. We wouldn't be able to do that for long!

Michael is very optimistic. He lost his job two weeks before Christmas in 2008 when I was pregnant with Alex and when I had just lost my job as well. The economy was worse and he had less career experience, but was able to find a job quickly and started (at the company that just laid him off) right after the first of the year. Today, the day after getting the news, he already has two interviews lined up so he's certainly not messing around. I'm trying to be optimistic along with him, but at the moment, I can't stop feeling angry. I'm angry that this will most likely affect Alex for the worse. I was so happy with his progress and the great routine we had settled into and now it's going to get disrupted. It's just not fair to him. 

When Progress Is Slow

It's really tough during the "slow" times. Right now, Alex's progress is in a lull. He had that great breakthrough where he started answering some questions independently, but the progress fizzled out. I know that more breakthroughs will come, but these long stagnant periods can feel as hard as regressions.

I don't embrace a negative outlook on Alex's situation, but lately I've been going through a period of some admitted pessimism. When I see a 4-year-old, or, frankly, a 3-year-old and am shocked by this child's advanced language, motor, and social skills, I am quickly reminded that my shock is due to Alex's deficits. I think that as he gets older, his differences become more obvious and pronounced. His sister is 15 months old and she just blows me away with her language and development. It makes me happy for her, but sad for things that never clicked with Alex during the "right" time period. 

It's also hard to know if I'm doing the right things for Alex. He is in school 5 days a week and gets therapies outside of school every day. He has ABA 4 days a week after school for an hour (two on Fridays,) Occupational therapy once a week, a music lesson on Saturdays as well as a social skills group for two hours, and Sunday School at church. He never really has a day off unless he's sick. His developmental pediatrician recently gave us a laundry list of home-activities that we should be working on. My question is "when?" When do we have time to work on all of these home-activities, and when does Alex get a chance to just be a kid? I mean, many kids his age haven't even been exposed to school yet at all; yet here we are placing a million demands on him. When we're at home, I naturally incorporate ways of encouraging him to use his language, but I really just want to enjoy my son and let him enjoy some relaxing moments. I love to read his favorite books to him over and over, and sing with him, and just snuggle sometimes. I've stopped feeling guilty about letting him watch his favorite TV shows once or twice a day because this kid needs a break from all of the demands placed on him. 

Anyway, I know I'll get through this momentary lapse of high hopes. Alex is a special little guy and he'll continue to amaze me for years to come. It's me, not him.

Regression and Hope

We are currently on vacation, staying with my parents for a week in my hometown. Before we left, things started to look up with Alex's rough patch. He had started eating better, although we still had to follow him around and feed him one bite at a time. He will rarely sit at the table and eat but at least he's not pushing away food as bad as he was a couple of weeks ago.

In the past, I've noticed that when Alex regresses, he has often come out of the regression with a new skill. It's a strange phenomenon that I can't explain, but apparently I'm not the only autism parent who has noted this. I was talking to one of Alex's ABA therapists and she said I'm at least the third parent who has said this to her.

A little over a week ago, Alex came home from his social skills group and answered my question "who did you see at Social Skills group today?" I mean, he actually answered the question, without me telling him the answer and him repeating it, and without me prompting him with the first letter of his friend's name. Granted, I helped him answer the first two of the three kids' names in the group, but he answered the third all on his own. I was so excited, I nearly knocked him over cheering for him! It doesn't matter that he may have figured the answer out by associating the third friend with the other two; the point is that he "got" that I was asking a question and that he should answer it, and that he did so without any help. Up until then, I had never gotten a sense that he remembered the past (last week or 5 minutes ago) because never, once, had we had any form of back-and-forth conversation where his end wasn't initiated and helped along by someone else. The only kind of conversation that he had ever participated in, unprompted, was when he asked for physical things that he couldn't do for himself, like watching something on TV or getting a drink, etc.

That was so huge to me. I've noticed little things like that once or twice over the past week. Today we were in my parents' motor home and when he saw the bathtub he said "teeny tiny bathtub!" This is a fairly big deal, too, because he commented on his environment completely without prompting, and made an independent statement. He found the bathtub remarkable and was able to come up with a way to describe it without anyone asking him to or telling him how.

I'm sure that in a few years I'll come back and read this and find it hard to believe that I hung so tightly onto tiny things like these. As his language comes together, these things will happen more and more and seem less and less amazing. Right now, though, I'm enjoying some hope and breathing a sigh of relief after coming out of a tough few weeks.

A Tough Spell

Alex never does well with transitions or major changes in routine. He always regresses in multiple areas whenever there's a break from school, we travel, or when anyone comes to stay at our house. We're used to that and have come to (begrudgingly) accept it. This summer, though, has been like nothing else, in a very bad way. The last two to three weeks have been the most frustrating weeks I've been through, probably since Alex first started Early Intervention two years ago.

Until the last year or so, I had always described Alex as a good eater. He wasn't crazy about meat or starchy things but he loved most fruits and veggies, so it wasn't a problem getting him to eat at every meal. I remember realizing, though, at some point within the last year and a half that his eating habits had slowly transitioned from "good" to "problematic." I'm now a little shocked to have an extremely picky eater on my hands.

There have been a lot of ups and downs but it's generally been smooth until very recently. He wouldn't eat much for a couple of weeks, or he would eat one thing once and then wouldn't touch the same thing the next day. He's pretty thin so I let it worry me for a while but I made myself stop because he seemed to make up for it when he'd go a week eating so much I could hardly believe it.

But now there's this tough spell. Dear God, please let this just be a phase! I'm attributing it to this being summer vacation from school and while he has a summer program, it's a completely different routine than during the school year. His eating has gotten so bad lately. His food preferences have narrowed to a very few things (generally unhealthy, like Nutella sandwiches.) Just when I was noticing that he was eating a smaller variety of things, he started edging out some of his all-time favorites, like carrots dipped in ranch dressing and apples with peanut butter.

I don't know where to go with this. I've talked to his ABA therapists and they suggest making him take "one bite" of something in order to get a treat. Well, that just doesn't work, and I definitely tried. He just gets more angry and upset when I try that. The problem with his eating is multi-layered and it seems to spiral out of control when these things happen:

1. He isn't aware of his hunger, or doesn't know how to tell me that he's hungry.
2. He starts humming/vocally stimming and that's when I know he's hungry. When he makes that noise, it's usually too late.
3. I ask him to make a choice between 2 or 3 things to eat or I just put something in front of him and cross my fingers.
4. He doesn't eat what's in front of him or only has 1 or 2 bites and won't eat any more (even if it's what he's chosen.)
5. His humming turns to screaming and crying out, which spirals into a tantrum.
6. When he's having a tantrum, there's no hope at getting any food into him (I might get hurt or he might choke) so I have to stay away.
7. It just gets worse because the longer he goes without eating, the worse he feels.

Sometimes he'll cry for as long as 2 hours. It. Is. Horrible. If I'm lucky, I can get him to watch something on TV and calm down. If he's calm enough, I can usually put food in his mouth and he'll eat it. But, yes, I have to sit there and hand or spoon-feed my 4-year-old son. The thing is, though, once he's finally eaten, he's a different kid! His language comes back and his personality and playfulness come back.

Last night Alex had a really good night; no tantrums and he ate a decent amount. I was so relieved and it occurred to me that night that daily tantrums have become the new norm. What was different last night? He grazed all afternoon and I never made him sit down at the table for a meal. I put food in his mouth while he went about playing. It was great and all that he didn't have a meltdown over being hungry, but overall, this is backwards progress. He had been doing so good sitting at the table and having his meals for a long time. I can't follow him around and feed him every day and he certainly can't rely on anyone doing that outside of home.

There are other new - and bad - things going on to, like his destructive sensory-seeking behaviors (i.e. wanting to "hug" the cats.) I just don't know what to do. I wish someone could just tell me what the right thing is. There's no perfect answer but I wish I knew which was the least bad.

There's one month until schools starts again and Alex goes back to his regular routine. I'm just going to try to keep calm and carry on, do my best for him, and plead for this to be just a phase.

The Importance of Networking

As I've noted before, I am only 2 years into this journey which will last for the rest of mine, Alex's, and our family's lives. Each stage will be different in dealing with his autism; there will be good days and difficult ones, good spells and bad; good weeks, months, and years, and also tough ones. This isn't true only for raising a child with different needs. Every family will have ups and downs and things will change as children grow older. Transitions inevitably happen - babies turn into children, then adolescents, teenagers, and adults. From what I understand, it happens faster than you can possibly imagine. Although I recognize that the potential is there for any family to experience trouble during the teenage years of their children's lives, I am dreading this future inevitability. I don't have any idea where Alex will be falling on the "Spectrum" at that point - will he be able to communicate with his peers effectively at all? Will he fit in? Will he even be aware of it if he doesn't fit in? Will he have friends? Will he be in our public school system or will we have to place him in a school for children with autism? Will he be able to function in the high school setting at all without extra support? I've heard that the teenage years can be some of the most difficult years for kids with autism because the changes in their minds and bodies can just throw them for a loop even more than their typically developing peers. 

When we first discovered that Alex had autism, I felt completely isolated. There were a few months there that I would describe as the most difficult of my life. My husband and I went through the grieving and resolving process together, but separately too. Neither of us was close enough to someone in the same boat to really feel like we had someone to talk to. I talked to professionals who knew a lot about autism, but none of them had gone through or were going through the process of raising their own beloved child with this pervasive, inexplicable problem. Those were some very, very difficult months.

When Alex turned 3 and started preschool, I finally began to meet and talk to some other parents who spoke my new but suddenly native language. I can't describe the difference in the way I feel today versus 2 years ago and I attribute that to the network of friends I've made beginning with Alex's classmates' parents. This is absolutely why there is such a thing as a "support group." There is something about knowing that I'm not the only person in the world who has these feelings of sadness and guilt, exhaustion, and also celebration in small - tiny - victories because my heart still skips a beat every time Alex makes eye contact with me and calls me "Mommy." I dare say that a lot of parents have the liberty of taking those things for granted by the time their children are 4 years old. I love being able to share little things like that with other parents and have them get excited with me. They truly understand why I am excited when Alex does a little thing like actually sit down and take his shoes off  - by himself - when directed. I mean, he really does that now! Almost every time! He is still a defiant 4-year-old sometimes, and you know what? I LOVE that! Bring it on!

One of the most important aspects of networking is sharing resources. It's totally overwhelming to navigate all of the resources available to you and your child on the spectrum. It's wonderful to be able to share information about doctors, therapy centers, schools, and the endless range of services out there. Just like with a plumber, roofer, or restaurant, it makes a big difference when your friend tells you how good or bad a service is.

Networking has been pivotal in my own mental well-being as well as in my pursuit of services and therapies for Alex. I know that it will continue to be as we navigate transitions and find ourselves deep into Alex's teenage years and beyond. To know that I will have friends who understand my feelings, can exchange advice with me, and who will be able to dive in alongside me is a great comfort.  

Looking Back

A lot of people have asked if my husband and I knew that Alex had autism when we decided to have another baby. We've been judged for making the decision to have another knowing that our children are at an increased risk of being affected by autism. This is a criticism I've encountered more inside the autism world by other special needs parents, than outside. It's disappointing to me that parents who likely feel the claws of criticism more than the average, feel the need to judge other parents who've made a different decision than they would.

The answer is, Yes; my husband and I were fully aware that our son had autism when we decided to have another baby, and Yes; we knew that our subsequent children were at an increased risk for having autism. We didn't take the decision lightly at all. We had been close to ready to have another baby way back when we realized Alex was showing clear signs of a developmental delay. We put everything on hold until we had a better handle on how to help our little guy. Then we agonized and agonized over the decision to give Alex a little brother or sister. Eventually, we decided that 1) if the child had a 10% chance of having autism (versus the general population's chance of 1%,) that was still a 90% chance that he or she would not have autism. 2) Alex would really benefit in the long run from a sibling for many reasons. 3) If the child did end up having autism, we would be better equipped to catch it early and intervene even earlier this time.

That all being said, now I have a beautiful 10-month-old daughter who I'm just not the least bit worried about. At this point, I'm convinced that Amelia is a "typically developing" child and will not go on to regress into autism. Comparing my children to each other is not my favorite thing to do, but I can't help but think about where Alex was at this age. Technically, Alex met his milestones on time up until about 18 - 24 months old. Amelia is doing the same, but there is such a clear difference between her and her brother. Every child is different but I firmly believe now that if Amelia had been my first and Alex had been my second, I would have caught the differences earlier. Amelia is a social creature. She loves people and is always trying to share interest and enjoyment with others. She waves and points, looks at us for feedback when she's curious or nervous about something, and is even starting to say some meaningful words at 10 months old. She'll say "ba" when she sees a ball "cat" when she sees a cat and "doggie" when she sees a dog. Alex had some words by 12 months, but it wasn't the same. His words were not attached to objects; they were mimicked words that had no actual meaning to him.

That brings me to another topic that's been on my mind lately, and which really deserves its own post. I just want to mention the whole "born with it" versus regression debate. So many parents report that they see a real regression shortly after their children received certain immunizations. There's always a huge debate over the topic because parents, who know their children better than anyone, swear that their child's behavior changed after receiving immunizations. I believe that they know what they are talking about. My experience has been that sometimes, no matter how well you try to explain your child's behavior to someone else, no one can quite understand it the way you do as the parent. I hate to see this debate dismissed by the experts. Supposedly, studies have been done which show no connection between autism and immunizations. What if certain children are more susceptible? I'm saying that because I don't believe that there is one clear cause of autism, immunizations or otherwise.

I can say that, looking back, I believe that Alex had autism at birth, or shortly thereafter. Now that I can look back and compare his babyhood to Amelia's, there are many subtle differences. Just the fact that from birth, Alex liked to watch spinning things (which is now an obsession of his) tells me that his autism didn't appear out of nowhere. He always seemed to fall outside the norm just a little but I never put it all together until later. Alex was a constantly fussy baby who never slept well and so friends would tell us "just take him for a ride in the car!" Haven't we all heard story after story of parents who would drive around the block to get their baby to sleep? Well, Alex would have nothing to do with that. That poor baby would cry and scream as soon as the car started moving straight until it stopped and we took him out of the car seat. Taking him anywhere in the car until he was over a year old was torture for everyone involved. There are a lot of little things like that - people would give us advice and it always seemed like I was thinking to myself, as I still do today, "Yeah, that doesn't apply to us."

To sum it up, I've really come full circle in my perspective on the causes of autism. This is partly why I want to talk to other parents; I'd love to learn of many others' experience with this. When Alex was first diagnosed, I wasn't aware and/or ready to admit that signs of his autism were present very early on. Therefore, I've gone from thinking that there must have been some environmental influence that caused him to regress somewhere in his second year of  life, to thinking that if there was an environmental influence, it most likely happened in-utero and had already begun to affect his brain before he was born.

My Little Puzzle

Alex is just now getting so he can tell me when he wants something and what he wants with some consistency within a limited number of needs. He's never been able to tell me when something hurts or how he feels in any way. I'd like to say that I've gotten pretty good at knowing what he needs all of the time but unfortunately it doesn't always come easy. I know that when he's hungry or uncomfortable ("disregulated") in some way, he has a vocal stim that sounds like a growl. It's very hard to break through his shell when he's making that sound so he usually won't communicate to me what he'll eat; I just have to choose something and hope he'll eat it. If it goes too long, he won't eat and it'll turn into a tantrum. At that point, there's a long process we need to go through to get him back. His tantrums can go on for an hour or more.

It has gotten better. A year and a half ago, Alex's only form of communication that we could recognize was crying. He had absolutely no meaningful words or phrases and couldn't tell us what he wanted. The very first phrase he learned to use was "I want milk." He would only say those words, though, if we prompted him by saying "I...." and using hand-over-hand sign language by putting his hand to his chest. This was the beginning of a revolution of learning for him. He now has many functional phrases that he uses and he also uses some independent language, which to me, feels like a beautiful miracle.

Although he's learned a lot of language since we started therapies, he is still a puzzle to me. After delving into the biomedical approach to treating autism (namely diet changes,) I'm always looking for patterns in Alex's behavior. However, if he's proven one thing to me, it is that as soon as I figure something out, it'll change. For example, over the last few months, Michael and I would take Amelia and Alex to the mall and we would have dinner in the food court. It was a way to get us out of the house during the winter so we did it every couple of weeks. Alex was great; he'd ride in the double stroller with Amelia and sit calmly at the table with us to eat dinner. Recently, when we tried to go out for dinner and in two separate restaurants (at two separate times,) Alex wouldn't sit down and just cried and fussed until we left. He seemed truly bothered and unsettled; almost scared by something in the restaurants. Then when we tried to go to the mall where we thought he would be comfortable, he was on the verge of throwing a tantrum before we even walked through the doors. I don't know what changed but he can't tell us, so we're left to take educated guesses.

One thing I do know is that when he starts showing the signs of discomfort, even if he can't tell me what's wrong, I need to do my best to help him meet his needs. If I don't, he goes into a downward spiral of feeling worse and being less able to communicate. I recently read the book "Ten Things Every Child with Autism Wishes You Knew" by Ellen Notbohm. In the book she writes that all actions are communication. I've really started to try to tune into Alex's actions so that I can find out what he needs. I'll do this for my boy until he can do it for himself!

A New Project

I've talked to quite a few parents of kids on the autism spectrum since getting Alex's diagnosis. I've often heard something along the lines of "I can't believe I didn't catch it sooner," a thought that I've tortured myself with as well. I find it really fascinating to hear about parents' observations of their children as infants. I have an 8-month-old daughter and when I compare her behavior to her brother's as a baby, it is totally different. For example, Amelia is very interested in the people nearby to her while Alex as a baby was more concerned with the objects in the room; the clocks, the ceiling fans, etc. Alex was my first baby, and I had nothing to compare his behavior to. I didn't instinctively know that he "should" be more interested in people. Further, though without anything scientific backing me up, I would say that I'm sure there are babies out there who weren't enthusiastic about people but ended up developing normally as they grew. There is such a variation in people and personalities that it's so difficult to know what is "normal." That is part of the reason that autism can't really be diagnosed until 18 months of age.

After talking to many parents, I find myself thirsting for more information; more anecdotal stories. Within the autism community, there is debate over whether kids are born with the disorder, or whether it develops during their infancy. I've read that some cases of autism seem to be present at birth, but so far, I've only spoken with parents who noticed that something was "off" after the age of 18 months. But many of them report that, while their child, for all intents and purposes, was developing normally (i.e. meeting milestones at approximately the right time,) they were particularly difficult as babies. I've read of babies who went on to be diagnosed with autism being particularly easy, but I haven't yet met any parents who reported that. I've also talked to parents who have multiple children having one baby who was particularly difficult, but went on to develop normally.

I'm very curious to hear stories from more parents of kids on the autism spectrum, and also those with "neurotypical" children. It's weighing so heavily on me that I think I need to resolve by writing a book. I'd like to interview dozens and dozens of parents who have children on the spectrum, and also some parents who have typically developing children.

I'm looking forward to this!

Outside the Norm

Now that it's been over a year since Alex was diagnosed with autism and almost 2 years since we realized something was amiss with his development, I've had some time to adjust to our new reality. It's hard to imagine any more what it felt like to think I had a typically developing child. The more time goes on, the more comfortable I feel with my new reality. A while ago, I read a blog post (and recently had a similar conversation with a fellow autism mom) where a mother said that she was asked if she would take away her child's diagnosis if she had the choice. She responded with "For him, I would, but for me, I wouldn't." I think as time goes on, I agree more and more with that statement. If I could change Alex and have him be "neurotypical," I probably would do it for his sake. I would do it so that he would have a better chance at fitting in socially and a smaller chance of having a stigma follow him through life. I would do it so that he wouldn't be frustrated by his sometimes inability to communicate with others, and his apparent discomfort in situations which are inexplicable to me. But if it were only for my sake, I would keep things the way they are. I've only just begun this journey - Alex isn't even 4 years old - and I already feel that my life has changed for the better. For one thing, having gone through very difficult times, I feel emotionally stronger, and I feel empowered to advocate for, not just my own son, but for other individuals with special challenges; a feeling I will undoubtedly carry with me into future endeavors. The meekness and shyness that I once embodied is long gone, replaced with confidence and boldness that I never could have imagined. And when it comes to Alex himself, well, I just love him to the very core (not that I think any parent doesn't love their child!) He doesn't talk much, but his personality exudes sweetness and I wouldn't change that for the world. I've grown quite fond of some of his behaviors, too; for example his new-found satisfaction with putting cans and paper into the recycling bins, and the pride he feels when he's praised for it.

In a way, it's fitting that my son ended up outside the norm (what is "normal" anyway?) I've always felt outside the norm myself in my adult life. My husband and I got married very young (I was 19, he was 22) and people really raised eyebrows at us - especially because we didn't live together before marriage. But we're coming up on our 9th anniversary and have a great marriage. We own a house which we love in the town we sought after, and are raising two beautiful children. If I had pursued the 4-year college experience, I most likely wouldn't have this life with my husband yet. I love my life the way it is so if someone asked if I would go back and change it, my response would be "probably not." Of course there are some things I would have done differently in hindsight, but can't everyone say that? On a less important note, we've chosen to go without cable television for all of the time we've been together. While it seems insignificant, many people we've discussed it with say that they can't imagine life without cable. When Verizon and Comcast salespeople knock on our door every other week, it's sort of amusing to explain that we only use internet. Over and over, I could easily put the words "does not compute" in their mouths. We do have a television but do not miss cable TV. My point is, there are many examples, significant and not, where mine and my husband's lives fall outside what our peers expect from us.

So it feels almost fitting that our child is outside the norm. We've never really known what it was like to relate to our peers and having a special needs child falls under that blanket. Over the years I've gotten used to thinking to myself, "yeah, that doesn't apply to me." The "me" has turned to "us" or "Alex" in a lot of cases but it's still a similar and familiar feeling. I wish my son didn't have to face life being different while I had the privilege of choosing to be different in many ways. I can only hope and pray that as an adult he'll be as happy as I am, right now, raising a wonderful, sweet, special boy and his splendid little sister.

Why Such A Good Day?

Alex had such a great day today! Today is a Saturday and I spent the entire day with him (less 8:-9:30 while I was at Yoga.) During the week, he goes to school every day and I really don't see him when he's at his best. By the time he comes home, he's tired and often cranky - and then he has his ABA sessions, so by the time I have time with him, it's time for dinner, bath, and bed.

As I mentioned in my last post, Alex really thrives on routine and it takes him awhile to adjust to a new routine. After the New Year, I started Alex in a social skills group through the ABA center we use. We also started a new music class with a professional who has a child on the spectrum as well. Well, today was the first Saturday that was fantastic since we started this new routine in the New Year.

I just want to list the things he did throughout the day that I was excited about:

* At social skills group, he initiated singing "London Bridge Is Falling Down" with one of the group leaders.

*  At social skills group, during a turn-taking activity, his peer got upset. Alex immediately said "your turn!" and gave the toy to his friend (I and the group leaders assume it was to make him stop crying.)

 * The group leaders called this his "breakout session" - they were so very pleased with his behavior today.

* At music class, Alex sat down and, without prompting, followed the color-coded music his teacher had written out for him on the small keyboard she had been working with him on.

* This evening, he initiated the "hug game" with me. He actually took something out of my hand, put it down, and initiated the game with me.

In addition to all of those things, his language was great today and I didn't notice him stimming at all.

So, what made this day so good? I don't know! I wish I knew what I could do to help him have a fantastic Saturday like this again. It could be that he's getting used to the new Saturday routine. It could be that he slept enough, ate enough, or ate the right foods. Maybe it was a combination of things. Unfortunately, this great day was not the rule, but the exception.

Recovering from Christmas

Christmas day was more than 2 weeks ago and Alex is just now recovering from the change in routine. I do believe that the social story helped. He was such a champ during the car ride to visit his grandparents in New York. His behavior at my parents' house was certainly much better than it was the first time we visited after his symptoms had become apparent. I remember him humming and growling through that entire visit that time. (I've now come to know that behavior as a vocal stim. He hums and growls because it provides his body with some sort of stimulation it needs for him, like scratching an itch.)

By the end of Christmas vacation, I could not wait for Alex to go back to school. Not because I wanted him out of the house, but because he is so much happier and comfortable when in his regular routine. I noticed that his behavior deteriorated each day of vacation. Each day, he became more disregulated and would sink further into his stimming behaviors and be less able to communicate and to shift his attention to someone trying to interact with him. When he regresses like this, it reminds me how far he has come. To make the comparison, on a normal day, Alex will sing songs to himself but not hum or growl. He'll answer choice questions with little prompting: "do you want an apple or an orange?" He'll entertain himself by playing with toys, or happily play turn-taking games with others. He'll ask for food and/or drinks when he needs them, and follow simple directions assuming he understands them. On a usual day, he's a happy, cooperative, content, good-natured little guy. He'll even occasionally blow us away with an unprompted, unscripted, independent sentence! Those are the good days. By the last day of vacation and for the 2 weeks that followed, he was humming and growling at least half the time and practicing his stimming behaviors like turning light switches on and off and spinning wheels and other objects. He couldn't answer questions or say much at all; in fact, we usually couldn't get him to stop humming long enough to listen to a question, much less answer it. He wouldn't sit still to read a book with us or play a game, wouldn't tell us when he was hungry or thirsty, and was just generally grumpy constantly. It felt like we stepped backward by about 6 months. Thankfully, the recovery back out of the regression is only taking a matter of weeks and not months.

You can understand why I'm glad school vacation is behind us and why I'm not looking forward to any future disruptions. I love to visit family and have people visit us, but I just can't find the enthusiasm that I used to for such visits. I hope that as time goes on, Alex will become more able to deal with change. Even small every-day changes disrupt him. It would be nice for family members and friends to be able to see how Alex acts at home because he's made so much progress. But their sheer presence throws him off and causes him to act differently. That applies when we go anywhere (ie to someone's house) or even when people come to visit us.

I guess for now, I'm just happy to settle into a month or two of routine. Alex will take three more steps forward before he takes a step back and that's good enough. We don't exactly have a choice - life throws change at you no matter what.