Today we had a "meet and greet" with Kelly Gardner, the President of Behavioral Consulting of Tampa Bay, a center for ABA therapy. Kelly was great. She spent a lot of time talking with me and Charlie about what we can expect, what the therapy typically entails, assessments, and ABA in a "natural" environment. She took us on a tour of the center. Charlie liked the play area and did not really want to leave to go back to her office. But he quickly seemed to develop a little crush on Kelly and was good as gold while we sat in her office and talked for almost an hour. He kept going up to her and hugging her. She gave him big squeezes and commented that his eye contact is quite good. She said he is already ahead in the social area than most of the kids that initially come to therapy because he is quite social and very responsive to commands and people's moods. She thinks this will make him more receptive to therapies.
The center does have a "task" room (this is my term, I am not sure what they call it) where the kids sit down at a desk with the therapist. I observed 4 kids in therapy. They were all working on different things. Some on shapes, some colors. At least 2 of the kids were non-verbal and signed with their therapists. Some of the other kids we saw today were laughing and talking, paying attention nicely. Just further evidence that autism and the related disorders truly are spectrum disorders. Kelly told me the kids spend 15 minutes of the hour at the desk going over tasks, the other 45 minutes are spent in the play area to make therapy and communication with the therapist more natural. I did tell her I was concerned that ABA might be too "rigid." She said that 10 years ago, it was very rigid, but many ABA programs now use a different approach (I think it was called the Verbal Behavior approach) that is much less rote and more natural, which is why they spend most of their time in "play" type therapy than sitting at a desk doing tasks.
Charlie is scheduled for an initial ABA assessment in late May. She will spend a couple of hours with him observing and assessing his behavior, skills and communication. Then a program will be tailored to meet Charlie's specific needs. ABA does require quite a time commitment on behalf of the kids. Charlie will likely go 3x a week for 3 hours. There is an observation room where parents can watch the therapy over a television. My goal will be to watch at least once a week if possible so I can see for myself how he is doing and if there is any progress, also to implement some techniques at home.
We've been a little leary about ABA. We've heard some really good and some not so good. However, I will say the positive reviews have far outweighed the negative. Even the book I am reading now, Children With Starving Brains (an absolutely fascinating book) speaks positively about ABA. Every kid is different so some respond better than others. Since most of the people who have seen Charlie so far agree that his attention span is the area that needs the most work, ABA seems to be a good fit for now. All we can do is give it a try and go from there.
On a funny note, we started Charlie on his Super Nu Thera 3 days ago. Super Nu Thera is a multivitamin. We are only giving him 1/4 tsp (actually probably a little less than that) as the directions say to start slow and eventually give the full dose of 1 tsp. This stuff is almost impossible to disguise though. Charlie tastes it in just about everything. We have been experimenting with all kinds off things to "cover" the taste. . . peanut butter seems to work so far. This morning I sprinkled his GF french toast with the Super Nu Thera powder, then drowned it in organic maple syrup. You could tell Charlie knew something was up, but he eventually did eat it. This should only get more fun as we add more supplements to his diet in the future.
Charlie's preschool teacher said he had a great day today. She told Adam that he is listening better and following directions. It's hard to believe that this will be his last month of pre-school! We will really miss his wonderful teacher!
Thursday, April 30, 2009
Tuesday, April 28, 2009
Charlie's Speech Therapy Evaluation
Charlie's speech therapy evaluation was this afternoon. It was at the same center (Children's Choice for Therapy) that did the OT evaluation yesterday. This time the evaluation was done solo, without a parent present. The speech therapist said she was not even going to score Charlie (on whatever standardized test they use) as she got little responses back from him. She said she can tell that he knows what she is saying as he pointed to pictures when she asked him to, but did not express any language that was responsive . . . just more of the repeating and echoing of what she was saying to him. She felt it was a very big positive, though, that he transitions very well and does not get upset when his routine or schedule changes. This should be helpful during therapy for him.
Both the speech and OT evals should be completed by next week so we can hopefully make a plan and start scheduling for these two therapies right away.
I do feel that Charlie definitely has the words "in him". . . he just has a hard time getting them out. Sometimes, though, they just pop out of him. Today when we got back home from the evaluation and I was getting him out of the car, I dropped a block that was in the back seat. He very clearly said "You dropped it." And the other day he had his hands full and told Adam "Can't open the door." So, again, I know it's there. He does communicate his wants/needs in very basic terms such as "want water" or "want some juice". . .but we will be working on making him use his words for ALL of his requests and expanding his sentences to "I want water" etc. This is going to require some training and learning for me and Adam as we are so quick and used to just getting Charlie what he wants without making him ask for it first. We also have to work on making him look at us when he is speaking and when we speak to him. At OT yesterday, she said "We're getting ready to rock Charlie's world." He's had it "good" so to speak in that he's been somewhat catered to, but now we will be expecting more of him.
On a good note, the teacher said he had a great day at school today which is always a nice thing to hear!
Both the speech and OT evals should be completed by next week so we can hopefully make a plan and start scheduling for these two therapies right away.
I do feel that Charlie definitely has the words "in him". . . he just has a hard time getting them out. Sometimes, though, they just pop out of him. Today when we got back home from the evaluation and I was getting him out of the car, I dropped a block that was in the back seat. He very clearly said "You dropped it." And the other day he had his hands full and told Adam "Can't open the door." So, again, I know it's there. He does communicate his wants/needs in very basic terms such as "want water" or "want some juice". . .but we will be working on making him use his words for ALL of his requests and expanding his sentences to "I want water" etc. This is going to require some training and learning for me and Adam as we are so quick and used to just getting Charlie what he wants without making him ask for it first. We also have to work on making him look at us when he is speaking and when we speak to him. At OT yesterday, she said "We're getting ready to rock Charlie's world." He's had it "good" so to speak in that he's been somewhat catered to, but now we will be expecting more of him.
On a good note, the teacher said he had a great day at school today which is always a nice thing to hear!
Monday, April 27, 2009
Charlie's OT Evaluation
Charlie had his OT evaluation today. Both Adam and I liked the center and the owner very much. She seemed very knowledgeable and spent a lot of time with us. Charlie and Addison had a great time "playing" in the gym.
She shed a lot of light on behaviors we see in Charlie. She thinks he is high functioning and said more than once that he seems to be quite smart. Like Dr. Carnavale, she felt the biggest hurdle was his attention span (or lack thereof!!). She explained a lot about sensory integration and how kids on the spectrum have issues and what it means for their behavior. In a nutshell (and I will NOT be able to explain this correctly), she observed that Charlie often does not know what to do. For instance, he was in the gym and you could tell he was excited and interested, but it was like he did not know what to do with a lot of the equipment. So, he just kind of walked all around the room, sort of aimlessly, until he was directed to do something. He did go for equipment he knew such as the swing and balls.
She also introduced us to a new word: praxis. She said this is common with kids on the spectrum and observed that Charlie often acts like he does not know what to do in a new situation. For example, today he was on the big swing in the gym. There was a big, inflatable tire on it and she asked him to get out. You could tell he understood what she wanted and he moved to try to get out, but looked very unsure of himself. Once he was shown how to get out of the swing, the next time he did it on his own. Adam and I have observed this on many occasions, but obviously had no clue. I always just thought he was overly cautious about trying new things, climbing things, etc. It's kind of interesting to learn new things about your child.
We also discussed sleep issues and she assessed his fine motor skills. We know he is pretty behind in this area so this will probably be a large part of his therapy.
She was pretty familiar with the public school system's programs so we also discussed that. Based on her observations of Charlie today, she does not think he should be put in a "spectrum class" (as she called it) with only other autistic kids. She said you never want your child to be the top performer or one of the top performers in the class because they won't get enough out of it. She made some suggestions for us to consider, including possibly keeping him in the preschool he is at now since he is not considered a behavior problem. We could explore getting him and aide or a "shadow" to go to school with him 1 or 2 days a week to try to keep him focused and on task since the teachers won't be able to work with him 1 on 1. It's a lot to think about and process. We will have to explore a lot more to figure out which path we want to take.
Charlie has a speech evaluation tomorrow at the same place. Hopefully we can start OT and ST in the next 1 or 2 weeks. I know I will feel better when we get the ball rolling.
On another note, I received a phone call today from an acquaintance here in town. Her son was just diagnosed with autism this past Tuesday. He is about 6 months younger than Charlie. We are going to try to get the kids together soon.
Keep cheering for us!
She shed a lot of light on behaviors we see in Charlie. She thinks he is high functioning and said more than once that he seems to be quite smart. Like Dr. Carnavale, she felt the biggest hurdle was his attention span (or lack thereof!!). She explained a lot about sensory integration and how kids on the spectrum have issues and what it means for their behavior. In a nutshell (and I will NOT be able to explain this correctly), she observed that Charlie often does not know what to do. For instance, he was in the gym and you could tell he was excited and interested, but it was like he did not know what to do with a lot of the equipment. So, he just kind of walked all around the room, sort of aimlessly, until he was directed to do something. He did go for equipment he knew such as the swing and balls.
She also introduced us to a new word: praxis. She said this is common with kids on the spectrum and observed that Charlie often acts like he does not know what to do in a new situation. For example, today he was on the big swing in the gym. There was a big, inflatable tire on it and she asked him to get out. You could tell he understood what she wanted and he moved to try to get out, but looked very unsure of himself. Once he was shown how to get out of the swing, the next time he did it on his own. Adam and I have observed this on many occasions, but obviously had no clue. I always just thought he was overly cautious about trying new things, climbing things, etc. It's kind of interesting to learn new things about your child.
We also discussed sleep issues and she assessed his fine motor skills. We know he is pretty behind in this area so this will probably be a large part of his therapy.
She was pretty familiar with the public school system's programs so we also discussed that. Based on her observations of Charlie today, she does not think he should be put in a "spectrum class" (as she called it) with only other autistic kids. She said you never want your child to be the top performer or one of the top performers in the class because they won't get enough out of it. She made some suggestions for us to consider, including possibly keeping him in the preschool he is at now since he is not considered a behavior problem. We could explore getting him and aide or a "shadow" to go to school with him 1 or 2 days a week to try to keep him focused and on task since the teachers won't be able to work with him 1 on 1. It's a lot to think about and process. We will have to explore a lot more to figure out which path we want to take.
Charlie has a speech evaluation tomorrow at the same place. Hopefully we can start OT and ST in the next 1 or 2 weeks. I know I will feel better when we get the ball rolling.
On another note, I received a phone call today from an acquaintance here in town. Her son was just diagnosed with autism this past Tuesday. He is about 6 months younger than Charlie. We are going to try to get the kids together soon.
Keep cheering for us!
Saturday, April 25, 2009
Our Journey in the world of ASD begins. . .
Welcome to our blog spot and our first official blog entry!! I never thought of myself as a "blogger," but as our recent circumstances have changed in light of Charlie's not yet official diagnosis of ASD, I thought I would like to memorialize our journey for a couple of reasons. First, to keep family and friends updated on everything that is going on, including therapies, biomedical interventions, special ed, and all of our progress. Second, I want a record so Charlie can see just how hard he has worked and how far he has come. . . as I feel sure that he will do great things in his life. He is already such a kind, warm and fun little boy. Nothing will ever change that. He is happy and that is what is most important.
And we will all live our lives to the fullest. I feel that this experience will only make us stronger (ALL of us, including little Addi) and bring us closer together as a family. We are so very lucky to have such supportive friends and relatives through all of this.
Now, by way of background, I will spend a little time explaining just how we got here.
I think I knew something was "not right" for the last 6 months or so, but, Charlie being my first child and having no experience with typical child/toddler development, I was never sure. Plus, with Charlie it was always hard to tell because he has always talked and has always been affectionate. He is not prone to severe or frequent tantrums (just about what an average 2-3 year old would have during the course of a day), and did not seem overly stimulated or prone to sensory overload. He progressed according to schedule and was actually ahead of most of his friends through 2 years of age. In fact, and I'm not ashamed to admit it as I know most moms think this from time to time. . . I thought he was BRILLIANT. I really did (and still do). He had quite an attention span and would sit and look at books for long periods of time. He absolutely loved it. He knew the entire alphabet before he was 2 years old as well as all of his colors and shapes. . . and I'm talking not just circle, square, triangle. . . he knew optagon, pentagon, rectangle, etc. He was quite talkative, pointed at everything and told me what it was. And his memory was definitely above par. He was quoting commercials at a very early age as well as singing whole snippets of songs.
I remember one incident quite well. Charlie had just turned 2. He picked up a Bank of America business card I had lying on a table. He stared at it for some time and then got a big smile on his face. He walked up to me and handed me the card and said "Bank America." I said "What?" and he very clearly repeated "Bank America." How in the heck did this kid figure that out??? Now I realize that he recognized the Bank of America emblem (the little flag). He must have seen a T.V. commercial with it. . . but to connect the two together (a t.v. commercial to a business card and then REMEMBER that it was Bank of America) was quite advanced I thought.
Knowing what I know now, I do believe some of these behaviors were possible red flags. When Charlie started pre-school in August, 2008, I believe his regression had already begun even though we did not know it at the time. In November, 2008 I had a parent-teacher conference with Charlie's pre-school teacher. I left feeling very troubled. I half expected the teacher to tell me that my child was brilliant, by far the smartest in the class. But that's not what happened. Instead, the teacher expressed concerns that Charlie did not seem to pay attention, walked in circles a lot, did not engage in imaginative play, etc. I did not like the tone in her voice so I asked her "Should I be worried?" Her response. . . "I want to keep my eye on him." That was my first true moment where I thought maybe something was wrong. I will remember that statement as long as I live. She tried to placate me somewhat by saying it was early in the year, he was still adjusting. . . but I could just tell she thought something may be wrong.
Still, he was social with us, talked a lot and was very loving, so I kind of put it off. I would say a month or two later when I was picking him up from school, the teacher asked me "Does he ever talk about school or what he does here?" I told her yes, because he did. . . kind of. The more I thought about it though, he really just repeated or echoed what he heard throughout the day. For example, he would sing snippets of the songs he heard or statements he heard others say throughout the day. It was kind of funny because I always knew which kids were getting in trouble as Charlie would come home and say "Max, sit down!" or "No no Sydney!" He was saying the months of the year, which I knew he learned at school so I thought everything was fine.
But there was still a nagging feeling in my gut. I was started to get really frustrated that Charlie would not "talk" to us. Yes, he said words all of the time, but he never held a conversation beyond "want some milk," "want some juice," "want to go for a bike ride" (or telling us in general what he wanted). He never asked questions and never answered questions. In fact, when you asked him a question he either paid no attention to you or looked at you with a complete blank expression on his face. But he was talking. . . so, again I thought he had to be fine. . . he was just not interested in having a conversationg with me yet. But the more I saw his playmates, the more I thought it was just not quite right.
I was very frustrated at Christmas when he was not into Santa (I do think he was interested because he would stare at him and listen very intently when you would talk about him, but, again, no questions or real show of excitement), and not really into opening presents. . . in fact, very little excitement about the presents at all . . . not really what I would consider typical for a 2 1/2 year old. Again, we chalked it up to it's his age and next year he will be really into it. Same reaction at his 3rd birthday party. Very little interest in his presents or even opening them (with the exception of one golf game. . . and now he will sit down and paint with some of his new art supplies if I suggest it to him).
This combined with some behaviors I could only classify as odd were really starting to freak me out. He had this habit of flapping his hands. At first it was kind of cute because he really just did it when he was excited. It was his own little personal barometer. The more he flapped, the more excited he was. Then he started another interesting habit of moving his fingers back and forth and looking at his hand intently while mumbling to it. This seemed to really tickle him, and it did me too at first until he was really starting to do it all the time. He also kept walking in circles and spinning and started walking on his toes from time to time. All of this combined with the constant repeating, no conversation and diminshing eye contact really hit it home that something was wrong.
I asked to speak to his teacher again. She said it was time to dig further. So. . . we did. I spoke to his pediatrician at Charlie's 3 year check-up, and she agreed it did sound like a PDD (pervasive developmental disorder) and recommended an evaluation by a developmental pediatrician. Then began the fun process of trying to find one of these doctors and dealing with their waiting lists.
At this point I had already done a lot of my own research and knew Charlie was ASD. This was an extremely hard time for me and Adam. We knew our baby was likely autistic, and we were scared out of our mind. Neither one of us knew what it meant, and we were both fearful of the future and all of the horror stories you often hear associated with autism.
Everything I read said EARLY intervention is essential. So, I started freaking out about waiting too long to see a doctor to get a dx. We decided to get a private evaluation and just pay out of pocket for it. I just could not justify waiting months and losing that precious time when we could already have him in therapy and be addressing his developmental issues.
I became the ASD research fanatic. What therapies were out there? What is this biomedical stuff and what the heck does GI health have to do with the brain or autism? What can we do RIGHT AWAY to help. I admit I freaked myself out a little bit. I held up well for the first week and then crashed hard. It was a Monday and Adam was supposed to go out of town for work. He never made it. I was in no shape to be left alone with 2 children. I could not go 10 minutes without breaking down. I just got so scared about Charlie's future. I worried he would be lonely and unhappy and what would happen if my baby became unresponsive and didn't want me to touch or hug him. I'm not sure what happened in the space of a day, but by the next day I felt so much better. I just had a feeling in my gut that it was going to be o.k. That nothing has really changed -- Charlie is still Charlie and everything will work out. I think I just needed that breakdown to bring it all into perspective.
Charlie had his initial evaluation with the developmental pediatrician on April 15. Her name is Nancy Carnavale. I liked her and found her to be very friendly and professional. She said Charlie is definitley on the spectrum, but will have to "score" him on the DSM-IV to see whether he falls under autism or PDD/NOS (pervasive developmental disorder not otherwise specified). Both autism and PDD/NOS are on the spectrum of autism disorders.
Almost immediately (in fact BEFORE we met with Dr. Carnavale), we changed his diet to GFCF (which means no dairy, no wheat or gluten). Honestly, this has been the hardest part of this process so far -- figuring out this diet!!! Adam and I have had a time with it! I think we could both qualify for PhD's in reading food labels at this point. It's been hard for Charlie too (no more cheese pizza or mac and cheese -- at least for now), but thank goodness he is young and doesn't really understand that his whole diet has changed. He has gone with the flow for the most part, and we have been able to find snack foods that he likes. Sweetbay actually has a pretty good Gluten Free section as does Whole Foods. I stumbled on a health food store in Carrollwood called Abby's . . . it was a GFCF paradise. I bought out almost the entire section. (We made pancakes this morning from a GFCF mix I bought from Abby's, brand name is Kinnick Kinnick. They were EXCELLENT! Some of the best pancakes I have ever made.) We won't talk about what a hit this has made on our grocery bill. Suffice it to say, this stuff is not inexpensive and I have already dropped hints to relatives to feel free to send care packages of GFCF foods. Ha!
After all this, I finally got an appointment with the only DAN! doctor in Tampa. . . We couldn't get in until October (hopefully sooner -- we're on the waiting list). This doc highly recommends the removal of soy as well. . . as do many other sources since it so closely mimics the effects of casein. So, now we are starting to wean that out as well. Whew!
Now I am trying to figure my way through this maze of supplements that are recommended for kids on the spectrum. There is a ton of information out there. The DAN! docs can do all of the testing to tell you what food insensitivites/allergies your child has and test for high yeast levels and heavy metals in the blood. There is so much out there that can affect these kids. . . it really is amazing. (And quite sad that most "coventional" doctors won't even discuss these options with you and have a pretty condescending / negative attitude about the whole thing. This experience has taught me that most doctors really don't know what they're talking about. No doctor knows a child like his parents do.) Right now we have started Charlie on Cod Liver Oil and I will start him on Super Nu Thera (a multivitamin) tomorrow. After that we will probably add a probiotic, and then I think I'll wait for recommendations from the DAN! doctor as to what else, if anything, to give him. A lot of spectrum kids are also on digestive enzymes and a variety of other supplements depending on what the lab tests show. Everything I have read recommends organic foods and limitations on food dyes and other artificial ingredients (which we should ALL do anyway). The digestive health/autism link is a little too much to get into in the context of this blog, but if you go to just about any autism website, you'll see a ton of information about it. All recommend starting with the GFCF diet.
After about 2 1/2 weeks on the diet and just over a week of the CLO, I do think I see some changes for the better in Charlie. His attention span seems to be improving as well as his eye contact. His pre-school teacher even commented that his eye contact was better this past week. He sat down with me 3 nights this week and pointed to pictures in books in response to my questions. . . even if he wasn't overly enthused about it. A couple days ago, he even told Adam "can't open the door" whe both of his hands were full and he couldn't get outside. He also counted in Spanish with me the other day. . . something he had not done for a while. It may be too soon to tell, but it definitely gives me some hope. He definitely seemed very "hyper" for about a week or so, but I have been reading that this is not abnormal as he is likely going through withdrawal from the casein and gluten. Thankfully the last 2 nights the hyperactivity was much better.
Charlie will go this week for an occupational therapy evaluation. Hopefully we can get that therapy started right away. We are also going to an ABA therapy center to "check it out" and possibly start Charlie there for ABA therapy. Dr. Carnavale also wants Charlie to see a neurologist just to make sure everything is okay since his regression was a little later than is normally seen. We have an appointment in late May with a pediatric neurologist.
We are also checking out what services the public school system may be able to offer us. Once a child turns 3 and has been diagnosed with a developmental delay, they are usually eligible for services through the county. We're checking out all avenues.
We go back to Dr. Carnavale on May 4 for the "official" dx, however, she has already recommended OT, speech therapy and ABA therapy. The DAN! doctor will likely take the lead on all biomedical interventions. I have heard he's pretty great. His website is quite handy http://www.wholisticpeds.com/.
In closing, I just wanted to share a few emails we received in response to the news of Charlie's ASD dx from some of our friends and family that I found particularly touching. You guys are all wonderful and we would not be able to make it through this without you.
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My dear friend.I found myself reading and re-reading your note below. I can only imagine a smiggin of what you and Adam are trying to "process" right now and hope you always remember we love all of you so very much...First off, I want to thank you so much for sharing and for trusting your recent news with me. I can only tell you that Charlie IS a beautiful and spectacular boy. He is so blessed to have such an amazing and dedicated mother and incredible and loving family. I feel so proud to call you my friend!!! Your strength, courage and positive attitude inspire me beyond words. As far as I can see it, Charlie has already crossed over his first and important hurdle by having your undying love and support during this unknown and confusing time. I am so confident that things will be okay. Charlie is one of the kindest boys Brianna and I have ever met and he is an extraordinary child who is not only smart, personable and sweet but intelligent and brave as well - geeze, just like his mommy!!! It will undoubtively be a journey but please know that you have many people who love you and who will be there for you each step of the way. Whatever you need, I amhere... I truly believe we all have an angel guarding over us and for your son, I know he must have many... He is who he is... a little boy who lights up the room whenever he enters. A little boy we are so lucky to call our friend. A little boy who to know, is to love...My thoughts and prayers are with you all during this challenging time. Always remember when one door closes, another will open. For you and your beautiful son, I know there will be many doors that will open.My love to you, Cher
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Tricia,
Earlier this afternoon, on my way to a deposition in Orlando, I had responded to your Tuesday e-mail about lunch. Shortly thereafter Sophia called me and told me about Charlie and the e-mail you sent her. She forwarded it to me and I just finished reading it.
First, you have our absolute total support and friendship. Whatever we can do for you and Charlie - just ask. I can only imagine how difficult this has been. Fortunately for Charlie, he has two very smart, loving and caring parents. I truly believe that a parent's love can help conquer just about anything and your unconditional love for your children would be obvious to anyone who has met you.
We need to get our families together soon. Of course, I would also love for you and I to get together for lunch when you are at work downtown, so just let me know what is convenient for you. Again, let us know if there is anything we can do.
-Mark
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Wow.........we are so sorry for all that you have been going through. It is times like these that you really wish you could be in the same town to help and support one another....
Thank you so much for connecting with us and letting us know what you are going through. We want you to know how much we love Charlie, Addison and you and Adam. You and Adam are such amazing parents and we feel so blessed to enjoy the growth of your sweet family.
Our hearts go out to you as you research the challenges and discover the best path for Charlie and your family . Know that you have our full support and love. We are so proud of you and can't help but believe your love and strong family will be a model for others.
Please let us know what we can do to support you.....
Be good to yourselves!
xox
Patty and JT
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You’re doing a great job - take it a stage at a time; he’ll grow up and you’ll all find your way. My all-time favorite line from Seinfeld: “Mother Nature is a Mad Scientist”
Love you -
Randy Turner
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Baby sister,Let nobody change your mind if you have that mother instince about your kids.Thats why God gave that gift to mothers. God knows that you and Adam can handle this.He will not give you something that you can not handle.God has a plane for Charlie and you and your family.Just thank about it.God gave you and Adam 2 of his kids to take care of and he believes in you and Adam to take care of.God is telling you my daughter you will take care of my special little boy, because you can.God believes in you so believe in him and let him guide you and Adam.There is a verse that I like that is in the bible"numbers 6:24-26 My the lord bless you and keep you, My the lord make his face to shine upon you and to be gracious to you, my the lord lift up his countenance upon you, and give peace. my email keith72chandler@hotmail.comYour big brother,Keith
And we will all live our lives to the fullest. I feel that this experience will only make us stronger (ALL of us, including little Addi) and bring us closer together as a family. We are so very lucky to have such supportive friends and relatives through all of this.
Now, by way of background, I will spend a little time explaining just how we got here.
I think I knew something was "not right" for the last 6 months or so, but, Charlie being my first child and having no experience with typical child/toddler development, I was never sure. Plus, with Charlie it was always hard to tell because he has always talked and has always been affectionate. He is not prone to severe or frequent tantrums (just about what an average 2-3 year old would have during the course of a day), and did not seem overly stimulated or prone to sensory overload. He progressed according to schedule and was actually ahead of most of his friends through 2 years of age. In fact, and I'm not ashamed to admit it as I know most moms think this from time to time. . . I thought he was BRILLIANT. I really did (and still do). He had quite an attention span and would sit and look at books for long periods of time. He absolutely loved it. He knew the entire alphabet before he was 2 years old as well as all of his colors and shapes. . . and I'm talking not just circle, square, triangle. . . he knew optagon, pentagon, rectangle, etc. He was quite talkative, pointed at everything and told me what it was. And his memory was definitely above par. He was quoting commercials at a very early age as well as singing whole snippets of songs.
I remember one incident quite well. Charlie had just turned 2. He picked up a Bank of America business card I had lying on a table. He stared at it for some time and then got a big smile on his face. He walked up to me and handed me the card and said "Bank America." I said "What?" and he very clearly repeated "Bank America." How in the heck did this kid figure that out??? Now I realize that he recognized the Bank of America emblem (the little flag). He must have seen a T.V. commercial with it. . . but to connect the two together (a t.v. commercial to a business card and then REMEMBER that it was Bank of America) was quite advanced I thought.
Knowing what I know now, I do believe some of these behaviors were possible red flags. When Charlie started pre-school in August, 2008, I believe his regression had already begun even though we did not know it at the time. In November, 2008 I had a parent-teacher conference with Charlie's pre-school teacher. I left feeling very troubled. I half expected the teacher to tell me that my child was brilliant, by far the smartest in the class. But that's not what happened. Instead, the teacher expressed concerns that Charlie did not seem to pay attention, walked in circles a lot, did not engage in imaginative play, etc. I did not like the tone in her voice so I asked her "Should I be worried?" Her response. . . "I want to keep my eye on him." That was my first true moment where I thought maybe something was wrong. I will remember that statement as long as I live. She tried to placate me somewhat by saying it was early in the year, he was still adjusting. . . but I could just tell she thought something may be wrong.
Still, he was social with us, talked a lot and was very loving, so I kind of put it off. I would say a month or two later when I was picking him up from school, the teacher asked me "Does he ever talk about school or what he does here?" I told her yes, because he did. . . kind of. The more I thought about it though, he really just repeated or echoed what he heard throughout the day. For example, he would sing snippets of the songs he heard or statements he heard others say throughout the day. It was kind of funny because I always knew which kids were getting in trouble as Charlie would come home and say "Max, sit down!" or "No no Sydney!" He was saying the months of the year, which I knew he learned at school so I thought everything was fine.
But there was still a nagging feeling in my gut. I was started to get really frustrated that Charlie would not "talk" to us. Yes, he said words all of the time, but he never held a conversation beyond "want some milk," "want some juice," "want to go for a bike ride" (or telling us in general what he wanted). He never asked questions and never answered questions. In fact, when you asked him a question he either paid no attention to you or looked at you with a complete blank expression on his face. But he was talking. . . so, again I thought he had to be fine. . . he was just not interested in having a conversationg with me yet. But the more I saw his playmates, the more I thought it was just not quite right.
I was very frustrated at Christmas when he was not into Santa (I do think he was interested because he would stare at him and listen very intently when you would talk about him, but, again, no questions or real show of excitement), and not really into opening presents. . . in fact, very little excitement about the presents at all . . . not really what I would consider typical for a 2 1/2 year old. Again, we chalked it up to it's his age and next year he will be really into it. Same reaction at his 3rd birthday party. Very little interest in his presents or even opening them (with the exception of one golf game. . . and now he will sit down and paint with some of his new art supplies if I suggest it to him).
This combined with some behaviors I could only classify as odd were really starting to freak me out. He had this habit of flapping his hands. At first it was kind of cute because he really just did it when he was excited. It was his own little personal barometer. The more he flapped, the more excited he was. Then he started another interesting habit of moving his fingers back and forth and looking at his hand intently while mumbling to it. This seemed to really tickle him, and it did me too at first until he was really starting to do it all the time. He also kept walking in circles and spinning and started walking on his toes from time to time. All of this combined with the constant repeating, no conversation and diminshing eye contact really hit it home that something was wrong.
I asked to speak to his teacher again. She said it was time to dig further. So. . . we did. I spoke to his pediatrician at Charlie's 3 year check-up, and she agreed it did sound like a PDD (pervasive developmental disorder) and recommended an evaluation by a developmental pediatrician. Then began the fun process of trying to find one of these doctors and dealing with their waiting lists.
At this point I had already done a lot of my own research and knew Charlie was ASD. This was an extremely hard time for me and Adam. We knew our baby was likely autistic, and we were scared out of our mind. Neither one of us knew what it meant, and we were both fearful of the future and all of the horror stories you often hear associated with autism.
Everything I read said EARLY intervention is essential. So, I started freaking out about waiting too long to see a doctor to get a dx. We decided to get a private evaluation and just pay out of pocket for it. I just could not justify waiting months and losing that precious time when we could already have him in therapy and be addressing his developmental issues.
I became the ASD research fanatic. What therapies were out there? What is this biomedical stuff and what the heck does GI health have to do with the brain or autism? What can we do RIGHT AWAY to help. I admit I freaked myself out a little bit. I held up well for the first week and then crashed hard. It was a Monday and Adam was supposed to go out of town for work. He never made it. I was in no shape to be left alone with 2 children. I could not go 10 minutes without breaking down. I just got so scared about Charlie's future. I worried he would be lonely and unhappy and what would happen if my baby became unresponsive and didn't want me to touch or hug him. I'm not sure what happened in the space of a day, but by the next day I felt so much better. I just had a feeling in my gut that it was going to be o.k. That nothing has really changed -- Charlie is still Charlie and everything will work out. I think I just needed that breakdown to bring it all into perspective.
Charlie had his initial evaluation with the developmental pediatrician on April 15. Her name is Nancy Carnavale. I liked her and found her to be very friendly and professional. She said Charlie is definitley on the spectrum, but will have to "score" him on the DSM-IV to see whether he falls under autism or PDD/NOS (pervasive developmental disorder not otherwise specified). Both autism and PDD/NOS are on the spectrum of autism disorders.
Almost immediately (in fact BEFORE we met with Dr. Carnavale), we changed his diet to GFCF (which means no dairy, no wheat or gluten). Honestly, this has been the hardest part of this process so far -- figuring out this diet!!! Adam and I have had a time with it! I think we could both qualify for PhD's in reading food labels at this point. It's been hard for Charlie too (no more cheese pizza or mac and cheese -- at least for now), but thank goodness he is young and doesn't really understand that his whole diet has changed. He has gone with the flow for the most part, and we have been able to find snack foods that he likes. Sweetbay actually has a pretty good Gluten Free section as does Whole Foods. I stumbled on a health food store in Carrollwood called Abby's . . . it was a GFCF paradise. I bought out almost the entire section. (We made pancakes this morning from a GFCF mix I bought from Abby's, brand name is Kinnick Kinnick. They were EXCELLENT! Some of the best pancakes I have ever made.) We won't talk about what a hit this has made on our grocery bill. Suffice it to say, this stuff is not inexpensive and I have already dropped hints to relatives to feel free to send care packages of GFCF foods. Ha!
After all this, I finally got an appointment with the only DAN! doctor in Tampa. . . We couldn't get in until October (hopefully sooner -- we're on the waiting list). This doc highly recommends the removal of soy as well. . . as do many other sources since it so closely mimics the effects of casein. So, now we are starting to wean that out as well. Whew!
Now I am trying to figure my way through this maze of supplements that are recommended for kids on the spectrum. There is a ton of information out there. The DAN! docs can do all of the testing to tell you what food insensitivites/allergies your child has and test for high yeast levels and heavy metals in the blood. There is so much out there that can affect these kids. . . it really is amazing. (And quite sad that most "coventional" doctors won't even discuss these options with you and have a pretty condescending / negative attitude about the whole thing. This experience has taught me that most doctors really don't know what they're talking about. No doctor knows a child like his parents do.) Right now we have started Charlie on Cod Liver Oil and I will start him on Super Nu Thera (a multivitamin) tomorrow. After that we will probably add a probiotic, and then I think I'll wait for recommendations from the DAN! doctor as to what else, if anything, to give him. A lot of spectrum kids are also on digestive enzymes and a variety of other supplements depending on what the lab tests show. Everything I have read recommends organic foods and limitations on food dyes and other artificial ingredients (which we should ALL do anyway). The digestive health/autism link is a little too much to get into in the context of this blog, but if you go to just about any autism website, you'll see a ton of information about it. All recommend starting with the GFCF diet.
After about 2 1/2 weeks on the diet and just over a week of the CLO, I do think I see some changes for the better in Charlie. His attention span seems to be improving as well as his eye contact. His pre-school teacher even commented that his eye contact was better this past week. He sat down with me 3 nights this week and pointed to pictures in books in response to my questions. . . even if he wasn't overly enthused about it. A couple days ago, he even told Adam "can't open the door" whe both of his hands were full and he couldn't get outside. He also counted in Spanish with me the other day. . . something he had not done for a while. It may be too soon to tell, but it definitely gives me some hope. He definitely seemed very "hyper" for about a week or so, but I have been reading that this is not abnormal as he is likely going through withdrawal from the casein and gluten. Thankfully the last 2 nights the hyperactivity was much better.
Charlie will go this week for an occupational therapy evaluation. Hopefully we can get that therapy started right away. We are also going to an ABA therapy center to "check it out" and possibly start Charlie there for ABA therapy. Dr. Carnavale also wants Charlie to see a neurologist just to make sure everything is okay since his regression was a little later than is normally seen. We have an appointment in late May with a pediatric neurologist.
We are also checking out what services the public school system may be able to offer us. Once a child turns 3 and has been diagnosed with a developmental delay, they are usually eligible for services through the county. We're checking out all avenues.
We go back to Dr. Carnavale on May 4 for the "official" dx, however, she has already recommended OT, speech therapy and ABA therapy. The DAN! doctor will likely take the lead on all biomedical interventions. I have heard he's pretty great. His website is quite handy http://www.wholisticpeds.com/.
In closing, I just wanted to share a few emails we received in response to the news of Charlie's ASD dx from some of our friends and family that I found particularly touching. You guys are all wonderful and we would not be able to make it through this without you.
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My dear friend.I found myself reading and re-reading your note below. I can only imagine a smiggin of what you and Adam are trying to "process" right now and hope you always remember we love all of you so very much...First off, I want to thank you so much for sharing and for trusting your recent news with me. I can only tell you that Charlie IS a beautiful and spectacular boy. He is so blessed to have such an amazing and dedicated mother and incredible and loving family. I feel so proud to call you my friend!!! Your strength, courage and positive attitude inspire me beyond words. As far as I can see it, Charlie has already crossed over his first and important hurdle by having your undying love and support during this unknown and confusing time. I am so confident that things will be okay. Charlie is one of the kindest boys Brianna and I have ever met and he is an extraordinary child who is not only smart, personable and sweet but intelligent and brave as well - geeze, just like his mommy!!! It will undoubtively be a journey but please know that you have many people who love you and who will be there for you each step of the way. Whatever you need, I amhere... I truly believe we all have an angel guarding over us and for your son, I know he must have many... He is who he is... a little boy who lights up the room whenever he enters. A little boy we are so lucky to call our friend. A little boy who to know, is to love...My thoughts and prayers are with you all during this challenging time. Always remember when one door closes, another will open. For you and your beautiful son, I know there will be many doors that will open.My love to you, Cher
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Tricia,
Earlier this afternoon, on my way to a deposition in Orlando, I had responded to your Tuesday e-mail about lunch. Shortly thereafter Sophia called me and told me about Charlie and the e-mail you sent her. She forwarded it to me and I just finished reading it.
First, you have our absolute total support and friendship. Whatever we can do for you and Charlie - just ask. I can only imagine how difficult this has been. Fortunately for Charlie, he has two very smart, loving and caring parents. I truly believe that a parent's love can help conquer just about anything and your unconditional love for your children would be obvious to anyone who has met you.
We need to get our families together soon. Of course, I would also love for you and I to get together for lunch when you are at work downtown, so just let me know what is convenient for you. Again, let us know if there is anything we can do.
-Mark
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Wow.........we are so sorry for all that you have been going through. It is times like these that you really wish you could be in the same town to help and support one another....
Thank you so much for connecting with us and letting us know what you are going through. We want you to know how much we love Charlie, Addison and you and Adam. You and Adam are such amazing parents and we feel so blessed to enjoy the growth of your sweet family.
Our hearts go out to you as you research the challenges and discover the best path for Charlie and your family . Know that you have our full support and love. We are so proud of you and can't help but believe your love and strong family will be a model for others.
Please let us know what we can do to support you.....
Be good to yourselves!
xox
Patty and JT
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You’re doing a great job - take it a stage at a time; he’ll grow up and you’ll all find your way. My all-time favorite line from Seinfeld: “Mother Nature is a Mad Scientist”
Love you -
Randy Turner
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Baby sister,Let nobody change your mind if you have that mother instince about your kids.Thats why God gave that gift to mothers. God knows that you and Adam can handle this.He will not give you something that you can not handle.God has a plane for Charlie and you and your family.Just thank about it.God gave you and Adam 2 of his kids to take care of and he believes in you and Adam to take care of.God is telling you my daughter you will take care of my special little boy, because you can.God believes in you so believe in him and let him guide you and Adam.There is a verse that I like that is in the bible"numbers 6:24-26 My the lord bless you and keep you, My the lord make his face to shine upon you and to be gracious to you, my the lord lift up his countenance upon you, and give peace. my email keith72chandler@hotmail.comYour big brother,Keith
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