Subscribe to this Blog
Today's Blogs
    The Checkup:

When Something's Not Quite Right

A big welcome today to Mike Snyder, who's joining On Parenting as a regular guest blogger. Mike worked many years alongside me at washingtonpost.com and is known in our newsroom as NASCAR man. Always a creative sort, Mike handed candy bars wrapped in birth announcement paper when his daughter was born 6 years ago. He's now taking a parental education journey through early childhood development with his four-year-old son.

By Mike Snyder

It was after my son's fourth birthday in late January that I began allowing myself to be honest about my deepest fears about his development. During his annual physical, when age-appropriate questions are asked, my son appeared to be lagging, as he had in previous years. He still wasn't potty trained (not for lack of sincere encouragement and using every method we could think of since his third birthday). He still couldn't fully dress himself. He couldn't tell the nurse practitioner how old he was.

Physically, otherwise, he was the picture of health. Nothing concrete was recommended regarding his development, but the potty training and dressing himself were noted as concerns. The age question was chalked up to shyness, but I think deep down, I knew better. My son had always had some difficulty in answering direct questions, whether he knew the answer or not. Also, his speech was often unclear and unintelligible to strangers, although my wife, his big sister and I - along with his day care provider - could understand him.

I probably should have heard the ringing alarm bells in my head earlier. But they rang loud and clear now. And yet I still didn't take immediate action.

We decided to up the ante on the rewards for potty training - a trip to Chuck E. Cheese and a Thomas the Tank Engine toy that my son picked out himself.

We also enrolled him in a soccer class that met Sunday afternoons. After initial interest (the first lesson only), he refused to participate to the point he didn't want to go at all. I didn't want to force it on him, so we stopped going after four weeks.

My son had always been a bit of a loner and didn't like big groups unless he was very familiar with everyone. Last Christmas, he put himself in time-out because the excitement of a houseful of family, some visiting from Colorado, was too much for him.

I always thought his personality traits were okay. My son has always been a little on the quirky side. He's devishly charming, also obstinate and headstrong. He's got a wonderful smile and a musical laugh and loves playing with Thomas the Tank Engine toys. And every kid's different, right? No two alike. They don't necessarily develop the same skills at the same age.

My son had been a little late in speaking, starting at around 18 months, but used three-word sentences almost immediately. (Most of them began with "I want ... ") Also, English was a second language for his private day care provider. She spoke well, but perhaps that was part of the delay in development, I rationalized. We wanted to get him into a structured pre-school program, but there was still the potty-training issue.

I think it was a series of birthday parties during the spring months that really convinced me to investigate further. I observed my son's solitary play in a room full of his peers and his unresponsiveness to questions again and again.

In late March, I talked to an acquaintance I met through my NASCAR connections. She and her husband have a son with autism. She urged me to take my son for an evaluation. I did some reading on the disease on the National Institutes of Mental Health Web site. I didn't think my son was a severe case, but there were enough associative behavioral symptoms to scare me. I immediately made an appointment to consult the matter with his pediatrician. I needed to do what I could to help my son and conquer my fears that he might not be "normal."

The pediatrician told me that it was good that I brought my son in. She said parents are the most attuned to their children and my concerns should be addressed. She referred me to a specialist in childhood development, an associate of Childrens Hospital, who unfortunately was booked up for several months. She also recommended I contact Fairfax County's Child Find program.

I contacted Child Find, which works on early educational development with 3-to-5-year-old preschoolers. After a brief initial phone interview, an introductory screening appointment was made for May 1.

Next Week: The Initial Screening.

By Mike Snyder |  October 23, 2007; 7:00 AM ET  | Category:  Child Development
Previous: Talkin' Toys | Next: How Much Do Your Kids Wash?

Comments


Wow, Mike, I share your pain and worry. Our 3 and 3/4 year old daughter was diagnosed with High Functioning Autism (HFA) a little before her third birthday. She did not talk till very late 2s and still only engages in parallel play. She is very interactive with her parents and some of the day care staff. She does enjoy the kids and recongizes them but prefers to play by herself. She doesn't quite understand a lot of open ended questions (like -What makes you happy?). Language acquisition is slow. She still talks in mostly 2 and 3 word sentences with an occasional longer sentence. In the beginning, she mostly learned set sentences like the I want... Now she says her own but does tend to recite whole TV shows and loves to act them out. Her play skills are completely normal and she is cognitively normal. In fact her academic information, letters, numbers, counting, colors and shapes is right on target and a little advanced. First let me say Child Find is awesome. Second if your son is diagnosed with autism or a noncategorical delay, he is qualified for the preschool in the public schools. My daughter is in her second year of the preschool. It is an awesome preschool. I honestly don't think you can pay for a better one. Consider yourself very lucky to get into. Third, I want to stress you are not alone. This is a really horrible journey but the early intervention will help him a ton. I wish you had him evaluated early. Don't be afraid of a label. It is only necessary to get him the services he needs. For all you know, he may go into kindergarten completely mainstreamed. I can tell you that your son sounds very mild as my daughter is too. The important thing to remember that in this mild form of autism, it is more of a difference then a disability. BTW, my kid is having a lot of trouble training too. Really, that is the least of my worries. I tried the American girl doll bribe.:) So far, she is not biting.

Posted by: foamgnome | October 23, 2007 7:55 AM | Report abuse

Mike, I wish Leslie would run your story until it's done. I don't want to have to wait until next week to find out what happens with the screening. Foamgnome is right that you are not alone, and with ever increasing awareness there are and will continue to be more options and alternatives.

On a sort of related note, I caught a few minutes of Jenny McCarthy's interview on Larry King a few weeks ago. She seemed to be saying that diet makes autism go into recession. I don't know much at all about autism, but this didn't sound right to me. Does anyone familiar with the condition know whether she's to be believed? (I meant to look into it at the time but it's been crazy busy.)

Posted by: WorkingMomX | October 23, 2007 8:07 AM | Report abuse

Whoops, this isn't Leslie's blog, it's Stacey's. So, here's my plea to Stacey to let Mike's story run until we know what happens.

Posted by: WorkingMomX | October 23, 2007 8:07 AM | Report abuse

Go to http://www.autismspeaks.org/ and http://www.cureautismnow.org/site/c.bhLOK2PILuF/b.1021889/k.BFD8/Home.htm for more information. There is a belief that a gluten-free diet can be helpful, but my sister has two autistic sons and it was not helpful in their circumstance.

There is a very broad spectrum of autism, from Pervasive Developmental Disorder (mild) and Asperger's syndrome up and through very strong autism symptoms.

good luck

Posted by: NYMOM | October 23, 2007 8:18 AM | Report abuse

Thank you so much for writing this wonderful guest blog. My heart goes out to you as you travel this journey. There is nothing harder for a parent than finding out something may be "wrong" with their child. Trusting your instincts, as you are doing, and just loving your child with all your heart will get you through. We had a huge scare with my son a few years ago and our life totally changed but we got through it. My son was diagnosed with bone cancer at age 2. After 8 months of high-dose chemo and aggressive surgery, he is cancer-free. But, he lost 1/2 a leg so he will use a prosthesis to walk for the rest of his life. There are also some life-long side effects from the high-dose chemo. So, this parenting job changed a lot for me in the last few years and some days are overwhelming, but that's true for all parents. Raising a special needs child is a different ball of wax but Mike, you really seem to have it together and it sounds like your son is in great hands. And, he does sound like a very neat kid!! Best of luck to you.

Posted by: PT Fed Mof2 | October 23, 2007 8:40 AM | Report abuse

I'm a regular lurker here and at On Balance, but this is the first time I've actually been motivated to comment. Put my DD in your entry instead of your son, and it describes our situation almost exactly, down to having to wait several weeks (vs. months, because of a cancellation) to see a specialist at Children's, and going through the evaluation process at Child Find. DD is now at one of Ffx County's preschool programs and LOVING it. It's only her 3rd week, so the honeymoon may wear off, but she has done very well thus far. Her only diagnosis, which was tentative, is ADHD. Sometimes I've wondered about Asperger's, but none of the professionals have suggested that.

All I know is I'm grateful to DD's first preschool, who referred us to Child Find. At the beginning of the school year, we wondered whether DD would be ready for Kindergarten, since she still wasn't fully PT'd and had numerous behavorial issues. Just in the last month, she's gotten over the PT hurdle, bless her soul, and we now think she'll be fine to start kindergarten at her neighborhood school next year.

I look forward to the rest of your story.

Posted by: BeenThereDoingThat | October 23, 2007 8:59 AM | Report abuse

This is a great blog! There is nothing scarier than realizing your child may have a problem and it isn't always easy to take the next step. I noticed my 5 year old was a little different before her 2nd birthday. She just had a few odd behaviors but was really bright and it was easy to rationalize her behavior away. Even my Pediatrician kept telling me to wait and see! She was not evaluated until this year when I finally took the initiative and made a "self-referal" to the Child Development Unit at Children's Hospital. It took 8 months to get an appointment and they did not diagnose her with anything but were able to refer us to a therapist to deal with her emotional outbursts and an occupational therapist to help with some sensory issues. Now that she is getting the help she needs, she is like a new kid!

Posted by: Momof5 | October 23, 2007 9:06 AM | Report abuse

Mike,

My son is 2 but I can see myself being able to write a similar story in 2 years (He didn't say mommy until 22 months, but at 25 months, he's speaking in 3 and 4 word sentences).

He was diagnosed last week with sensory processing disorder. He avoids crowds because they are unpredictable. He doesn't like touching (bear hugs are ok, but nothing gentle or random), he hates noise. We are starting with an Occupational Therapist now.

I look forward to reading the rest of your story.

Posted by: MDemyan | October 23, 2007 9:08 AM | Report abuse

Is there such a thing as post traumatic stress disorder for parents who have gone through the process of getting their child evaluated for a developmental disorder? Reading this entry made me physically feel the stomach-churning fear and hopeless uncertainty again that I felt when my son was diagnosed with autism nearly four years ago. It took me a long time after that to come to terms with the fact that this is not something we'll get some help for and then not have to deal with anymore--it's a lifelong struggle and a daily challenge.

At the Baltimore Autism Speaks walk on Sunday, the Chesapeake chapter of the Autism Society of America had fliers with a slogan that I loved--"Don't Wait and See." It's always best to get concerns checked as soon as you have concerns--the worst that will happen is that your concerns will be unfounded and you will have wasted a bit of time and maybe some money. No great harm in the long run.

I *do* know a few people who have seen really good changes when they tried dietary interventions, either a gluten and casein free diet or the Specific Carbohydrate Diet, but most people I know who have tried this (including us) haven't seen any difference. And in our case, in spite of early intervention, a good public school program, lots of time with private speech therapists and behavioral psychologists, and teaching ourselves to do some ABA therapy (which our county doesn't support and we can't afford on our own), we've seen little progress in our son. When he was diagnosed at two and a half years old, we all thought he was only mildly affected but now it's clear that he is profoundly disabled--still almost completely non-verbal, behavioral problems (aggressive, self-injurous), sensory problems, etc. And I'm sure no one with younger kids on the spectrum wants to know that at six and a half years old, he's still not potty trained! But he is loving and silly, stubborn, an excellent problem solver, and overall fun to have around.

I too look forward to reading the rest of these entries. It sounds like your son is one smart kid if he has learned to to put himself in time out when he feels overwhelmed!

Posted by: Sarah | October 23, 2007 9:30 AM | Report abuse

Wow - there are so many of us out the same situation. At 3 and 1/2, our pediatrician recommended our son (now 5) get an evaluation. He was first diagnosed with PDD-NOS, but after further evaluations they found he had only a few markers for autism spectrum, but he did have significant developmental delays in speech, social, self-help, fine and motor. After almost two years of weekly speech and occupational therapy, Aidan has "graduated" from speech and is almost finished with OT -- while he still does some thing different than other kids, he's social and warm and totally at age-level (even a bit ahead academically). He's now seeing a pyschologist (actually, the whole family is) to help with some lingering behavioral issues. Less than a year ago, he couldn't button his shirt -- now he's been taking piano lessons for six months and can play fairly complicated music. Hearing "autism" the first time was scary, and this has been a difficult road, but there are so many amazing professionals out there to help. We are grateful every day for what they have done to help our family and our son.

Posted by: Aidan's mom | October 23, 2007 9:35 AM | Report abuse

Just to echo the comments of others...Organic Kid was diagnosed Asperger's in Kindergarten. We've tried gluten free diets with no discernable results, but have always had a primarily organic diet (go figure, if nothing else, eating organic keeps me employed!), so that isn't an issue either. Organic Kid is 9, which seems a bit older than other posters here. One thing I've seen over time, with Asperger's at least, that since there are no congnative issues (she's actually gifted in most academic areas), she can learn how to function in those social arenas that she doesn't understand intuitively. We've done lessons and modeling behavior on how to introduce yourself, how to have a two-sided conversation, appropriate physical space for different relationships and locations, that sort of thing. She still does have problems in certain settings, she will still melt down if something throws her schedule out of whack, and she always has to think for a bit before approaching social situations outside of home. It's interesting to observe; someone will approach her, and she'll listen, and there is a delay that is noticible to others before she responds, but she's learned to say "I had to think about that, and..." as she's responding. With Asperger's, at least, it seems like simply growing up and being able to learn to mimic other's actions helps more than any diet or drugs could ever do!

Posted by: Organic Gal | October 23, 2007 9:46 AM | Report abuse

Our daughter is 4 and is on the spectrum. If the person you are going to see at Children's is Charles Conlon, he has a good reputation but a long waiting list. An alternative is the Kennedy Krieger Institute, which is a child developmental clinic affiliated with Johns Hopkins in Baltimore. You might get in to see them sooner. They have a Center for Autism and Related Disorders (CARD) that specializes in screening.

Our pediatrician and the first neurologist who saw our daughter said she wasn't autistic. But what we found out was that a 15 minute office visit is NOT enough to rule out the milder cases (like PDD-NOS). Kennedy Krieger did a 1 1/2 hr screening that looked for specific behavioral deficits.

Child Find is not great at diagnosing autism, no matter what they tell you about how experienced they are at dealing with children. They were adamant our daughter was not autistic b/c she is not a "classic" case. They also told another woman I know that it was too soon to tell with her 2-yr-old even though other professionals (two independent opinions) were able to diagnose it.

Posted by: YHW | October 23, 2007 9:58 AM | Report abuse

Child find does not diagnose autism. But they will get you the right referral information to get into the publich preschool. They also do a lot with speech and occupational therapy. I still think they are a great first step. Our daughter was diagnosed with autism by a pediatric neurologist at Children's Hospital. Her developmental pediatrician spent an hour with her. She was also from Children's Hospital. We did go to an autism center in MD but did not find them very helpful. More of a resource place then a diagnostic center. But Child Find told us right off they just diagnose for developmental delay that they would not diagnose autism for us.

Posted by: foamgnome | October 23, 2007 10:12 AM | Report abuse

What is PDD NOS?

Posted by: WorkingMomX | October 23, 2007 10:22 AM | Report abuse

Posted by: Anonymous | October 23, 2007 10:27 AM | Report abuse

Hi Mike,

I went through the same thing with one of my children. My ex wife and I had been aware of but but not fully willing to admit that our lovely, beautiful child was just a little bit different. She didn't sleep through the night until after two years of age, cried often and was slow in developing cognitive and language skills.

My exwife was adamant about not taking her to be tested because she feared that as a special needs child she would be stigmatized by other children. After throughly discussing the issue I was able to convince her that addressing the issue as early as possible would help us and her to mitigate whatever it was that effected her plus I argued, if the issue wasn't addressed the effect she was worried about would have played a much larger role in our childs life.

So,we went to Kennedy Krieger in Baltimore and had our child evaluated and the child found to have tactile issues as well as some deficiencies in lerning and development. It wasn't called autism but it seems to be related. After the diagnosis we were able to enroll her in a special needs school(she was still only three)and she recieved OT(occupational therapy)dealing with the issues she had.

Her speech was somewhat garbled, she only liked certain toys and had to have these articles with her always or would become inconsoleable and she also needed familiarity to be comfortable; familiarity with scenery, toys, clothes and people and food.

To make a long story short, our child was only in the special school for six months before the wonderful people there helped our child cope and tested out and is now enrolled in a private mainstream catholic school. Both parents and our child were taught coping methods to deal with the issues and the child is now mainstream and is not deficient in any areas. Our child is still a little fussy and particular about some things but has made an incredible amount of progress and is quite self sufficient.

What I can say to all the parents out there is to act early and don't BS yourself. If you see something thats not the way it should be than act on it; take advantage of all the services available to you.

I am a firm believer that the human brain has incredible adaptive powers and much like a stroke victim being able to reroute circitry to regain speech, kids with autism and autistic related issues can have those issues mitigated or completely negated by acting early and with great intensity.

My heart goes out to all of you and your families. Be strong and be active; there is a true champion inside all of these children just waiting to come out.

Posted by: Matt | October 23, 2007 11:21 AM | Report abuse

I do not mean this as a criticism of the blogger in particular, but a question as to why this is so difficult a situation.

Is it possible that part of the reason these things aren't picked up sooner is because toddlers are allowed to act babyish longer? In some circles it is considered normal, even desirable for developmental reasons, for a child to remain in diapers, use sippy cups exclusively, speak in babytalk, and ride in strollers instead of walking, until they are four. If everyone is doing this, it must make it harder to tell the delayed child from the rest.

Posted by: di | October 23, 2007 11:24 AM | Report abuse

I would also like to read the rest of your story before next week.

Your son is lucky that you are trying to do what you can to make sure he's okay. My friend's DD (3) has been showing some signs of some problems since she was 1, but friend is in total denial. Despite being advised by two childcare professionals to talk to her pediatrician about being evaluated, her response is simply that these people don't understand her daughter because she is "gifted." I feel badly for the child because I know how helpful early intervention can be, but there's nothing anyone else can do. The poor child is terrified of everything, doesn't want to leave the house, and melts down frequently in any kind of "new" situation.

Posted by: nova | October 23, 2007 11:25 AM | Report abuse

"In some circles it is considered normal, even desirable for developmental reasons, for a child to remain in diapers, use sippy cups exclusively, speak in babytalk, and ride in strollers instead of walking, until they are four. "

hmmm... I'm a pretty active sahm, and this is a new one on me. My DD is 2.5 and has trouble feeding herself with a spoon (it's her only real delay, and we're working on it- she flips it upside down before she puts it in her mouth), and I get funny looks about *that*.

Posted by: reston, va | October 23, 2007 11:29 AM | Report abuse

My 2 1/2 yr. old son was recently evaluated by Child Find in Fairfax County. He was determined eligible for the county's preschool program and started a few weeks ago. I can't tell you how happy we are to have him in this program and how good the teachers are. In just a few weeks, my son is more verbal and sociable. He still has a long way to go, but I have hope that he will be mainstreamed when he gets to kindergarten.
I was afraid of labeling my son with autism, but I now realize it is a spectrum disorder and affects people differently - from very mild to severe. Early intervention may help 'cure' children.

Posted by: momof2 | October 23, 2007 11:46 AM | Report abuse

My 3 1/2 year old son was suspected of being on the spectrum. Dr. Calbert of Children's Hospital didn't think so but said could be PDD NOS and ADSD. He is in Child Find program and has gotten better over the past 6 months though he is still 10 months behind in speech and fine motor skills. I personally think that there is a lot of misdiagnosis out there. Kids develop at different rates. Unless there are some really odd behaviours, I wouldn't worry much.

Posted by: daddy2 | October 23, 2007 12:04 PM | Report abuse

Di, I've never seen any of these "circles" you wrote of--it's certainly not the case in my experience that people find it acceptable to have toddlers act babyish until they are four. Rather, I think the reasons these things aren't picked up sooner is because a) it's your child and it's hard to see what's "different" when you're so used to the behavior that you don't think of it as a symptom of a disorder so much as a personality trait (i.e. not pointing, "stimming" behaviors, lining toys up instead of playing with them--these things never really struck me as odd about my child because it was something he had always done; outsiders were better at seeing these things); b) most pediatricians, who are the first people you turn to when you have a developmental concern, are so used to a huge range of normal behavior and only see your child for 15 or 30 minutes at a time that they almost invariably tell you to "wait and see." This comes in all kinds of forms--either "he's a boy/second child/not around other kids much so he's just not talking as early as other kids" or "well, yes, it's not really typical to have such low self-help skills, but he's so far developed in other areas that I think he'll catch up soon" or "but he's so bright, I'm sure there's nothing wrong with him!"; c)plain old denial--you come up with all kinds of excuses for the delays you see. In our case, our son had numerous infections throughout infancy and toddlerhood and spent most of two years with near constant ear infections so when he didn't start speaking on schedule or walking by 15 months, we attributed it to his level of health. And you wouldn't believe the number of people who told me "But Einstein didn't start talking until he was five!" Or four. Or three. Or whatever. That number seemed to change a lot. As if not speaking is a sign of genius. I say Einstein could have used some speech therapy!; d) kids really do all develop at different rates and what is normal for one child might be a sign of a developmental delay in another (that is, the pediatricians aren't all wrong) and e)the length of time it takes to get evaluated and get a diagnosis--we first went for an evaluation when our son didn't start talking within a couple of months of getting ear tubes put in at 18 months old. The evaluation at that point only showed a speech delay, so he had ST for a year. He never "took" to the ST and never progressed, so we went through the evaluation process with a developmental pediatrician (who was useless--she was looking for one answer to two issues, the health problems and the developmental problems; turns out there were two answers, not one), got tested for I don't even know how many things, and finally went through another EI evaluation and a second evaluation at Kennedy Krieger, so it took over a year from our first real concerns to get a diagnosis. That's not unusual. The think with developmental delays is that if you have a developmental "age" of 14 months when you're 18 months old, that's not really a problem. But if you have the same 14 month developmental age at 30 months, that's a huge problem. Many or most kids with autism reach the first year milestones on schedule but only start to fall behind when you start measuring other milestones that aren't things like turning over, sitting up, getting a first tooth, etc.

Posted by: Sarah | October 23, 2007 12:10 PM | Report abuse

There's a really sad situation in our neighborhood, a friend of mine has a child with developmental problems, but the parents are too chicken to address it. They finally got the child to one single doctor, but when I questioned them about second opinions, they refused to "go there." They were accepted at a really good pre-school in the special ed program, but are afraid to send their child outside of the house. I'm about 40% convinced that the child's only problem is that they step outside the house except on weekends. It's frightening what control bad parents have on kids and a bad SAHM is like a prison guard to a kid like that.

Posted by: DCer | October 23, 2007 12:11 PM | Report abuse

My second child started using words and sign language at 8 months and by 11 months knows about a dozen words. That's early, really early, but if your kid isn't communicating in ways Grandma or the aunts and uncles can understand by 1 year then it's something to talk to your pediatrician about without delay!

Posted by: DCer | October 23, 2007 12:14 PM | Report abuse

Yeah, my sister's kid had some 'issues' (not the least of which is my BIL), but they were afraid of any type of diagnosis (my BIL didn't want anyone to think HIS kid wasn't spectacular, so a diagnosis of any kind would have been horrible). He's 7 now, and I think not that long ago they started to really admit that there might be something to get checked out.

It's so amazing the advances in the last 10-20 years about how kids can get helped earlier and earlier and how they can then become 'typical.' But it's sad when parents don't want to do anything about it when they see something different.

And, WorkingMomX, I saw the interview with Jenny Mcarthy - and it was just horrible when she was sitting there telling Larry King how it's got to be the thimerasol in the vaccinations that's doing this to our kids. He just sat and listened and she's completely WRONG. There's been no thimerasol in vaccinations for 6-8 years, and rates of autism are climbing even more now.

Posted by: atlmom | October 23, 2007 12:21 PM | Report abuse

Interesting piece. Looking forward to part two. I have a two-year old daughter on the spectrum, who does not appear to be high functioning. Only time will tell.

For any who are interested, here is a link to a wonderful 90-second film entitled 'Magical Thinking' about a little boy with autism. In it's own, abstract way, I think it is still one of the best pieces of work on the subject I've seen yet:

http://www.depict.org/films/1540/medium/

Hope you will find it thought provoking.

Posted by: snortemis | October 23, 2007 12:23 PM | Report abuse

WorkingMomX: PDD-NOS is "pervasive developmental disorder not otherwise specified". It's a term you would use for a child who has enough autistic symptoms to warrant concern and treatment but doesn't fit the complete autistic profile. Because it is a recognized disorder, therapy and assistance can be obtained via insurance or early intervention programs.
I didn't see the Jenny McCarthy interview but bear in mind that her main claim to fame is being Playboy Playmate of the Year. That doesn't mean she's stupid, but she didn't get on TV, magazine covers by being smart.

Posted by: AngelaA | October 23, 2007 12:39 PM | Report abuse

Thanks to all of you for your thoughtful comments and requests for more. Mike and I have talked about him doing this series of blogs for a long time as we believe that developmental delays and the parental issues around them are affecting a growing number of families. I know many of you are anxious for the rest of the series. Rest assured, it's coming next Tuesday, and the Tuesday after that, and so on. We hope Mike's weekly installments continue to encourage you to share your experiences with us and with each other.

Posted by: Stacey Garfinkle | October 23, 2007 12:44 PM | Report abuse

"your kid isn't communicating in ways Grandma or the aunts and uncles can understand by 1 year then it's something to talk to your pediatrician about without delay!"

actually, average first words are spoken at about 12 months. Communicating with Grandma by one year is *not* a milestone anyone looks for- it's really quite early.

Posted by: va | October 23, 2007 12:47 PM | Report abuse

This could almost have described my son - slow to talk (although he had his own odd language that I am not sure had real words - I mean that sounds didn't seem to correspond to any specific thing, he was just sort of talking, not communicating), very slow to toilet train (~3 1/2 or later), socially backward, although intelligent and physically adept. Generally was in his own world. Had trouble in school, was in special ed for a few years. Had trouble making friends. Barely made it through high school with his grades, although his SATs were good. The friends he did have, some of them ended up in jail. I was really worried about him, as you can imagine.

Then when he got in college, he really blossomed. He found a good bunch of friends, joined a fraternity. I was amazed that, at whatever part time job he got, his supervisors thought he was great and quickly promoted him. He should graduate this year - will be 5 years total, not too bad. He has a wonderful girlfriend now. He's really doing great and I think will have a great future in work and otherwise.

This is just to say that, well perhaps he was slightly autistic, and perhaps he would have been better off to get some help about it when he was small. But he is working out fine in the end. So don't lose hope if your child seems different.

Posted by: Catherine | October 23, 2007 12:56 PM | Report abuse

AngelaA: you're correct, but also, she has written several books (comic) about mom-hood, pregnancy - etc (belly laughs is one of the titles). She is VERY bright - she is VERY funny.

I just don't agree with her on that particular issue. And you know how easy Larry is when he interviews anyone. It just irks me that the misinformation is still out there - nearly 10 years after the fact.

Posted by: atlmom1234 | October 23, 2007 1:01 PM | Report abuse

Child Find is terrific. They will give you all the support that you need during the pre-kindergarten years. Their help for our child was wonderful.

However, once our child got to elementary school, it was totally different. Child Find services stopped when our child entered school. Child Find sent a report to the school, and it was up to the school to act on it. Most of the teachers and administrators tried to avoid helping us get services, even when we asked. We had to go outside the school system for the help our child needed. This was Fairfax County, VA.

Be an advicate for your child 24/7. Never give up. You and your child will both make it. Best of luck.

Posted by: trr2 | October 23, 2007 1:15 PM | Report abuse

I am sorry, did someone here actually claim Jenny McCarthy is bright? In what alternate reality??? Isn't she the nutjob that thinks her kids is an indigo child and she is a crystal person, or something like that???
Bright? Maybe, just maybe, compared to Paris Hilton.

Posted by: Catwhowalked | October 23, 2007 1:25 PM | Report abuse

For whatever it's worth, my sisters step-grandson sounds a lot like your little boy (slow verbal development and PT issues), and at the age of four began attending a Ffx County special program and made tremendous progress in a short period of time. His development is now age appropriate. Good luck.

Posted by: Barbara | October 23, 2007 3:03 PM | Report abuse

Kick ass article, can't wait to see the rest.

I think you did all the right things- kids DO develop differently in their own ways and it's much better to wait and see awhile rather than just leap to everything and make them go through tons of tests and drugs from paranoia. When you really saw it, you really did something about it. I don't think the kid was suffering.

And I like your story because it shows that autism or autism spectrum problems does not mean a person can't live functioning and fulfilled.

Posted by: Liz D | October 23, 2007 3:40 PM | Report abuse

I'm going to enjoy this Tuesday series. My 15-y-o has a diagnosis of high-functioning autism, so our family is much further along the way to adulthood, and our issues and concerns are different than most of you with younger children. Communication Handicap classes are a long-distant memory for example.

It does get easier with time. Our kids will find their strengths and skills. They bloom and make us proud of their accomplishments. My boy's gift is music, and I'm beginning to see glimmers of interest in *composing*, not just performing.

I probably won't have much to add to the discussions since I'm in CA and our school systems and county/state resources are quite different. I can suggest a few books that helped me with the emotions of learning I had a "different" child.

The diet thing works in a subset of autistic children. When it works, it's a terrific change, but it had no effect on my son. Other therapies work for other subsets, so my only suggestion is to try anything that makes sense to you, and see if it helps. Same with mercury poisoning, from thimerosol or other sources, I suspect. Some kids are more vulnerable to particular triggers, but the majority don't seem to be.

The best science seems to indicate that the causes are a combination of genetics and environmental. But I've never been all that focused on what caused my son's autism. Hey, I can look in the mirror and run guilt-trips on myself, but what good will that do my kid? I have always wanted to know what can we do for him *now*? What are the next steps? How do we plan for his future?

Two tricks that DH and I have learned over the years of dealing with our school district.
1 - Put it in writing. Everything! If you phone the school, they can take as long as they like to act. If you send a letter requesting evaluation/IEP meeting/etc, you have now started the clock ticking, and the school district has to respond within the time limits of federal law (google 'IDEA' for specifics).
2 - Bring a recording device to meetings; tape recorder, digital recorder, something! When we didn't do this, we had people telling us bald-faced lies to our faces, but when we recorded meetings, no one would lie about our kid's rights to services, because our recording would have been evidence if we sued. People are also much more polite, and focused on problem-solving when they know they're being recorded. They'll consistently put their best foot forward.

Posted by: Sue | October 23, 2007 5:22 PM | Report abuse

Sue's suggestions for documentation are very much on point - take them seriously.
My oldest son, now 46, was diagnosed at age 3-1/2 as "pre-autistic". This came after I watched him at a birthday party with other 3 year olds. His pediatrician told me I was an "over anxious mother", but when that pediatrician was proved wrong about my son's crossed eyes, I changed pediatricians, and thank God for that every day. My son was referred to a pediatric psychiatrist (brother to my new pediatrician), who made the diagnosis and (this was in 1964) recommended we consider institutionalization. When we said NO, we got a referral to an 8/hr a day 5-day/week pre-school program. This was in Illinois, and at that time the state paid the full cost of the program for children like my son (including a taxi to take him to and from school every day because we didn't have a car). When we moved to Philadelphia in 1966, PA had the same rules about paying, and my son was in Special Ed until 9th grade, when he was accepted at Central High School, Phila's magnet high school for very bright boys. He graduated, and attended Drexel Univ. for 3 years before dropping out.
We finally figured out he has a relatively mild version of Aspergers. I saw a lot of kids in his special ed programs whose symptoms and behavior were much more serious. All in all, we were very lucky. I hope all of you posting above about your special children have the same blessed experiences we had.
I now work in a law firm where one of the attorneys has Aspergers - a much more severe case than my son. He is highly respected as the best researcher and brief writer in the firm - but he won't look you in the face when you greet him in the hall. Still, he functions in a work setting that enables him to function.
Hang in there, be a strong advocate for your child(ren) and seek advocacy assistance whenever you need it, read the rules and laws, and, as Sue said, document. Blessings on all of you and your children.

Posted by: VKlip | October 23, 2007 7:00 PM | Report abuse

"In some circles it is considered normal, even desirable for developmental reasons, for a child to remain in diapers, use sippy cups exclusively, speak in babytalk, and ride in strollers instead of walking, until they are four. "

I think the writer of this comment doesn't get it.

My child was very delayed in toilet training, but as soon as he could walk, he refused the stroller (10 months, thank you very much).

He was advanced in speech, motor skills and other areas.

He also had problems with transitions and changes in routine, that we must still acknowledge even though he's in his late teens.

My nephew recently had similar toilet training issues, and some of the sensory issues that bothered my son.

My son has some quirks, but I never once thought about having him tested, despite incredible temper tantrums, etc. I thought it was just his personality.

Those same signs in my nephew, coupled with severe speech delay, motor difficulties, and other problems, turns it into a set of issues that he needs help with.

Looking back, I could have used some help, but my son was very bright in school, so I just thought the tantrums and the other issues were his "normal."

By the way, when my son had trouble toilet training, my mother tried to reassure me that there have always been kids who were like the author's son, very late in going to the bathroom independently. My mother told me of a neighbor's child in the late 1950s who was not completely independent until he was four. That was 50 years ago!

Posted by: Kimmy | October 23, 2007 8:50 PM | Report abuse

I am signing in to let you know two things: don't wait on a diagnosis to get your child started in speech therapy and occupational therapy. From what you write, he sounds both bright and very resilient -- he gave himself a time out at Christmas? Around here we call those "great coping skills" and "self-starter chutzpa!" You have raised him to have some faith in himself, and have given him room to find his limits: there is no reason why any diagnosis need trouble you (or him) for very long.

With that said, four is a little late in the game to get started on some of the behaviors: that isn't a serious problem, I suppose, it is just that a lot of children get started on their therapies earlier while they are very plastic. I will not be surprised if you find (like we did) that toilet training will come immediately when he reaches a couple of other milestones - I don't get the connection, but readiness is tied to something different in kids who are "neurodiverse."

The speech therapy and occupational therapy (key words to look for are sensory aversion and sensory integration) are really, really critical. Get good names, and get started with that. I am new to this area, so I don't have good names for you - but hit the network and they should have good names for you. When you finally have the diagnostic appointment(s) - and they can take months, even when they get started - talk to those doctors about what they think works.

Next, it is a confusing world in this corner of the universe. There are a lot of very vehement camps in the "autistic" world. Be extremely skeptical and always ask yourself if the people presenting the view in question have a stake in getting you to spend money.

Eventually, after much time, effort, and the occasional very sad day or week, know this: your child is still the wonderful, PERFECT, charming child that he always was. Now you just have a name for some of those behaviors, and a way to understand and DEAL with some of the differences. Love your wonderful son. He's going to be just fine, and so are you.

For the record, my son has been diagnosed with everything from minor mental retardation, to mild autism, to PDD-NOS, to oppositional behavior disorder. PDD-NOS seems to fit him best. After occupational and speech therapy, at times really intensively, he is now completely mainstreamed in an age-appropriate public school classroom. He does so well, he may not qualify for services from the school district. We face all kinds of problems all the time in the nature of people who think he's just ill-behaved or I'm just a moron. People can be real buttheads. But our family is doing great, the boy is doing great, and we couldn't think of him any way but how he is.

I wish you strength, ferocity, patience, and humor for the journey ahead.

Best wishes,

Bad Mommy

Posted by: bad mommy | October 23, 2007 9:13 PM | Report abuse

"your kid isn't communicating in ways Grandma or the aunts and uncles can understand by 1 year then it's something to talk to your pediatrician about without delay!"

Actually- you can tell your child has a speech/language delay if 75% of his/her communication is inaudible by a non-family member when they are around age 4.

Posted by: Momof5 | October 23, 2007 10:43 PM | Report abuse

I'm a dad. Our son is now 20. Those with young children, all who read this should know a few things about the future.

I will spin through this like I'm punching the "forward" button on the DVR:

Our son was born seven weeks premature, weighed three pounds. Four when we took him home from the hospital a month later. The NICU doctor's parting words were, "Do the best you can with him."

Almost immediately, I memorized the world-famous story "Welcome to Holland." My wife and I had had dreams and hopes and expectations for his older sister when she was born, and so we dreamed big dreams for him, too.

He was diagnosed with cerebral palsy when less than a year old. His growth and development never registered on the pediatrician's charts. Five years of 3x week PT, OT and speech therapy followed. He also memorized every Thomas the Tank Engine book and video.

It took years for grandparents, neighbors, co-workers and friends to get past whatever embarrassment, pity, or feeling of "there but for the grace of God go I."

He learned to lean on a walker and attempt to put one foot in front of the other, but it would not be called walking. Crawling was the most he has ever done on his own - the "milestone" skill of someone 8 months old.

Starting school, he was evaluated by a team of professionals who read from their development charts and planned his education but hardly knew his name. Since crawling was his highest level of locomotion, he was defined to have the skills of an 8-month old. Our son attended this meeting with us. He sat in the corner and read aloud a Thomas the Tank Engine book to his sister. The evaluation team didn't know how to handle that dichotomy.

A couple of years later, he demanded to stop going to therapy. He wanted to be a kid, like his friends. All his therapists warned of the dangers that he would regress and never be the most he could be.

He got a power wheelchair and blossomed on his own.

He has never held a pencil, never wiped his own bottom, never shot hoops.

He's never been segregated, either - no "special" ed, no "special" camps, no "special" anything.

T-ball at the park & rec. Cub scouts. Karate. (Yes, karate). Performing in community theater.

Now he's an academic honor student in community college. Won national essay awards (he's used a computer since he was four). Been a keynote speaker. Served on a commission reporting to the President of the United States. He is reaching for his dreams, like kids do. Didn't you?

Your child is not broken. Your language, attitude, and expectations reveal everything about you to the core. Don't think for a minute that your child doesn't pick up on even the tiniest signal that you think something is "wrong."

Always, always think about how your words and actions affect *how your child feels about himself/herself*.

The bedrock lies in language. Your child id a child, first. A beautiful child. If he or she has autism, say it that way. Don't fall into the easy, predominant language trap of saying/thinking "my child is autistic." You have a child. Your child has autism.

A web site mentioned in Dear Abby and O Magazine for more information on this approach is disabilityisnatural.com.

I somehow want to close by saying "good luck." But nobody says that to a parent if their child *doesn't* have a disability, do they? That would seem presumptuous, a quick out with an unspoken "Thank god I don't have to do face what they do."

You don't need luck. Your child doesn't need luck. Your child needs love, dreams, hopes, love, attention, expectations, love, and love. Your child needs responsibilities and friends and laughs and successes and failures. Just like every child.

Listen to your child and your gut. Chances are, most everyone else who gets involved somehow will be connected by their job or money or insurance or a matrix chart that says "if this, then this." You will likely come across numerous professionals with "years and years of experience" who turn the office light off at the end of the workday and go home to something different.

Listen to your child.

Posted by: DadOfaGreatOne | October 24, 2007 2:43 AM | Report abuse

Hey Miguel,

Nice piece of writing, my friend. Pretty brave. Focus on the positive comments on the board, here. You're a good guy and a good parent.

chrs,
Fox

Posted by: Steve | October 24, 2007 11:03 AM | Report abuse

Kimmy, your comment of "He also had problems with transitions and changes in routine, that we must still acknowledge even though he's in his late teens. "

I still have that issue in my late 20s and I have no doubt it will be with me forever. One of the easiest and simpliest ways to calm me down and get me in a good headspace is to go over a daily schedule with me of what's going to happen around what time and build a timeline.

One of the easiest ways to get me cranky and stressed is to deviate from that. Now, I recognize of course that life is life and deviations will occur and I do my best to control my irrational reactions to schedule changes. But I'm still very grateful that my loved ones know to call as soon as something big deviates and give me a new plan.

I've made so much progress that I've even been known to deviate from my own plan on occasion!!

Posted by: Liz D | October 24, 2007 12:12 PM | Report abuse

My best friend wrote this piece.

Now he's my hero as well.

Great work Mike.

Posted by: Bill the Thrill | October 24, 2007 4:44 PM | Report abuse

I am the NASCAR friend Mike mentioned. My husband and I have a 4.5 yr old son with high functioning autism. Our son really benefitted from early intervention. His treatment began at 2 years, 4 months. I knew at 18 months that "something wasn't quite right". My husband did not want to believe it, but eventually, he accepted it. We have been doing speech, occupational and behavior therapy for over two years now. We also follow the DAN! protocol. Our son's speech doubled when we put him on a gluten and casein free diet. We also give him nutritional and metabolic support and have seen developmental gains by addressing these issues.

The most important thing when you suspect developmental delays is to take action. Many of these children can improve, catch up, and sometimes even lose their diagnosis. Our son is now mainstreamed in a regular, private preschool with no further special education support. I never would have thought two years ago that this would be possible. I told myself that I would not rest until I had investigated every avenue that might help him, and he is SO much better.

Thanks Mike for bringing attention to this very important issue.

Blessings, Leslie

Posted by: Leslie | October 29, 2007 3:38 PM | Report abuse

Gosh reading all of this brings back memories. Distant memories that seem to be always near the surface of my brain. When my daughter was young she, too, was often inconsolable, needed strict routine or she would melt down, and often melted down in spite of my efforts. She went on a weekend train trip with her grandmother when she was 4 and came home and cried for 2 weeks. She didn't sleep through the night until she was 6 months old, and that was only for 4 or 5 hours. At the age of two she literally "slept" 2 hours a night, but talked for 24 hours. She had poor eye contact, didn't like to be held, but clung to me in desperation in public, crowded or open spaces. I once kept her from walking off a cliff at a mountain parking lot because she saw something on the other side of the deep chasm she wanted to get closer to. She saw the object but not the thousand foot drop.

But, she was a very bright child. She talked at 7 months, sentences at 15 months, taught herself to read at 2. You see, this was back in the 1960's. The internet didn't exist and information was scarce. I knew my child was very different, and I knew her life could be better, but I didn't know how to help her. When she was 2, in desperation I called the local school and asked if there was someone in the district who could see her and help us. Fortunately for us, the school district psychologist had his office in our local elementary school. I hadn't even known there was a school district psychologist until that phone call. I talked with him and he invited us in for a visit. He did some modified testing and referred us to the most wonderful pediatrician a few miles away. This man had been working with what was then called "hyperactive" kids since the 1930's. He was a wealth of information to this sleep deprived parent. With his guidance, life became bearable for my daughter & better for us.

It took hard work and a lot of years, but she came through it all. At the beginning of each school year, I would have to go have a conference with the teacher and ask for small changes to be made to accommodate my daughter. Most teachers understood, or tried to understand. My daughter was on a very low dose of medication, but her primary goals were met through environmental & dietary changes. Now, my daughter would be diagnosed with ADD or ADDD and/or a form of autism. I did a lot of research when my daughter was young. What I learned at the time was she was a very fine line away from being autistic. I have no doubt if she were young now, she would be diagnosed with a form of autism.

Many years of hard work and some heartache have passed. I am proud to say my daughter is now an executive in a large company. She deals with the public and guides her various "teams" with finesse. She is a focused workaholic, but she has found her place in society and is genuinely happy. The latter is what is most important.

Mike, I share your heartache and your anxiety. I've been there and it's not fun, but you are doing the right thing. It's most important to find the best specialist(s) you can and stick with them. You've got a huge learning curve ahead of you but you're well on your way. I wish you and your family only the best. I'll be thinking of you often. Thanks for writing your blog.

Posted by: Linda | November 6, 2007 12:32 PM | Report abuse

The comments to this entry are closed.

 
 

© 2010 The Washington Post Company