February 22, 2005

An Introduction to Chandler: Birth to Diagnosis




I have never really posted a good account of how we got started on this journey, and at this point I think it would be helpful to the new visitors that are coming to the blog. I suspect that many people are coming after watching the coverage on NBC and asking themselves, “could my child be autistic”. I write this with you in mind.

My husband Scott and I gave birth to our oldest son Webster in September of 2000. He was born 7.5 weeks premature and spent the first month of his tiny life in the NICU learning to breathe. Despite his rough start, he grew to a healthy little guy, and when he was only 9 months old we discovered that, Surprise! We were having baby number two!

Given the problems I had in going to term with Web, everyone was quite alarmed when I began having contractions with Chandler at only 5 months. I was ordered to bed and put on Terbutaline. After several weeks of not moving, I developed gestational diabetes and needed insulin to control it. I managed to stay pregnant to 36 weeks (to the day) and Chandler was born perfectly healthy.

At three weeks old, just three days after being vaccinated, he developed colic, which I have heard is common with ASD children. The only thing that soothed him was white noise, so I made a sound file with vacuum cleaner noise and looped it, and then would set him next to the computer speaker and turn it up until he stopped crying. He also had trouble controlling his body temp and would get flaming hot even though he was not really sick. We would strip him naked and cover him in baby wipes and call him Fire Baby.



All of this subsided after a while and until about 18 months he was a happy quiet baby who made lots of eye contact, played with his brother and sang the theme song to Maisy.



Around 18 months, on Halloween to be exact, I had a really hard day with him, and couldn’t really figure out what the problem was. I am fortunate to have a great group of girlfriends, 7 of us were pregnant at the same time and all the kids were born with in 6 months of each other. Chandler being the oldest of the pack.

We decided to dress the toddlers up in costume have a little parade through a retirement home near by, much to the delight of the elderly residents. It turned out to be a rough day for me. When all the kids happily followed their moms down the hallway, I was chasing mine who was heading out the door. When all the kids stayed in the day room where their mothers were, mine went down a hallway full of empty rooms and ran into the last door he could find. When I caught up with him it turned out that there was a bedridden man in that room who was quite tickled that the little alligator had paid him a visit. I figured God had told Chandler to head down that way so that he could have a little holiday cheer.

The rest of the day was exhausting. He would not hold my hand and walk with me like the other kids did, he would not let me carry him like the other kids would. Chandler wanted his own special tour of the place, and he didn’t really care if I came with him or not.

Afterward, we all gathered outside for pictures. I couldn’t hold him still for them and eventually gave up trying to wrestle the alligator.

That night we went to a party at the neighbors. There were a bunch of older kids running on hardwood floors, and things got very loud. As things got louder, Chandler got more upset. While his older brother was running in circles and laughing his head off with the other children, Chandler eventually became completely distressed and I couldn’t comfort him, so I took him into the back bedroom. As soon as I shut the door, he took a deep breath and flopped onto the bed as if to say, "thank God we got out of there". It was clear that he could not handle what was going on in the living room. Later that night when things calmed down, we tried to take a picture of our boys with the neighbor girls, but despite them being the only ones left in the house, he just could not handle it.

After Chandler's diagnosis I went back and watched home videos to find out when things started changing for him. We had a gap in our video's between my older son's birthday in September and Halloween. It was clear that he had changed sometime during that time. After watching the videos I checked his shot record and found that Chandler had been vaccinated just before the gap in the video, five weeks before Halloween.



From then until Christmas, I noticed that he was harder to handle than my friends kids were when we were in public, but kept telling myself not to compare him to others, or to his brother. I was getting worried that his speech was not really coming along. Scott and I had agreed that he was going to be a quiet guy like his daddy, and we would have to take special care that he did not get overlooked. Especially when his brother had such an “in your face” style when it came to his own needs.

We did and so we always knew what he wanted, even when he didn’t “ask” for it.

I am a former family therapist. I have an M.S. from Johns Hopkins in adolescent and family therapy and, I had one autistic client when I was doing social work in the foster care system in Baltimore during my schooling. Although not specifically trained in treating autism, I was certainly more than familiar with it and qualified to screen for it. In January it started creeping into the back of my mind here and there, but I told myself to quit diagnosing my son and let him progress on his own time. (I have tendency to diagnose and classify my friends and family, my own little obsessive game) At the end of January, I dropped him off in the nursery at church and as I was walking in the door I thought, “please cry when I leave so I know you are not autistic”. He didn’t cry. I told myself not to be paranoid, that he was probably fine, but if he was still not speaking more than the three or four words he had by his second birthday, in March, I would look into it.

In February my friend Julia, Chandler’s god mother, was over for a visit. She began to talk to me about how much she loved Chandler and wanted to connect with him, but that she was finding it difficult. She said, “I have a friend whose son was having a few problem, but they got him some extra help and he is doing great now”. I thought, “Shit, she sees it too”. Up until then no one had mentioned that they thought anything was wrong. I asked her if she was talking about autism and she said, “Oh, are you already thinking about this issue?”. I told her that I was taking him in for his 2 year appointment in a month and was going to see if his doctor saw any cause to worry.

It was a casual conversation, and she handled it very gracefully, but when she left I felt like I had an elephant sitting on my chest. I knew sitting on this any longer would be irresponsible of me. So I got out my DSM and read the diagnosis for Autism, then went online and pulled up the screening questionnaire that docs use when they suspect it and watched him very carefully over the next two weeks and every day felt more panic and depression. I waited a week to mention things to Scott, and even then did so really slowly. He was not worried, and reminded me that his mom kept saying that, “Scott had done that when he was a baby too”, about almost all of Chandler’s quirks. And since Scott was fine (just very, very shy growing up) Chandler would be too.

I talked to Webster’s god father, whom I trust immensely, and as he is a doctor, asked his advice on proceeding. He suggested I not mention my concerns to Chandler’s doc when I went into the appointment initially, and see what the doctor picked up on. That way I could know that he would have some objectivity and if he suspected it, I would know that I didn’t plant it.

Well we were only in the office about two minutes before his doc started asking me the screening questions for Autism, which I answered with specific examples rather than generalities. He said that he would like him to see a specialist that evaluated children’s speech “and other things”. He gave me her number and asked that if I had trouble getting an appointment, to call him and he would make sure I got in quickly. Neither of us mentioned our autism suspicions.

I decided at that point, I was not going to be the first one to say the “A” word, to any of the professionals, until they said it to me.

I called her that afternoon, and although her voice mail message said it could take up to a week to get a return call and a month to get an appointment with her, she called back that afternoon. She said she had talked to the doc and she had a cancellation the next day and wanted to see him. She asked me questions that I answered again with specific examples, and at one point in the conversation she said, “it sounds like you know what we are talking about”. I answered that I was a former therapist and familiar with problems that some children had and left it at that. Then there was a long awkward pause, as I am sure she knew that I knew, but didn’t understand why I didn’t finish up the thought. But I was determined not to call it Autism until they did.

So we went in to see her the following day and after about 20 minutes with him, she sat me down and began to talk to me about his development problems, his speech delay and that he seemed to be lacking some of the basic skills that lead to speech. She again stopped and asked me about my therapy background, and gave me the chance to tell her I suspected Autism, rather than her having to drop the “A” Bomb on me. But I still let it be awkward rather than lable him myself. So she finally got to the place in the conversation where you tell the client what kind of therapy that “autistic children benefit from”, and my heart just fell into my stomach. Even though I already knew, I still wanted her to say it was his hearing that was defective, not his brain.

I managed to keep it together until I got to the car, then spent a long time sobbing. I eventually went to the store and bought the book that she recommended and went home.

When I came in Scott asked me how it went. I couldn’t really answer him, so I just put the book on the desk in front of him and started crying. He gave me a hug for about a second and then started acting strange for him.

You see no husband in the history of marriage is as good as mine at taking care of his wife when she is sad. He should teach a class on it. No matter my level of distress, Scott can absorb it and it doesn’t rock him. He usually just holds me until I am better.

But at this moment, he gave me a begrudging one second hug and said, “I am gonna go hug Chandler” in a very strange tone of voice and left me sobbing on the couch. At that moment I realized that Scott had gone bye-bye. I fortunately had the presence of mind to make the decision that I would just have to be OK with whatever he did over the next few weeks seeing as he was much less prepared for this diagnosis than I was.

He floated around in a haze for a couple of days, and when I asked him his thoughts on how we should proceed, he couldn’t really answer. A few more days went by and I told him that I was starting to make decisions for Chandler with out him, and I wanted to give him a chance to give me his input. He said that he still couldn’t wrap his brain around the whole thing, and that he trusted me to make the right choices. He just spent a lot of time hugging our baby.

Somewhere during the course of the first week we got into a conversation that again compared Chandler to his daddy. It struck me that over the last several months I had been saying that the two were so alike, so that if Scott was normal, then Chandler must be normal too. Turns out that they are so alike because they are both on the Autism Spectrum. I met Scott in high school when he was 15 and terminally “shy”. He was sweet, but awkward and a bit nerdy and seemed to talk at people more than with them. He had a big crush on me, but he was of little interest to such a social butterfly as I.

We didn’t date until 10 years later. I had not seen him for 3 years and was surprised at what a bright, well-balanced, good looking man he had become. A very different guy than he was at 15. I always just thought of him as a very late bloomer.

The more we talked, and looked at Scott through the ASD lens, the more clear thing became. Eventually I went to bed and he stayed up all night reading everything he could on children and adults with Autistic Spectrum Disorders. In the morning his said his whole life made sense all of the sudden.

It still took him another two weeks before he could join me back in our world. I didn’t press him, just asked how he was doing and let him alone to process, then one day he re-engaged and started talking with me about what to do for Chandler.

It has been a year since then and it has been quite the emotional roller coaster. I think it was only last month that I started to begin to feel normal, but I certainly don’t feel all the way “normal” yet. It is a really hard truth to balance.

It is very hard not to live in the past and think, ‘If I had only ______, then he would have been fine’ and not to worry about the future, Chandler’s life, the effect on Webster, our finances, our marriage and on and on. The only way to keep from being overwhelmed is to just deal with Today. To trust that God has made Chandler, and all of us, just the way he wanted us to be, and do the best we can for Today.

Ironically, the best teacher on how to do that is my beautiful son, Chandler. One of the gifts of his autism is that he is always “in the moment”. 5 minutes ago was so 5 minutes ago. An hour from now is not even on his radar. He does not regret, and he does not worry. He is just happy to be jumping up and down.

We are so blessed to have a son to remind us of the joy of living.

38 comments:

Deanna in San Diego, CA said...

I just wanted to let you know, your story is so similar to mine and I can fully relate to everything you have gone thru thus far. My son was born
March 19, 2002 and diagnosed at age 2 as well. We were sent for "evaluations" at 18 months, but no one wanted to say the "A" word because he was so young. Meanwhile, as a single mom, I'm pulling my hair out trying to get a handle on the behaviors that come with Autism. The first two years were unbelievably difficult, but this year, with intervention and much determination, it has been the best year yet. Yes, I too am finally beginning to feel "normal". Not that I can take him to the grocery store yet, but that I can get him in the car seat without a meltdown and I can get him dressed in 10 minutes instead of 45 minutes. I haven't been bit in 1 month and just tonight he said his first unprompted, "I love you Mama". It's all worth it. Every single torturous uncontrollable fingernails against the chalk board minute is all worth enduring for the priceless love and pride I feel for my little boy. Good luck to you, I will come back to see your family's progress! Happy Birthday Chandler!

Linda said...

Why is it that Halloween always brings to mind the differences. That when I discovered that Kyler was also different. Your story is so familiar, and sometimes I wonder if I was also part of the spectrum? I was shy, no social interaction and made fun of from kindergaqrten up until the day I graduated. Unlike yourself, my husband has a hard time dealing with it. He has no patience and loses his temper easily. Kyler was diagnosed with ODD first then ADHD, and now it is those along with PDD-NOS.

Amber said...

I'm a 25 years old and I have 2 boys. A 4 year old who they classified as having Asperger's Syndrome, and a 2 year old who was recently diagnosed with Autism.
Since the birth of my 2 year old, I knew something was different about him. He lacked eye contact, he didn't really like to be held, he got lost in the lights and dust particles. He developed rather normally until he was around 1. Then it seemed he lost everything he had learned. He had been saying a few words, singing, playing with toys, and gave us kisses. Then he slowly regressed and we all kept saying he would get better. I had my oldest son placed in a day treatment facility for children with disabilities, and at the initial testing, I took my youngest son with me(at this time, no one could handle him but me). When the nurses and doctors met me and my children, they took interest in my youngest son. They asked if I would agree to have him tested. I readily agreed and soon they came back with the developmental delays and asked if they could place both children at their facility. They said at that time he had been diagnosed with PDDNOS. At age 1 1/2, we had him tested for allergies, thinking they were the cause. When the allergy doctor saw him and gave us a positive for egg and milk allergies, he asked if my son had been tested for Autism. Thats when my heart sank and I felt weak. It took us almost a year to get into a specialist to get tested. During that year, I lost my baby. He turned into his own world and we weren't included. He pulled away from us and wanted to do his own thing. His older brother made remarkable strides in his development and soon caught up with his peers. My youngest just seemed to get worse.
The day I took my 2 year old to the specialist, he was being defient and running around the waiting room, constantly on the move. I talked to the doctor and never brought up the A word. I wanted her to tell me what she thought. She tried to work with my baby, bring him into play, calling his name. He ignored her and kept trying to leave. Making his "noises" and flapping. After 20 minutes, she looked me in the eye and said she was looking at a text book example of Autism. I didn't know whether to cry or feel relieved. Now we had a diagnosis we could work with, a "label" or sorts so we could get government help and have more options.
Since the testing, my son's day treatments have changed. They aren't focused so much on getting him to talk now, but to prompt him to show us what he wants. He's come a long way now. He doesn't run away from us as much. He responds to his own name. He still has a few words, 3 or 4. But my baby gives me kisses now because he wants to. I see something behind his eyes now, he doesn't appear so blank. He loves to be held, tickled, and play with us. He still has moments when he wants to be alone. We can't sing around him, because he screams and cries. But we have learned to say the songs. He's such a joy to my heart.

gwuinifer said...

I was wondering, what type of chelation are you doing with little Chandler? He is so sweet- reading your stories about him remind me so much of my son Ethan. I am only just beginning to seek help for him- I am done pretending that waiting a "little while longer" will make the problem go away. I was exposed repeatedly to airborne lead during my pregnancy... I am thinking chelation might be a good place to start. Please email me at g_carradine at hotmail.com if you'd like to maintain privacy about it, or post here in reply if you don't mind your response being public. Thank you SO SO much for journaling. Your tale has given me courage to confront this for the first time. It's so much more of a monster when we keep it in the dark.

MOM-NOS said...

I just discovered your blog and was struck by how similar your story is to mine! My son is 5 and I had an experience similar to your Halloween story when we joined a Kindermusik group when he was about 20 months old. While all the other kids engaged with ring around the rosey and sat calmly in their mom's laps, my son ran around the room and down the hallway, trying to turn off all the lights!

In the following years, the more we've learned about our son, the more we have come to understand my husband who, though not officially diagnosed, is almost certainly on the spectrum. (He was diagnosed with ADHD a few years ago, but I don't think that's the whole story.)

I recently started a blog as well, and though it's in it's infancy I invite anyone to check it out! It's at http://momnos.blogspot.com/.

Ginger said...

So sorry for the long delay in answering these wonderful comments. It is hard to both raise an autistic child and advocate for autism. I need at least two or three of me. And a fourth me to go on vacation.

Ginger said...

gwuinifer,

We are doing DMSA. We did it for two months with really good results. We stopped because of finiancial constraints, but will be starting him again in March.

You do him a great service by not waiting any longer. I wish I had not waited as long as I did.

I would start by reading Children With Starving Brains. It is heavy reading, but it does the best job of breaking down all the complex biological issues involved autism so you can understand them.

Find a DAN! Doctor in your area. Defeat Autism Now! is a movement to get the medical field to actually treat autism. Read their web site. http://www.autismwebsite.com/ari/index.html

I need to give a complete list of the things that have worked for Chandler. Here are a few things that you can do right now to help him out.

Put him on the Gluten Free/Casin Free diet. This is taking dairy, wheat, barley, oats and rye out of his diet. Some people also include corn and soy. It is a difficult diet to keep with, but most autistic kids really improve on it. My suggestion is to try it for a week and see what happens. Chandler started showing signs of improvement after two days on the diet.

Get him on fish oil. From what I have heard, pretty much all autistic kids respond well to it. My boy sure does. Make sure it is chelated so there is no mercury. We use Nordic Naturals, lemon flavored. I have heard from lots of moms that this is the easiest to get them to eat because it does not smell fishy and tastes lemoney. Works for us. Here is the link to order it.

You may not be the only one deciding to start out on this road, so I should probably make a formal post with my recommendations on how to get going in the right direction.

And thank you so much for writing to me. I really mean that. When I acutually can be of help to another family, it gives Chandler's condition meaning.

I will go ahead and write a formal post to parents making some recomendations.

Ginger

Ginger said...

Linda,

I figure it must be the high expectations of fun on the parents part, and the hot, itchy costumes that make Halloween the unoffical Autism Awarness Day. I figure this year I should just have him go as "Chandler" and let him start out with a full basket of candy to eat as he goes.

It is hard to judge parents that loose their tempers easily like your husband does. I have a really long fuse, and usually don't get angry at much, yet I have had many days where I had to lock myself in my bedroom and scream into my pillow, and a few times where I didn't have the self control to go into my room before screaming. There is so much that can be frustrating. It is really unfair.

Scott and I are both learning patience. There seems to come a point where you have to lower your expectations of what things will be like for the time being. It is depressing, but I think it is the first step to seeing the good things about these special little people and just getting down on the floor with them an enjoying them.

I hope that things get better for you guys.

Ginger said...

Amber,

It is so heartbreaking to hear your story. Your boys are fortunate to have a mom that loves them so much.

Have you tried any medical interventions with the boys yet? Diet, suppliments etc?

From what I have seen, it is such an important part of the puzzle, I encourage everyone I meet to look into it.

Thank you for sharing your story with us.

My best to you and your family.

Anonymous said...

I am so inspired by your post. My little Cooper is 2 1/2 and doing so well with ABA, etc. He is also on the GF/CF diet and some supplements. We recently saw a DAN doc that is recommending chelation for a mercury level at the 26 range when it should be under 5. I am terrified because I don't want to do anything to harm Cooper. It seems that there is so much information out there pro and con and I am feeling torn inside to find out what I should really do. Not to mention going broke. Personally I would spend my last dime for my son if I knew it would help but the more information I read- the more confused I am. It seems there is so much out there- who should I believe? I think some mom's with proof in their kids is just what I need. Feel free to offer any suggestions. Thanks.

Ginger said...

Anon,

Because chelating autistic kids is new ground, and because main stream med has been so slow on the uptake, there is not a consensis on what is best yet.

We have gone with oral DMSA as it has the longest safety record, but will start trying the trans dermal version next month.

I would recommend buying Dr. McCandless' book, Children With Starving Brains and joining her Yahoo group. You can also join Chelating Kids 2 and the autism-mercury group on yahoo. There is nothing like having a big group of parents who have gone ahead of you to draw from.

This is a long disucssion. Email me privately if you want to talk more.

Rachel said...

Ginger,

I so understand where you are coming from. I have a 3 year old son named Noah. He is our 3rd of 4 children. We did not notice Noah having problems until I was already pregnant with our son Chase. It took me a year of yelling and screaming at someone, ANYONE to hear me before we got a diagnois of PDD NOS for Noah. Eventually it was decided that he had crossed all the way over to autism. I have read everything I can on the subject, and just recently found a DAN doctor in our area. Our funds are limited, so we are putting him on nystatin right now, and I am using epsom salts baths with him before bed, which does seem to help. My husband refuses to take his head out of the sand, so I am essentially on my own. My family doesn't get it either. My other children have really been impacted by this as well. There are days they don't like their brother very much. I try to remind them that he is frustrated too, and we have to teach him how to act. I pray every day something will work for him. Maybe someday there will be a cure for autism, or at least an answer why. I know it is a sore spot, but I am convinced if I had not vaccinated my son, he would not be the way he is now. He was fine until he had vaccines. I try not to dwell on it, but it's hard sometimes. I wish you and your family the best of luck. Reading your story gives me hope.

Rachel

Jenn said...

I'm someone else who will say that your son sounds eerily similar to mine, and your story parallels ours on many levels. My son Matthew was born at 37 wks on July 4, 2002. He was colicky for 8 months and was not a cuddly baby in the least - he hated almost all sensory input. When he was 2 and on my insistance, our pediatrician referred us to a clinic to have him assessed. The initial diagnosis is "suspected autism" with nothing confirmed until he completes the ADOS testing (we've been waiting for nearly a year). Because he was so young, they wanted to wait a bit, to make sure his behaviour wasn't just the 'terrible two's" - but I can tell you it isn't. We are now getting reports back from my older son's kindergarten teacher (he is 4) that he suffers from the same thing. I never noticed it because our attention was focused on my younger son who is more severe. Likely the diagnosis for both of them will be Aspergers, as they are both very verbal little professors with no social skills at all. They do not interact with other children. I blog as well - mostly about the seemingly naughty mischief that my boys seem to get into - much more than the average little boy I think. They don't seem to understand that making a pool out of chocolate syrup in your room is wrong, or that flooding the bathroom is not a good idea.....it's hard. Somedays I am at my wit's end - at 8:00am.....

Ginger said...

Sister, I feel your pain.

I was telling my mom yesterday how some days are like pushing a boulder up a hill. I have a little red headed monkey walking behind me and undoing everything I have just done.

God forbid I have to turn my back on a pile of folded laundry. BAM! It has exploded and there is a 3 year old rolling around it in and laughing his head off.

Anonymous said...

It makes me so happy to hear so many of the same behaviours I have experienced with my son by someone with your life experience. I am 23 years old and a mother of 2. My son Daemen was born in Feb 2001(my son Brayden in May 2004)and in Oct 2004 was finally diagnosed with Autism. When my son was 16 months I remember dropping him off at the nursery and how he didn't cry, I thought what did I do wrong? Aren't children supposed to be sad the first time their parents leave? The daycare workers only commented that I must have done something right as he was well behaved and comfortable in a new environment with no crying at all on his first day. Something struck me right then as I've been babysitting my whole life (since I was 8) and often infants that their parents had never left them before and the kids pretty much always cried. There was always at least some show of emotion. That's when everything really struck me, this wasn't the first time my son hadn't shown emotion in a circumstance that seemed appropriate for it. I had thought perhaps this was just one occasion but as I thought back I realized what I had thought was just a very well behaved child with odd play habits was actually scarily similar to a 7 year old child I had worked with with autism. My friends and family all said he was happy and well behaved and a bit shy but there was nothing overly different about him and I was overreacting. By this time this insecure first time mother was beginning to feel like she was crazy. I was noticing all of it, while other kids would at least even parallel play my child would look around the noisy room and run crying,the obsessions with rocks, grass, lining blocks and balls up instead of rolling them and the hardest one, not addressing me or himself. He'd take me by the hand and show me what he needed or I'd just look at him and know. I had thought we just had a good bond and didn't need to talk.As I approached my family physician with this, I was told not to worry about this and his hearing was fine, there's NOTHING wrong, first time moms always worry. In retrospect I now have the confidence to say I should have demanded a referral to the paediatrician each and every time but as hindsight is 20/20 I can see a million things I could've/should've done differently and would kill myself trying to think about them day after day. (part of having a special needs child is the great realization that yesterday is yesterday and the only things that matter are today and tomorrow)
Finally after 18 months of feeling like I had somehow screwed up every single aspect of my childs life and I was the only one that could see it, my doctor finally agreed that maybe he needed a hearing test and that's why he wasn't speaking as much. It didn't seem to matter what I tried to show her in regards to his hearing being fine that was what mainly needed to be tested and he would see a paediatrician as well .
In October 2004 Daemen was officially diagnosed with Autism and while some people find that the hardest part I am sad to say after so long of thinking I was losing my mind I was relieved to find an answer. I don't deny I bawled but at least I was able to know now that there were programs available to help us and I could seek the help my family and I required. I hadn't been such a poor mother that he had just closed himself off.
I am happy to say that although there are a lot of battles to getting the help you need for your children sometimes, I have learned that coupled together are the 2 famous sayings, "The squeaky wheel gets the oil" and "you catch more flies with honey than vinegar". I believe these 2 sayings have helped me negotiate through confusing paperwork, waiting lists and overall ignorance and understanding on professionals and strangers parts of my son.
We've had our difficult times and I'm sure we'll have more but there's a huge relief of stress knowing that my son takes day by day and I know that just like Chandler for you, the best teacher to understanding and helping my child is my son, Dae.
Thank you for posting your experiences so some of us can feel a little better knowing we're not alone. Take care.
Maria

Kristina said...

I could relate to a lot of your story. My son was colicky as well, and just massively high needs. Unlike typical children with ASD's, he demanded to be held...all the time. Nursing and holding him 24/7 was my life. I suspected something very early on, but everyone said oh he is so attached to you and your husband, he makes great eye contact with you...no he can't possibly be autistic. The red flags kept coming and coming and my marriage suffered, because my husband thought I was being "paranoid" (I'm a nurse, BSN). Finally at 13 mos. we got the diagnosis of SID/SPD and got him into OT. At 18 mos. his OT said she suspected the big "A," and we went for an evaluation. The doc said he couldn't really definitively tell at that point, to come back when he was 2 yrs. old. So we did, and lo and behold, it was autism. I felt validated and sick all at the same time. I almost fainted in the doc's office.

My husband and I have an eerily similar path as you and your husband, too. We met at aget 15, he was awkward and shy and intellectual (in oddessy of the minds, all that stuff...). I was a social butterfly. He had a huge crush on me, but I had no interest in him other than a good friend. A good friend he was, all through high school and all through college. Finally in my junior year of college, we ended up together (I'll spare you those details...lol). His mom also said not to worry because my son's quirks were just like my husband's, etc.. Well, my husband is an engineer. And he totally fits the engineer stereotype. I suspect he falls on the spectrum as well.

Anyway, I truly enjoy your blog and have shared it with several friends who have kiddos on the spectrum. :)

michelle said...

I am new to this BLOG "thing" so I am not really sure if it's appropriate to ask a question in this comment spot.... but here goes. I have a daughter, diagnosed with Sensory Intergration Dysfunction at 3. She is now 8.We see a well know child neurologist in our area. We emersed ourselves in speech and SI therapies and continue to go twice a week for both. She is doing well all things considered. I actually never really thought she was on the spectrum because our Doc. just doesn't use ASD as a diagnosis very often. He believes in treating the deficits with therapy and not giving kids a label. We've done some mild dietary things and do fish oil and other supplements but that's it from the physical/bio realm.It's only been in the last year that I have realized that SI dysfunction IS on the autism spectrum. So I have been reading the DAN stuff and just went and saw a DAN doc. My question is this (after all that) is it too late to do the oral chealation, is she too old?????

Steve Blume said...

I just want you to know my son Steven who is going to turn 15 in March didn't talk till he was around 5 1/2 years old. He just got his 1st report card this week.
He is now in High School. Straight A's across the board. We have fought tooth and nail every step of the way. I have a wonderful wife who has spent thousands of hours at the kitchen table with him. Believe me there is a lot of hope. I truly believe the more effort you put forth, the better off the children will be in the long run. God bless you and you and your son are in my prayers....Steve Blume 770-386-5999

Christine Rogers said...

Dear Ginger,

My daughter Catherine is two (26 months) and she's just been sent for her autism evaluation from her pediatrican. I already know what the outcome will be, like you I have some experience in this area and it started creeping into my mind long ago. I just read "letting go of Chandler" and I just wanted to thank you for posting that. Reading your posts and the comments others make is such a blessing to me! It's like a little hug to read about everyone else's child taking off and running away and undoing all the laundry! Lots of other little Catherines out there! This recent Halloween was a really had day for us too! Catherine was so pissed off everytime we walked away from someone's house, she wanted to go inside!! I kept writing off Catherine's symptoms as "it's just her personality" because I was/am so much like her. Like your husband I am really starting to think I have ASD too. I recently read "Animals in Translation" written by an autistic woman and it's a lot about how she thinks so much differently than other people. I found myself constantly saying "but that's how I think..."!! I can't find much online about adult autism screening... do you have any suggestions?

Nice to meet you, and again, thank you for posting this blog!! email me anytime flidais95350@hotmail.com

Anonymous said...

Everyone's story sounds the same as mine. we were dx at 2y but i notice the odd behaviors way before them birth to be exact. out dx is pdd-nos we are now 25mo and still nonverbal. when will i begin to feel normal i sometimes ask my self i am new at this and don't know where to start or what to do you can reach me at mrgtullis@yahoo.com

Anonymous said...

Dear People: I fully empathize with all of you.However,I do have to set some facts straight;someone on this site,apparentally has some problems recognizing who Dr.Nan Lester is,and what she does. Dr. Nan Lester is a psychologist, licensed,who handles Aspeger's Syndrome cases; she is a nationally recognized expert on Autism and asperperger's syndrome.

She is not a harmfull professional, at all,and is not someone who should be vilified by anyone, on any website having to do with austism or Asperger's syndrome. I have Asperger's, myself,and I know from all the organizations of autism, in the state of Oregon, that Dr. Nan Lester is one of the leading autism experts, a real one,in the whole United States of America. And,there are not very many.

I can fully empathize with a child who has autism; and with a mother who has an autistic child. However, I really have to come to the defense of Dr. Lester, of Eugene, Oregon, because she is fully accredited,and she is not a phony,nor would she ever espouse anything phony, or harmful, to any autistic person or child. She is, in fact, an expert on kids who have autism and asperger's.

For some reason, someone on this website has given out gossip and web=postings against Dr. Nan Lester,and we members of the autism society of Eugene,Oregon, are saying to all of you, on this site,that there is nothing evil or bad, or phony, or otherwise, about Dr. Lester, nor did she ever do anything bad, or neglectful, or anything evil,to anyone. She does not deserve to be vilified, or libeled on anyone's website.

Please, get all of your information straight; Dr. Nan Lester is not the person you have mis-named her as. She is a fully competent, skilled, intelligent,and caring doctor who knows more about autism,and kids,and asperger's syndrome than most doctors in the whole United States. No one on this website has the RIGHT to say anything ill against her. In fact,it is not legal to libel her here,or to spread bad gossip which is not backed by solid evidence against her. Otherwise, you could be up for libel charges.

I fully appreciate that you as the owner of this site,have a hard time as the parent of an austistic child.However,you are wrong about Dr. Nan Lester, and you are wrong about spreading bad gossip about her,and saying bad things about her on your website. We of the Asperger's syndrome society, in Oregon, will back Dr. Lester one hundred percent.

Please, keep this in mind. You have probably mixed her up with someone else, because there are a lot of phony people around, who will promise to you to cure your child completely from autism. Dr. Lester will never promise easy cures. However, all of us who are in the Oregon autism societies, know that she is one of the very best, and most applauded experts in austism and children,and Asperger's syndrome in the whole United States. We will all stand behind her,and with her.
sincerely, dh bucher, at Eugene, Oregon

Anonymous said...

nacPlease get your facts straight. Nan Lester is not a doctor. She is not even liscenced but she practices therapy with her M.S.W. Nan is not accountable to anyone or any ethics. She is not the give to Eugene parents as presented here. She is very volatile to those who are not on the spectrum and difficult to work with! I would never recommend her to anyone.

Anonymous said...

Hi All,

My son was dx w/mild autism at two and a half. We started (strict) GF/CF diet + supplements at 3 yrs old. Full-day specialised preschool (inc. ABA, speech and OT) began at 3 yrs 10 mos.
Today, my son is eight and a half, in 2nd grade public school, holding his own. He has the assistance of a shared para-professional in his classroom. Today, he is happy, talkative (much of his own interests) smart (loves math, reading and music) and very affectionate. He has grown tremendously, in many ways. I attribute most of his success to his pre-school and al that it offered. That being said, I do not feel he would have been able to make use of all that was available to him, if he had not been on the strict GF/CF diet. I feel it cleared his little body/mind of many irritants caused by ingesting foods not tolerated by his body. Significant to point out is the fact that his first direct and clear communication came the very first day he was given 200mg of vitamin B6. He came through the door, locked eyes with me from down the hall, holding the gaze until finally stopping directly in front of me with a clear "Hi Mommy!" The most beautiful sound ever uttered from a three year olds mouth.
Ginger's blog gives very sound advice. You ARE your childs best and most dedicated advocate.

vj said...

Most of the parents of children with Autism have gone to these situations.We felt it most whenever there's an occassion,(e.g. birthdays,4th of July, Christmas, Halloween). I can say that I'm proud of you because you don't DENY Chandler! When we first learned our son diagnosis,I was in pain...I was hurt. We planned for our son, he's our second child, our eldest is a girl and it's an ideal children for me and my husband.The first four years of his life were unbelievably difficult. He stays in one corner whenever inside the house and does not recognize his family and people around him..He does not say a word from age 1 to 4.Can't do anything for his self. Everytime we are outside the house, he keeps running...he screams, he cries. He doesn't want to have a haircut, can't go to the movie and church.He can only eat french fries and chicken nuggets fom McDonalds.Babysitters can't stand him because he will cry for the whole time we left him.There's so many SAD stories to tell during his 4 years. It also took me 4 years before I was able to finally ACCEPT the diagnosis. I read the book called "THE HIDDEN CHILD", and I cried and I cried. I said to myself, I will PROMISE to my SON that AUTISM will not keep him from doing something that other kids can do. I started to look POSITIVE...I started from the word AUTISM literally...I made this to myself that A stands for ACCEPTANCE, U stands for UNDERSTANDING, T stands for TRUST, I stands for IGNORANCE, S stands for STRENGTH and M stands for MIRACLE. IGNORANCE because I need to ignore those people who judged my son, those people who said that maybe I did not took care of him when he was a baby,people that doesn't know what Autism really is. ACCEPTANCE because I was able to discuss it with my family, with his doctors, with his teachers, with our friends and was able to joined a PARENT SUPPORT GROUP.For me, it's MIRACLE because he was once a child that stays in one corner and doesn't know his family.My son is already 13, he was able to say his first word after his 4th birthday and was able to likes brief instead of diaper. He was able to match, sort,do puzzles,memorize his alphabet, his colors,his numbers and name of places and animals at the age of 5. At the age of six, he learned how to turn the computer on and play games. He started to play baseball at 8 years old, was able to swim at the age of 9. He is in honor roll at grade 7. There's so many BLESSED things that happened to him. Hoping that I will inspire you and other parents of children with Autism. LOOK at it in a different way...FEEL it in a positive way and everyday will be a good day for a child with Autism. Eventhough it cannot be CURED, it can be CONQUERRED by the word itself. Goodluck to you and to Chandler!!!

Anonymous said...

I stumbled upon your website today and I think the information you document and discuss is so helpful to many others. My niece displays many of these same symptoms and when I mentioned something to my brother his wife flipped out on me and told me I am no longer welcome around their children. She does not talk at all and is 2 years old - she runs screams and cries at all family parties and is only calm if she is in a seperate room. When she wants something she takes her mom by the hand and leads her to it. I by no means have diagnosed her but my friends are autistic specialists who suggested she just get evaluated - well now I am hated for suggesting it. I pray that they find the strength and courage to address the issues and get the help that is needed in these crucial early years. I will definielty be keeping up on Chandler's progress - you are an inspiration to many parents and affected family members out there. Thank You!!!

Trish said...

Thank you for writing "Adventures in Autism." My son's story (our story) is so similar - though we have the added adventure of life-threatening food allergies, serious environmental allergies and adoption. I am beginning to face the reality that my 2 year old is heading into the autism spectrum, if not already there. My family and I are fighting like crazy to hold "the force" that seems to be pulling Shad in to his own world - at bay. I think we are having success. I have always taught him American Sign Language (while learning it myself), as well as keeping strict and deliberate control over the food he eats. The sign language has given him a way to communicate with us, regardless of his language deficits - a blessing I am so glad I followed my odd intuition on. I can only imagine what the temper tantrums may have been like without ASL. With it they are bad enough. Thanks to your advice, we are now removing wheat, barley, oats and corn from his already very restricted diet. We will try milk products soon.

In July, my son was in love with my garden tomatoes and cucumbers. He essentially took himself off of all wheat, oat and barley products because all he wanted to eat was veggies from our garden. I remember now that his behavior was much better during the time he initiated his own diet change.

Hearing all of your stories is helpful. I, too, have an MBA in special education, though am so needed as a full-time caretaker of my son that I am not practicing. I have a ton of book knowledge on autism. I could relate to Chandler's story and the labeling concerns Chandler's mom had. We still haven't gotten a diagnoses, but I am not willing to waste time - there's too much to do to pull Shad out of the iscolated world we are watching him seclude into more regularly than I wish to see.

I look forward to reading some of the literature this group of mom's has suggested. Being a mom of an autistic child is such a different experience than being an autism intervention professional!

Thanks again for your stories.

WeissFamPics said...

Thank you for sharing your story. Your boy looks like a treasure and I am sure that he brings you much joy.
I was wondering where you went/who you saw to diagnose Autism in your son.
I am actually looking for the best professional to take a look at my two year old.
My email address is Tsipyweiss@aol.com
Thank you,
Tsipy

Aerysana said...

Wonderful post. Your story is so similar to ours. I call my older son my escape artist. It also started with him when I was 20 weeks pregnant with him. I was also put on Terbutaline (once). When I went into labor again at 28 weeks I refused it after having read more about the medication. My almost 8 yr old (older son) was diagnosed 2 years ago with Asperger's Syndrome. My almost 6 yr old has many shadow traits but not enough for a dx.

You are a wonderful mom and your children are lucky to have you (and your husband).

kimjergen said...

I enjoyed reading your post and reminiscing about the past. I have a 12 1/2 year old son with Asperger's, his story is similiar yet different from your son Chandler. Autistic children are almost like jelly beans of varying flavors - the base is similar but oh they sure do show their own kind of flavor. A post by Kristina is most similar to my son's story when she says; "My son was colicky as well, and just massively high needs. Unlike typical children with ASD's, he demanded to be held...all the time. Nursing and holding him 24/7 was my life. I suspected something very early on, but everyone said oh he is so attached to you and your husband, he makes great eye contact with you...no he can't possibly be autistic." I knew in my heart that my Max beat to his own drum by about 6-9 months old and yet it took til age 7 to get Asperger's diagnosis. Prior to that he was tested on four separate occasions only told that he had a fine-motor delay and speech articulation disorder yet they always did the CARS test but it came back in non-autistic range. I suppose he was tricky to them over a decade ago in knowledge as well as the fact that he loved one on one attention and demonstrated high intelligence in their testing sessions. He is a mixed bag of high ability, craves social interaction(even though he is awkward at it) mixed with obvious challenges.

I always wished I could look into the future to see how he would be or act when he was little to give me foresight as to how to best help him in the world.

Here is what I can say after 12 years -
1)these kids LOVE technology and it brings them so forward in their progress. Encourage them to learn to type early on so they can convey their amazing ideas rather than struggle with handwriting challenges.
2) Offer them plenty of non-fiction type books and learning opportunities as they are very concrete thinkers yet they gradually learn to be more creative by using previous knowledge.
3) Build on their special interest of which they will amaze you in their ability to be experts at such young ages on. This will help equip them with ideas and tools for their future career endeavors even if they seem not to be age appropriate.
4)Don't rush them to grow up too quickly. Enjoy their quirks and appreciate their uniquenesses as this helps them gain confidence in themselves. God knows we need more divergent thinkers and problem solvers so thinking out of the box is a pleasant bonus with Autism.
5)Empower them with knowledge about their disability. Let them know that their is a name for it and that others have it too. Imagine how alone they must feel realizing their differences in their own ways.
6) Early intervention is not just for preschoolers. Intervene early for elementary school and social skills and begin preparing them for puberty earlier than you'd expect. These kids crave knowing what to expect, what will happen etc and this only helps them get calmer and more focused.
7)Believe in them, enjoy their drumbeats, discover a part of yourself you did not know exists.
80teach and practice tolerance with siblings, neighbors, etc there is no shame but pride in how brave they are in our world

Love, hope, and patience to you all,
Kim in Miami

The Precious Case of AkmaL said...

Wonderful blog. I thank you for the post of an introduction to Chandler as I'm a new blogger and also a new visitor. It really inspired me, thanks.

jadinardo said...

I lend out this DVD for free. Many will think that these charges of flu shot humanicide are insane, but didn't the Jews and Poles in 1930s Germany think it was insane to suspect Hitler of having genocidal intent? And they died for their naivete!
-------------------------------------------------------
The following summarizes a 6-hour DVD montage titled, "Flu Shot Humanicide":
-----------------------------------------------------------------------------------------

~ Hitlerian Nazis all grow old and die,
~ but their father of lies lives on in the sky.
~ Satan raised a new fiend
~ to rule the world scene
~ with a “final solution”
~ to preempt revolution
~ by sending the brave
~ to a plague-induced grave.
~ The few who are left,
~ of courage bereft,
~ will serve the elite
~ after freedom’s defeat.
~ At Bohemian retreat,
~ these Nazi elite
~ began to prepare
~ by cremating “Dull Care”.
~ Since their conscience is seared,
~ the way is now cleared
~ to fill Earth with men’s bones.
~ Read the Georgia Guidestones!
~ So, in 2009,
~ they took virus of swine,
~ and concocted a flu
~ to cause panic in you,
~ so you’ll take their vaccine:
~ their planned killing machine,
~ and you will not suspect
~ they intend to infect
~ everyone they inject.
~ For your family’s defense,
~ view this stark evidence.
~ Disk copies disperse
~ to each doctor and nurse.
~ Then mail back to me
~ my DVD,
~ so that I can resume
~ saving others from doom.

John DiNardo jadinardo@optonline.net
http://www.facebook.com/jadinardo

Special Steps Advocacy said...

Like most of the comments on this post, I can relate as well. My son Kalebs went to my mothers daycare while I worked. I had two older boys that both had normal development. Kaleb couldn't handle the loud daycare atmosphere. He would cry until he was finally taken to my moms room where it was quite. That became his get away. His playpen, soft banket (which he still has at 7)and Sponge Bob became his comfort. He was nothing like the other boys his age and went from being a great eater (except for choking with every meal) to being an extremely picky eater. He had so many signs of Autism by the age of three but no one would diagnose him as such. So, I pushed for therapy! He has since been diagnosed with sever ADHD and significant Sensory Integration Dysfunction, but I still believe he is on the high end of the spectrum! When we went for the oficial autism diagnosis, his dad (we are divorced) came too. As dad left to go to the bathroom, the Dr. says... The apple doesn't fall far from the tree. His dad still denies there is anything different with Kaleb. He just thinks he needs more disclipine. Thank you for sharing your story!

BTW.. Kaleb is a little red head too!

Cass_Estes said...

Hi there... I have read your blog before and once again was lead here by AoA. I love your comments regarding "Chris Mooney..." Why would any parent take him seriously? He doesn't have kids and certainly not a child with Autism or APD, Dyslexia or anything else.
One thing I wanted to note, Ginger is that I'm a redhead. Redheads are less than 3% of the population. I've noticed that many kids with Autism or that have reactions to vaccines are redheads or their parents are so they are recessive redheads. My friend's son, one of 6 children has Autism -- she is a redhead and then he is too. He is a twin, his sister is not autistic, but he is. In my case my son seemed to have many autistic/Aspberger behaviors for periods after vaccines. I see your little man in his costume and recall how each and every year there was a battle with Mason's costumes. One year I sat on him to put his costume on and rush him out the door to go trick-or-treating... I was sweating. Upon return from going out late and having a fabulous time that ended all too soon due to the situation of forcing the costume on he told me. "Mom, THANK YOU! for forcing me into my costume and taking me out for fun! I would tell my stories to my other friends (with little girls) and they would give me strange looks. I think there are more and more people who are going to be having reactions to vaccines in the future due to the environmental load of heavy metals. We redheads are the first line, if that makes sense. I'm in no way saying it's genetic -- what I'm saying is we are more sensitive than others so it's more likely to happen in us first. However, there are heavy metals in everything we eat, drink, flouride in our water, tooth paste, also metal in our toothpaste, HFCS... Recently, I discovered that the fillings and crowns I have in my mouth (yes, during all pregnancies) are the mercury kind. One being gold and so my mouth is like a battery and I'm releasing mercury 10xs faster.
You know, I was never told I was having a toxic element placed in my mouth. No disclosure.
Looking back I can honestly show pictures for time periods, with stories that align with vaccines for Mason.
With my daughter who is now 5 I didn't realize soon enough and she has chronic hives which are accompanied with outbursts. Then she is back to her normal, calm, wonderful self.
My littlest of 13 months is another redhead and I agreed to some shots, and stopped after she stayed up all night crying after Hib & DtP. Those are the last vaccines anyone in my family will ever have! She has stomach problems and when we tried to switch her to whole milk at a year old, she stopped talking. I'm so thankful to AoA and mommies like you or I wouldn't have noticed it!
We switched her to Toddler formula and you know what? She started talking again with 48 hours. We also had problems with flouride in our city filtered water. She had horrible poops that blistered her until we switched to Reverse Osmosis system.
I hope any information on our problems can comfort and help other mommies.
I think the world is a weird place, where people like Mooney are embraced or sent in like the Borg on Star Trek. LOL!
Why not question injecting toxins into infants? It's ridiculous to NOT question that. I just keep thinking I'll wake up and opposite day will finally be over!
Blessings from Cass and all of the Estes Family!

Ginger Taylor said...

Thanks Cass for sharing.

I get the red head comments/questions a lot, so a few months ago, after getting two inquiries on it in one week, I started a facebook group called Red Heads and Autism so it could be discussed. People have put some interesting research up there.

http://www.facebook.com/note.php?note_id=184696713343&id=171964245890&ref=mf#!/group.php?gid=248620410839&ref=ts

Cass_Estes said...

Thanks so much Ginger. Bless you and your family! Keep up the fight. You are doing more than you think for so many of us. I post daily on Facebook regarding vaccines safety (repost mostly from AoA, but some I find on studies I find on my own --Like epigenetics which is an emerging science disproving much of what we know). I never thought it made a difference until I saw some of my friends reposting and changing their mind about vaccines.
Thanks for the link!
Cass

Kate said...

Thanks for blogging. As a future physician, I am very interested in hearing about the ways in which the medical establishment has failed its charges. I hope to promote true health in my future patients, rather than just prescribing a bunch of drugs. I, too, am fascinated by the proportion of red-heads in familes with ASD. This is certainly something I will look into. It looks like genetics plays a huge role in ASD: lots of parents with similar symptoms, similar phenotypes in the affected children, and most diagnoses made at around the same ages.

I haven't read much about mercury except for the type in dental fillings (which is safe), but I personally avoid consuming as many pollutants as I can. I'm lucky to live where there is no mercury in the water, I refuse personal care products that contain metals and chemicals, and I avoid eating food that has been in plastic. I will encourage my patients to do the same.

Mostly, I just wanted to note that some of the dietary suggestions mentioned here, such as omega 3-rich fish oil (whether as a supplement, or in fish or eggs) and a low or no gluten diet, are good for everyone. Nutrition science changes rapidly, it's true, but the studies I've read seem to show that we could all benefit from high omega 3s, low other types of fat, low gluten, probiotics, and an overall diet high in vegetables, nuts, and fruits and low in sugary, salty, fatty snacks. You're doing a great service by promoting these ideas.

Good luck to young Chandler and to all your readers' children as well.

Kate said...

Whoops--I meant fluoride in the water. I sure hope there's not much mercury in there either!

Ivan said...

Kate, if mercury used in dental amalgams is 'safe' it would be very decent of you if you very kindly contacted this UK-based dentist and pointed out to them (as politely as possible under such delicate circumstances) that they need to consider very honestly and open-mindedly whether they are either stupid or are con-men, and that their clients are likely gullible hypochondriacs who would be of more use to your colleagues-to-be involved in research into psychosomatia than in misleading the Internet-reading public.

http://www.holisticdentalcentre.co.uk/mercuryevidence.html

I suppose that on the basis of your unsubstantiated assertion that this mercury is safe, I ought to cancel my own imminent appointment to have my mercury amalgam fillings removed and replaced with ones that do not leach mercury, or fluoride (such as the glass ionomers).

Please don't feel any need to qualify your claim that dental mercury is safe. I trust that as soon as you point out that you read this information in a very respectable textbook (or via some similarly incontrovertible means), they will immediately become convinced and alter their business model accordingly.