The Evaluation Process

February 20th, 2012 | by Jeremy | assessment, autism

Feb
20

Article first published as The Evaluation Process on Technorati.

Brothers with Autism watching sealions at Seaworld. Currently our youngest son is going through the Autism evaluation process. With our oldest, this took months between appointments with a State psychologist. This time around we are going through the school district. The process is basically the same, though the financial impact is less (the school is evaluating our son for free). This is important, as Autism is still not a covered diagnosis for our health insurance in Utah.

This last week, on Tuesday (yes, Valentines Day), the school psychologist came out and evaluated our son in preschool. The report they sent back was that his speech is delayed by a year (of which we were well aware). The rest of the findings will continue on to his final evaluation in a couple of weeks. The process seems to be taking a long time for us, though I’m sure the school district is working as quickly as they can. It’s not surprising they are busy, as the current estimates of children with Autism in Utah is 1 in 77 (that’s almost 25%!). That’s a lot of children to get evaluated, tested, and placed in school.

Luckily for us, we have gone through this process, and know what to expect. Our first son, though not diagnosed through the school initially, was the real shocker for us. The impact was quite high, sending us through bouts of anger and depression while trying all we could to get our son started on the right path. It’s not something I would want to go through again, and so far this process with our youngest son has had less of an emotional impact.

And yet, it seems the school is unwilling to give him the Autism diagnosis, let alone mention the term. Perhaps they are fearful of scaring us with the prospect of having a child on the Spectrum. After all, I’m sure most parents would be devastated when they hear those words. I know we were the first time. But as we already have one child with Autism, it runs through my family (or rather gallops, it seems), we would be more relieved to know that our son is in a program that can best teach to his needs.

That being said, I have to say I am very impressed with our school district. They provide this service free of charge to make sure our son is best placed to succeed in his learning experiences. I can’t speak for other school districts, but from the horror stories I have heard from friends of family in other school districts both here in Utah and in other States, our school district is pretty impressive. I’m very grateful these services are provided, and think they should be more wide spread.

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Parental Training for Autism

January 27th, 2012 | by Jeremy | autism, learning

Jan
27

Article first published as Parental Training for Autism on Technorati.

Child with Autism and his teaching support group. The state of Autism support is daunting. More children are being diagnosed with Autism then ever before, schools are running low on funds and are unable to provide necessary services. Parents are running low on funds to provide services for their children personally. Insurance companies are reluctant to pay for services at the risk of raising premiums for their customers. The government is already running in the red in most States and at the Federal level. The financial situation is daunting when it comes to paying for specialists and therapists to work with children on the Spectrum.

But there is one group of people who are wiling to do the job for free, if they could only find out how: parents and caregivers. They consult with websites, books, and their children’s therapists and teachers. They do their research in trying to understand what they need to do. But we as parents are, quite frankly, not prepared. It’s not because we don’t care, it’s because we just don’t know. We need training, we need consultation, and we need help.

Luckily, at least in the Granite School District, the school system has had the insight to set up a parental training class on how to help their children with Autism. They have specialists come and talk to each parent about each part of Autism. Last night was the first night my wife and I attended, and we loved it. From what we learned, we are better able to understand the behaviors of both our children, and therefore better understand what they are trying to communicate.

It was also a good opportunity to get to know other parents who have children on the Spectrum. We can talk about shared experiences, goals, and get ideas from each other. It’s a social relationship that we can’t get any other way, as few others seem to understand our experiences. They don’t understand that when your child is yelling “No!” at you and trying to get you to say what they want, even if they are wrong, it’s progress.

This type of program is definitely something we need to continue for our schools. In the end, with the help of a few specialists, they are training a legion of special needs aides that will all work for free. That, in my mind, makes for a sustainable way forward in teaching children with Autism.

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Having A Good School System: Funding for Autism

January 13th, 2012 | by Jeremy | autism

Jan
13

Previously posted on Technorati as Having A Good School System: Funding for Autism.

Child with Autism on the pier at San Francisco. I’m very lucky. I live in the boundaries of one of the largest school districts (if not the largest) in the State of Utah. That means this school district is well funded as it covers the more affluent East side of the valley, as well as the less affluent West side. And because it is well funded, the school district has been able to build a special school for special needs students, like my son. He has an occupational therapist that works with him and his sensory needs, a speech therapist that is assisting him in learning to talk, a fabulous teacher that coordinates the effort, and a supportive environment that helps all the students that are in need.

And there are quite a few. As Autism becomes more recognized, more children are entering our public school system with needs that many schools across the country are finding difficult to meet due to funding issues. Many districts do not offer special programs for Autism, because they just can’t offer any special programs. Having spoken with many other parents in Utah, I’ve found that our school district tends to be an exception, rather than the rule. This is a problem, as in the State of Utah, Autism is not recognized as a diagnosis by insurance companies, and therefore they do not cover the cost of doctors visits, therapies, etc. But my school district has psychologists on staff that are trained to identify Autism, and cover it as part of the school experience. Once your child is signed up for pre-school, if you or the teacher has a concern about Autism, they are tested for free.

There has been a lot of talk about who should bear the brunt of the costs of Autism therapy. Currently, it is generally the parents of the children, registering their children for expensive therapy sessions that tend to cost between $30,000 to $50,000 a year. But for many less wealthy families, that can be more than they bring in for a year, so their children go untreated or are left to an ill-equipped public school system to try an manage. Insurance companies are concerned, because ABA therapy is a long-term committment, meaning regular pay-outs and a lot less money to build up their companies and pay their investors. If they are stuck with the bill, they say they will have to raise insurance rates for everyone, and as only 1% of the child population is diagnosed with Autism, the families of the other 99% feel like they are having to pay money for someone else. Another call is for the government to step up and increase their spending for Autism support services, as is done in the United Kingdom, among other countries. But with the current global economic state, many countries are calling on more austerity measures that tend to cut benefits like Autism therapy. And with many States seriously in the red on their budgets, spending for Autism services isn’t very appealing.

The bottom line is if no solution is found, then ultimately we all will pay country-wide, as these children with Autism start to move into the Welfare State because they were not given the proper intervention needed to help them contribute to society. And that can be a very long period of public funds paying for someone who would otherwise have been successful. It’s a problem that has no easy answer, to tell you the truth.

Personally, I’m grateful for the benefits I get through my school district. The Granite School District is one that I well respect, having been part of it my whole life (or at least K-12). The fact that they have services for my son, and soon my other son, is a comfort. But even as well funded as they are, they can’t be expected to keep up the pace they have for long without another answer. Classrooms are filling in quickly, and even my son was moved at last minute to a new class with a new teacher that was hired a week before school started. That tells you at which pace that the school district has had to move to keep up with all the new students on the Spectrum. If I had my way, I would like to see a conglomeration of funding come in to our public school systems, with proper and rigorous oversight, and build up programs for Autism across the State (or nation), and as part of that program, have lessons for parents with children on the Spectrum, so they know what they can and need to do to help their children. Because we as parents represent the largest unpaid teaching force in America.. I think it’s about time we were taught how to do it.

Perhaps that’s the answer, and perhaps not. I don’t claim to be an expert, but I do know what has worked for my child. What solution would you propose?

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Life Milestones and Autism: Testing Abstract Concepts

January 10th, 2012 | by Jeremy | autism

Jan
10

Previously posted on Technorati as Life Milestones and Autism: Testing Abstract Concepts.

Child with autism sitting on his great-uncle's lap Autism has an impact in many different parts of a family’s life. Families will battle with the condition in order to teach basic self-care skills such as hygiene, dressing one’s self, cooking (or at least getting cereal), and so on to be sure their children will have those skills that are necessary to take care of themselves. During these long sessions, other children are reaching milestones such as riding a bike, walking to school with friends, participating in important religious and social events, etc.

Of course parents are concerned that their children are missing out on these important childhood milestones, and look for ways to have their children enjoy as much as their peers. But some milestones require a level of understanding that is demonstrable that may not be possible for a child on the Spectrum. This becomes a problem.

Testing understanding has been pretty basic for most children throughout the years. You ask them questions, and see if they respond properly. Whether testing a belief or knowledge, it all comes down to how and what they respond. With children with Autism that may not be an effective method of testing their knowledge. Creative methods of examination need to be developed in order to understand what they know.

The basic question one needs to ask is, how can my child with Autism show his knowledge? Some can respond using a tablet and software, others using picture exchange. This works great for basic nouns and active verbs, but how does a child demonstrate an abstract thought with pictures and symbols in a way that makes sense?

I’m reminded of an episode of Seaquest DSV, where the dolphin, Darwin, was trying to convey his need to join his pod for a cure to his illness. The crew didn’t understand what he was saying, because the concept was so abstract that it didn’t translate well. Similar to children who are non-verbal, they may not be able to make sense of an abstract thought based on what they hear, or even if they do understand that thought, they may not be able to translate it with their given tools.

So what is a parent to do? It’s a judgement call that parents need to make for themselves, with the help of organizational support. If it is a religious belief that is being tested, then they need to decide whether or not that belief can be properly expressed given the tools they have. If it is a relationship between safety and hunting, judgement calls, etc. from other organizational training that is required to reach a certain level of understanding, then the organization should be able to judge based on what is required to know.

Luckily for parents, this road is being blazed before them by countless Special Education teachers and administrators that need to create quality, quantifiable testing methods for children on the spectrum. It all comes down to finding a way for the child to successfully demonstrate their knowledge. It’s a challenge that can be exciting, as long as you have a way forward.

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The True Cost of Autism: It’s Not Just Money

December 20th, 2011 | by Jeremy | autism

Dec
20

Article first published as The True Cost of Autism: It’s Not Just Money on Technorati.

Child with a Santa hat on. A lot has been made in the debate about Autism and healthcare, because of the potential burden it will place on insurance companies, who will most likely trickle that cost down to everyone. I’m not going to get into the debate as to whether or not insurance coverage for Autism is right or justified, but rather I want to talk about the costs of Autism. Or, more specifically, the overall toll Autism plays on families.

Applied Behavior Analysis (ABA) therapy is the only therapy or “treatment” that seems to work with children with Autism. It uses the Behavioralist method of teaching by encouraging correct behaviors with rewards. It also uses the Environmentalist teaching method, in that practitioners eliminate distractions from the classroom environment, making it easier for the children to learn. It’s great, when done correctly, and it can be expensive.

In order for it to work, you need to have a psychologist on staff, your therapist, an occupational therapist (manages sensory needs as well as motor skills), and a teacher. Most often your staff to student ratio comes very close to 1:1, and that’s expensive. These are all highly trained individuals that have worked hard, studied hard, and spent a lot of money to get their education customized to work with these children.

Now, many good school districts, much like the one we are currently in, have great programs that provide all this as part of the Public school system. Most do not, from what I understand. Therefore parents need to go to special private schools, often costing them between $28,000 to $50,000 a year per student. If they have two children, it’s doubled, and so on for each child on the Spectrum. It’s not the most encouraging sign.

And, of course, these schools and supportive school districts are few and far between. That means either driving long distances, or moving to locations that have support for children on the Spectrum. This limits job mobility, housing opportunities, and a feeling of control that many people have naturally. That goes to piece of mind, and is a hidden stress point on families with children on the Spectrum.

But therapy isn’t the only thing that is expensive! When the child goes home, they need to continue the same routines that they are being taught at school. Therefore parents need to modify the home environment to match, as much as possible, the school environment. For some families, that means providing a “sensory room”, where children can pull out of their fog by being provided the sensory stimulation or deprivation they need, depending on their sensory needs. So dark rooms, soft music, indoor swings, trampolines, full body massagers, and a ball pit are just some of the things that can help children. Some of those things are pretty cheap, but others can be expensive.

Then there are utilities. One interesting sensory need of our child is a need for showers, regularly. He loves the feel of the water on his whole body, and needs that feeling of being encompassed. If we lived by the ocean, he would spend all his time at the beach. But here in the Rockies, we have showers. Of course, living in a desert, all that water is not cheap, and we have resorted to planting low-water plants in order to save as much as we can for our son. Other children may need constant music or massagers working on their whole body, and that uses a lot of power.

Then, of course, there is emotional toll. Putting aside a “judging” public and their need to judge other’s parenting skills, it’s emotionally draining to chase down a child that doesn’t look you in the eye, doesn’t want to be touched, and try to get them to perform their tasks. This constant wearing down takes it’s toll emotionally on parents, and at one point it was believed that Autism in the family raises the risk of divorce by 80% (I question that personally). While I don’t believe it is a threat for marriages as much (particularly since both parents feel needed), it can cause stress with extended family. Add to that the Holidays, and you have quite a stressful situation for parents on the Spectrum.

This isn’t a cry for pity, or a call for social “justice” by making other people give money to support the few. It’s simply a call to the realities of having a child with Autism. Add to that the satisfaction of seeing your child perform feats worthy of a child twice their age mentally, those fleeting moments of having a child focus on you and smile, and the visions of a child who improves at school every day eventually becoming a successful contributor to society. All these things bring joy to the family, and I wouldn’t change it for the world.

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Autism’s Big News: There’s A Manual!

December 13th, 2011 | by Jeremy | autism

Dec
13

Article first published as Autism’s Big News: There’s A Manual! on Technorati.

Boy panning for gold at Mormon Battalion monument.
When my son was born, the hospital (now no longer there) offered a free book on childcare to each new parent. I used to joke that it was his “manual”, one that we could refer to when something went wrong. Well, it came in handy as a new father when I would panic about hiccups, or other minor things. The manual made all the difference in giving me the piece of mind a new father really needed.

Three years later, when my son was diagnosed with Autism, the one thing we didn’t have was a manual. Autism was mentioned in a lot of books, and under general terms, and the web was (and still is) littered with pseudo-science sites and theories based on anecdotal evidence that confused more than clarified when it came to child care. The books we were given as reference were either too expensive, unavailable, or written for psychologists in mind. It took months of research for me and my wife to sift out the truth and fact from fiction and unknowns, and judge for ourselves what was best for our son. How I longed for that manual to help me understand what it was I needed to do for my son.

Well, recognizing the need, the National Autism Center has published A Parent’s Guide to Evidence-based Practice and Autism, a manual for parents through the murky waters of Autism. It’s based on research data that has been peer-reviewed, and written for the parent in mind. And the best part is it’s a free eBook, and therefore available to everyone. I recommend you download it now.

What does it cover? Well, it explains what Autism is: a disorder. It outlines the basis of the research, treatments available, the professional findings, the importance of professional judgement in collecting data (not critical for family reading, but interesting), and how treatment can be tailored to the family. I’ve breezed through it so far, and find the information useful. I hope to have a more in depth review of the book in future.

So, if you are interested in learning more about Autism, this book is an excellent resource. It’s accurate in it’s data, written well, and free.

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Autism and Medical Check-ups

December 6th, 2011 | by Jeremy | autism

Dec
06

Article first published as Autism and Medical Check-ups on Technorati.

Great-uncle with his grand-nephew. Family can help calm a child with Autism as well.
So often we may find ourselves focused so much on one particular disorder or illness, and forget that people can still get common colds and cavities. And that’s the same for my son. I often find myself so caught up on trying to teach him behaviors, focus on speaking and spelling (he’s becoming a wizz on the iPod Touch virtual keyboard), that I forget that he has other needs too. And, unfortunately for him, he inherited my baby teeth and now has at least one massive cavity.

Because my son has Autism and is non-verbal, he can’t tell us that his jaw hurts when he tries to eat. So we need to rely on body language to help guide us. It’s not easy, because any behavior caused by continuous pain could also be caused by his need for constant deep pressure. It’s difficult to tell what the problem is, and how to best address it. It wasn’t until I started looking into his mouth that I noticed a large cavity forming.

Now knowing that my son has a cavity, a new anxiety can take hold: the dentist. People generally don’t like going to the dentist, and people with Autism like it even less. There is the lighting necessary to see within the mouth, and those who are light sensitive can have problems with that. There is the physical sensation of someone placing their fingers and objects within their mouths, and those with sensory issues may not like that. And then there is the need to sit back in a chair for long periods of time, or sit in a waiting room for long periods of time, and that’s just not fun at all. So a visit to the dentist is something I have been dreading.

Luckily, within our area there is a dentist that specializes in treating children with Autism. They are sensitive to their special needs, and can cater to them accordingly. I’m not sure how, though our first appointment is this week so I will find out soon enough. It was a relief to my mind to even find a dentist willing to make the effort to work with a child with such sensory needs.

But what about other check-ups? The dentist isn’t the only place where children with Autism can have a hard time. What about the doctor’s office? You have the same problem: long waits in the waiting room, and then again in the exam room. Then getting poked and prodded by the doctor, injections by the medical assistants (when necessary), and bright lights getting shined in places where bright lights generally don’t go (ears, eyes, and mouth among others). It’s a sensory nightmare, and getting an impatient pediatrician can make it all the more frustrating.

Again, luckily for us we have a pediatrician that understands our child’s needs, and can cater to them. Part of it is because he delivered our son, and part of it is because he works with my wife. But also, he is a very patient man who is willing to make the effort to make sure our son is comfortable.

But that doesn’t mean every visit has been event-free. One time we took our son into the Urgent Care for a quick check-up, and he was not handling the experience very well. He didn’t feel well, and wanted to run around and get his energy out. Another person, someone bringing in their grandchild for something, became disgusted with my son’s seemingly undisiplined behavior. She voiced as much, under her breath, perhaps in hopes what we wouldn’t hear, or perhaps wanting us to hear. I, of course, heard, and just when I was about to explain to her our situation, we were called in. So, unfortunately, I was unable to educate this person to the trials of visiting such a structured environment with a child on the Spectrum, and what kind of effect it has on his behavior.

So what is it about the office that makes it so difficult for a child with Autism? Well, children with Autism generally (not always) have more neurons in their brain than most neurotypical children. These neurons remain active, and often do not prune at age 2 like most neurotypical children. As such, when they get a sensory message along those neurons, all those extra neurons fire at once. Imagine, for a second, someone turned on a strobe light in the room you are in, turned up the stereo and television to a very loud setting, and ran them both at the same time. Then add some sandpaper for the walls, gravel floors and seats, and painted everything in bright, swirling colors (imagine the 60′s, but brighter). The strobe lighting represents the minute flickering of the florecent lights. The stereo and television reflect a sensitivity to hearing, and hearing multiple conversations at once. The sandpaper walls, gravel floors and such represent the sensitivity to touch. What is perfectly normal to a neurotypical child is amplified x number of times over for a child with Autism. And add to that a long, unpredictible wait (healthcare professionals can and often do get behind in their schedules), and it becomes almost intolerable.

So what can you as a parent do to help relieve the situation for your child? Well, often times finding a provider who is aware of your child’s condition can be the best step. They will do their best to schedule you when it’s most convenient, and results in the shortest wait time. Next, if your child has a sensitivity to light, often sunglasses or dimming the room’s lighting can relieve the tension. If sound is a problem, giving them something to focus on, such as music with headphones, can help calm them down significantly. Some children need something to chew on (gum, a hose, plastic toys, something), while others just need someone to give them bear hugs (deep pressure on the skin and muscles). It may be any one of these, or a combination, which is why as a parent we are the best judges as to what works and doesn’t work for our children. That being said, if you work with occupational therapists, they may have ideas you can try.

So if you perhaps see a parent with a child that seems to be behaving with no regard to that parent, it’s quite possible that child has Autism. Offer to help if they are obviously in stress, otherwise just a smile and a nod to let them know you understand works wonders. Parents are often more comforted by the nod than by anything else that you can do.

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Schools, Teachers, Autism: Working with the Specialists

November 18th, 2011 | by Jeremy | assessment, autism

Nov
18

Boy with Autism writing on a magnetic tablet.
Article first published as Schools, Teachers, Autism: Working with the Specialists on Technorati.

This week we had our second (and my first) parent-teacher conference with my son’s first grade teacher. She just started, has a Master’s degree in Special Education, and is very excited to be working with her group of students. But this year, so far, she has been struggling with my son. That struggle has not been because of his inability to learn, but rather her struggle is trying to find ways to connect with him and teach him.

We discussed how we work with him at home, and what they see as a barrier in my son’s development. It seems that he is highly visual and tactile, and needs a lot of deep pressure stimulation to calm down enough to perform in class. We talked about strategies for working with him, ideas that would be tried over the next couple of days, and what we can do at home to help him focus and work on learning.

In the past I had talked about how I get defensive about my son and the work we do with him at home. But it took a good talk with his Kindergarten teacher and the school psychologist (who tested his IQ and was frustrated, because there was no way to more accurately test him until he is more verbal) to understand that they were there to help us help them. They were the experts in special education, behavior techniques, and tools necessary to teach him, but needed us as parents to use their methods to reinforce the lessons. It seems odd to say this, as I teach for a living, but we as parents always want to “know what’s best” for our children. And sometimes, we don’t.

Perhaps that is why so many parents are now quick to blame teachers and schools for their children’s failures. Instead of working with the teacher, they fight them for “judging” their child. It’s frustrating for teachers, coddles children into thinking they don’t have to work if they just make a big enough stink about every little grade, and parents are teaching their children that being a bully will get you what you want in the short term.

So what can we, as parents, do to help our children develop and learn? Something I learned from my parents, you go to the parent teacher conferences with a goal: learn what you can do at home to encourage learning. It’s more than just forcing your children to do homework. It requires discussion about the topics, making games that reinforce learning concepts, and instilling a desire to read.

When we came back from our consulation, we came back with specific goals:

Work on writing, spelling, and spacing
Work on addition (mainstream 1st grader skill)
Work on sorting into categories and groups
Work on relationship between verbs and their concepts
Practice sharing and taking turns
Practice coloring
Find a deep pressure sensory solution to help him focus

Some of these skills may seem pretty basic for children in first grade, but they are common problems children with Autism have. But the one thing that got me excited is the fact that my son is getting to the point of being mainstreamed in at least math. It will make his uncle proud, I’m sure, and it thrills me to know that he is focused on learning as much as he can. And with our take-aways from the meeting, we have a way forward to help him.

Autism is a scary business, particularly if you are doing it alone. Having the support of your child’s teacher and the school staff is something you definitely need. Add into that a supportive family and, if possible, religious or social community, and you can see dramatic changes in your child’s development.

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Perspectives in Autism

November 14th, 2011 | by Jeremy | autism

Nov
14

A boy in the winter garden, his back to the camera.
I find it funny that other parents who hear or notice that I have a child with Autism get emotional. They try to empathize, or feel sorry for me, and often wonder how it is we as parents manage to function with a child on the Spectrum. The truth is, we don’t know, because we don’t know any different,

I’m writing this post after thinking about perspectives. My train of thought ran thusly:
1. A picture of the Utah desert, with it’s beautiful sandstone formations and Delicate Arch.
2. A flashback to a picturesque scene of a desert in China from a favorite movie.
3. Now wondering if one could tell the difference, particularly if only given an artistic close up shot of the sand.
4. A realization I had after living in Germany for a couple years: people and places are basically the same wherever you go.
5. Does that apply to parenting?

You see, I adhere to the old Stoic philosophy that nothing in life is unbearable, and that our trials are individual in that they happen to us and not someone else. Should we receive a trial or stumbling block, we adapt to the changing circumstances as best we can by learning and adjusting.

As such, while other parents complain of very talkative children that tend to say too much, we are eager to hear any word from ours. While other parents are worried about performance in school and doing homework, we concern ourselves with repeatedly teaching our son life skills so he can function as a normal adult when he grows up. It’s all about the perspective.

So, for this reason, I don’t consider myself an overly tried parent. I have very well behaved children that occasionally melt down at inconvenient times, but otherwise are loving and excited to see the world. I look for the positive side of his gifts with his natural mechanical mind and quick grasp of just about any concept (though I would like it if he didn’t try to challenge those concepts for validity quite so often).

Now, there are many parents out there who have a child on the spectrum at is more severely challenged than my son, and I realize that. My problems are my own, and I wouldn’t want to wish them on anyone else, nor would I want anyone else’s problems. My focus is on my family and their welfare, just as anyone else’s focus should be on their families. My trials are my own, and for that I am grateful. To have to deal with the trials of other families on top of my own might stretch my abilities.

But then, “Nothing happens to any man which he is not formed by nature to bear” (Marcus Aurelius Caesar).

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Changes in Routine: Challenges with Daylight Savings

November 11th, 2011 | by Jeremy | autism

Nov
11

Article first published as Changes in Routine: Challenges with Daylight Savings on Technorati.

Sleeping boy with dog Daylight Savings is great for those who look forward to daylight when they get home from work, but everyone dreads the time change in the Fall and Spring. Do we add or subtract an hour? When exactly does it happen? How will I catch up on my sleep?

These are common questions that I have heard from friends and family. But things are a little different with a child on the Spectrum. For those who are not aware, most children like routine, rules, and order (even if they sometimes don’t follow them). But children with Autism need their routine. Changes in the routine can send some children into meltdowns, others become wired and are unable to cope with what would otherwise be a normal daily routine. Parents become frustrated, and often lose sleep as their children have a hard time adjusting to a time change on the clock.

For instance, my youngest son, regardless of what the clock says, will almost always wake up at 5:00 AM. Now that Daylight Savings has changed, it is now 4:00 AM he wakes up, ready to start the new day. It doesn’t matter what time he goes to sleep because he still wakes up early in the morning. And instead of taking days to adjust as typical children, it’s weeks.

My oldest, who likes to sleep in (relatively, you understand, as he gets up by 7:00 AM), now gets up at 6:00 AM, and has to wait an extra hour for the bus to arrive. Because of this breach in his schedule, he becomes hyper and destructive. The change in the routine has disrupted his life to a point where coping is all he can do until he adjusts to the new time change.

Now, I’m not sharing this to complain about Daylight Savings, but rather to share a small window in the life a child with Autism and how different it can be for the parents. It’s something to keep in mind when major changes happen in one’s life, so you can better prepare a child for that change.

For every change in our family routine, we prepare our children as best we can. For Daylight Savings, we try to adjust the children’s sleeping patterns ahead of time. For vacations, we prepare with small road trips ahead of time. For school schedules and breaks for the Holidays and Summer Vacation, we try to fill their time with activities that distract them from the change in routine.

It’s all a day in the life of a parent with a child on the Spectrum.

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