Hi, I'm the second team member. My daughter also started with Dr. Goldberg and after four years I switched her to Dr. Russell at the NNY Autism Clinic. I was the Director of the clinic, still am actuallt, and I didn't want my child as a patient, however, her years of plateu and her out of control ADHD left us no other choice. She is a totally different girl now and it is one of my regrets that I did not do it sooner.
On this blog I am going to talk about my daughter's experience but I am also going to talk about running a clinic!!!
Thursday, January 29, 2009
Wednesday, January 28, 2009
Is my eyesight accurate???
Came in today from my shrink appt (a must have for most NIDS moms) only to find my 3 kids, all home from school due to a Maryland 'snow day' (forecast: snow all day; accumulation: 1 inch; therefore, CANCEL SCHOOL!!), playing Wii together. While this my be a commonplace occurance in other families, it's still shocking for me at times. They were laughing, joking, challenging each other and working together to defeat a common electronic foe. I faught getting the stupid Wii - just another soul sucking electronic gadget as far as I'm concerned. While I still regret giving in, I was surprised to see my older 2 getting along like they used to in their younger years......
Al and Kelsie are only 15 months apart. Al was a very, very easy infant and baby. I was rather bored staying home with him alone and thought it'd be more interesting with another child. Ergo, Kelsie's arrival not long after. When Kelsie was 10 months old she said her first word - 'bear'. I distinctly remember looking at her and telling her she was not allowed to talk since her brother wasn't talking yet. I was only half joking. Since then she's been leaps and bounds ahead of him socially and creatively. This has been an amazing thing and contributed greatly to his recovery. When they were toddlers and preschoolers, Kelsie would decide what they would play (house, airplane, store, etc), tell Al what they were doing, what to say, where to stand, what prop to use. Al would 'build' whatever they were doing - including the wiring and plumbing for the house if that was their game, the wiring for an airplane, etc. He was Mr. Concrete Reality and she was his imagination for dialogue and acting. Who needed social stories with Kelsie around? Then NIDS struck her around age 4, and we started her on the protocol. It worked fantastically until we started the SSRIs. Then the temper, PMS and Kelsie's fiery red-head personality all conspired to make her absolutely unmanageable. We found a dr on the east coast to do a neurospect, only to find out that her blood flow was way, way too much (what Dr. Amen terms 'Ring of Fire ADD'). We took her off the SSRIs, put her on antiseizure meds. This calmed everything down, the PMS eventually subsided to once a month, and she's controlling and chanelling her red-head tendencies. NIDS gave us back a bright eyed child, but also a difficult one to live with. I searched for more answers, found what she needed, and made the switch. We also switched to Dr. Russell at this point since I was veering away from the straight Goldberg NIDS protocol (and Dr. Russell was within driving distance....).
My perspective? Way more stress than I ever want to go through again anytime soon. Goldberg's approach was working.....but I wanted perfection. It's hard to try something new, hard to go against what a dr recommends. After so many doctors misdiagnosing Al I decided I knew more than they did about my children, and took over as coordinator of their health care and recovery. Incredibly arrogant of me, and I'm not an arrogant person. It's amazing what one can do when there's no other choice. I love my children and want the best for them. I have grown tremendously because of them and the things I've had to do to recover them. What's Pooh Bear's saying? "You're braver than you believe, and stronger than you seem, and smarter than you think". I'm very tired of being all those things, but I'm not at the end yet. Days like today make me remember why I need to hold on for a little bit longer - my kids are fantastic and deserve me giving them 150%. Today was a good day.
Al and Kelsie are only 15 months apart. Al was a very, very easy infant and baby. I was rather bored staying home with him alone and thought it'd be more interesting with another child. Ergo, Kelsie's arrival not long after. When Kelsie was 10 months old she said her first word - 'bear'. I distinctly remember looking at her and telling her she was not allowed to talk since her brother wasn't talking yet. I was only half joking. Since then she's been leaps and bounds ahead of him socially and creatively. This has been an amazing thing and contributed greatly to his recovery. When they were toddlers and preschoolers, Kelsie would decide what they would play (house, airplane, store, etc), tell Al what they were doing, what to say, where to stand, what prop to use. Al would 'build' whatever they were doing - including the wiring and plumbing for the house if that was their game, the wiring for an airplane, etc. He was Mr. Concrete Reality and she was his imagination for dialogue and acting. Who needed social stories with Kelsie around? Then NIDS struck her around age 4, and we started her on the protocol. It worked fantastically until we started the SSRIs. Then the temper, PMS and Kelsie's fiery red-head personality all conspired to make her absolutely unmanageable. We found a dr on the east coast to do a neurospect, only to find out that her blood flow was way, way too much (what Dr. Amen terms 'Ring of Fire ADD'). We took her off the SSRIs, put her on antiseizure meds. This calmed everything down, the PMS eventually subsided to once a month, and she's controlling and chanelling her red-head tendencies. NIDS gave us back a bright eyed child, but also a difficult one to live with. I searched for more answers, found what she needed, and made the switch. We also switched to Dr. Russell at this point since I was veering away from the straight Goldberg NIDS protocol (and Dr. Russell was within driving distance....).
My perspective? Way more stress than I ever want to go through again anytime soon. Goldberg's approach was working.....but I wanted perfection. It's hard to try something new, hard to go against what a dr recommends. After so many doctors misdiagnosing Al I decided I knew more than they did about my children, and took over as coordinator of their health care and recovery. Incredibly arrogant of me, and I'm not an arrogant person. It's amazing what one can do when there's no other choice. I love my children and want the best for them. I have grown tremendously because of them and the things I've had to do to recover them. What's Pooh Bear's saying? "You're braver than you believe, and stronger than you seem, and smarter than you think". I'm very tired of being all those things, but I'm not at the end yet. Days like today make me remember why I need to hold on for a little bit longer - my kids are fantastic and deserve me giving them 150%. Today was a good day.
Monday, January 26, 2009
Birthdays
Al turns 15 in 23 hours. Yikes. We celebrated it tonight, and it was quite civilized. We went to Red Robin, since they have unlimited fries that are GFCF. They even let us bring in a gfcf cake and the waitresses (the young, cute ones gathered especially by our server) sang him 'happy birthday'. He seemed unphased by all the attention, took a bite of his cake, then declared that he was full (way too many of his favorite fries). We've discovered which restaurants will accomodate the various food allergies the kids have, and we've gotten brave about asking whether or not we can bring our own food in when they aren't able to provide what we need. After all, we're spending a decent amount of money and we always tip well. The 3 children didn't fight, whine or tantrum. They even engaged in conversation and tried not to call each other 'loser' every other word. Joe, their dad, and I have been separated for over a year and this year's birthday went much better. We laughed, talked, and enjoyed our kids. Due to genetics, our kids are all tiny. When Kelsie, Audrey and I arrived to get a table (waiting for Joe and Al to arrive from Al's shrink appt) the server asked if we needed 2 kids menues. I said just one, that since Kelsie is almost in high school she wouldn't be needing one. The server apologized a million times and Kelsie and I laughed the whole way to the table. At some point Kelsie will appreciate looking 8, but not while she's 13.
What was so special about tonight? Our family has found a new rhythm. The kids are great to take out, and then off they went to spend the night at their dad's. This gave me the time I needed to go climbing indoors. A great, great stress relief. After an hour of climbing we decided to practice self-rescue techniques for our trip to Red Rocks, near Vegas, next month. My first out west climbing experience, which I'm excited and nervous about. But I got sidetracked. Al, the one farthest along on the autistic spectrum originally, was social, funny, engaging, appropriate, bright eyed, fun. Audrey was absolutely indistinguishable from other 8 year olds, and Kelsie is quite charming and calm - not always the case before.
Birthdays past: Al watched more than participated. Whenever we'd go to other parties, he'd sit on my lap and watch. When leaving, he'd proclaim he had the best time ever. He just needed to watch. I thought it would never end and constantly worried he'd never fit in. One birthday comes to mind. We had just self-diagnosed Al as autistic March 23rd after reading Unravelling the Mysteries of Autism by Karyn Seroussi and had gone gfcf with Al on the 24th. After horrible withdrawl, Al became brighter and clearer just in time for Audrey to be born March 30th (3 weeks early- kinda stressful time for me). Kelsie's party was April 28th, we checked all the food, but weren't good about hidden gluten. We never even thought deli lunch meat would have wheat - who knew? Al had a great time at the party with Kelsie's friends, was very social now that he was on this new diet, and ate about a pound of meat. I was thrilled because he never ate protein other than dairy, and we were off of that now. Kelsie got a tape recorder as a present and they went off together after the party to record stuff. They played it for us later and it was hilarious, but I noticed how clear Al's speech was (at this point he had been in speech therapy for a year). The next morning they got up bright and early and decided to record more, only they recorded over the last part of the previous night's stuff. They came in and woke me up to play their new stuff for me, starting with last night's. When it switched to the morning's stuff, Al's speech was unintelligible. Even he couldn't figure out what he was saying and got very frustrated. I will never forget that tape. In horror, I started researching and discovered the gluten in lunch meat. He had been doing so well. But now I had proof of how foods could adversely affect his progress.
That was before we started on NIDS. But, believe me, whenever Goldberg told us to watch his diet or eliminate a food, we did it immediately without question. I had seen the devastating effects food could have on my son.
What was so special about tonight? Our family has found a new rhythm. The kids are great to take out, and then off they went to spend the night at their dad's. This gave me the time I needed to go climbing indoors. A great, great stress relief. After an hour of climbing we decided to practice self-rescue techniques for our trip to Red Rocks, near Vegas, next month. My first out west climbing experience, which I'm excited and nervous about. But I got sidetracked. Al, the one farthest along on the autistic spectrum originally, was social, funny, engaging, appropriate, bright eyed, fun. Audrey was absolutely indistinguishable from other 8 year olds, and Kelsie is quite charming and calm - not always the case before.
Birthdays past: Al watched more than participated. Whenever we'd go to other parties, he'd sit on my lap and watch. When leaving, he'd proclaim he had the best time ever. He just needed to watch. I thought it would never end and constantly worried he'd never fit in. One birthday comes to mind. We had just self-diagnosed Al as autistic March 23rd after reading Unravelling the Mysteries of Autism by Karyn Seroussi and had gone gfcf with Al on the 24th. After horrible withdrawl, Al became brighter and clearer just in time for Audrey to be born March 30th (3 weeks early- kinda stressful time for me). Kelsie's party was April 28th, we checked all the food, but weren't good about hidden gluten. We never even thought deli lunch meat would have wheat - who knew? Al had a great time at the party with Kelsie's friends, was very social now that he was on this new diet, and ate about a pound of meat. I was thrilled because he never ate protein other than dairy, and we were off of that now. Kelsie got a tape recorder as a present and they went off together after the party to record stuff. They played it for us later and it was hilarious, but I noticed how clear Al's speech was (at this point he had been in speech therapy for a year). The next morning they got up bright and early and decided to record more, only they recorded over the last part of the previous night's stuff. They came in and woke me up to play their new stuff for me, starting with last night's. When it switched to the morning's stuff, Al's speech was unintelligible. Even he couldn't figure out what he was saying and got very frustrated. I will never forget that tape. In horror, I started researching and discovered the gluten in lunch meat. He had been doing so well. But now I had proof of how foods could adversely affect his progress.
That was before we started on NIDS. But, believe me, whenever Goldberg told us to watch his diet or eliminate a food, we did it immediately without question. I had seen the devastating effects food could have on my son.
Sunday, January 25, 2009
Welcome
This is my first post, on my first blog. I'd like to share my story with you in the hopes that it helps you through your journey with NIDS, gives you a few laughs along the way, and lets you see that NIDS can have an ending (believe me, I didn't always know that while trying to get meds into my kids and running them from therapist to therapist). Is it a happy one? Mostly. I now have 2 teenagers, so it's at least always entertaining, one way or another.
I'm a mom of 3 NIDS kids. They are now 14, 13 and 8, but they began on the NIDS protocol at 5 yrs, 4 yrs and 17 months respectively. We began with Dr. Goldberg in LA, then switched toward the end to Dr. Russell in New York.
This all began with my oldest, Al, when he was quite young. We never understood his sensory overload problems, and many tantrums. Other odd behaviors popped up along the way, with losing language the most alarming. He never totally lost it, but when he began talking again his pronunciation was quite impaired. By the time he was 5 his pediatrician finally told me he had autism. He felt there was no effective treatment, so why tell the parent until school age. Urg. After seeing Dr. Goldberg (who, at that time, travelled to MD to see patients - easier for us to get to than LA since we were living in the Chicago area at the time) we realized that our second child, Kelsie, wasn't particularly healthy either. Goldberg went on about 'bright, clear eyes', waking up rested, etc. When we got back home we had Kelsie tested, even though her language and social skills were fantastic. Sure enough, her bloodwork came back positive and we started her on the protocol as well. My littlest one, Audrey, was only days old when we discovered she was allergic to milk. Then as she went on solid foods, we noticed a gluten intolerance. I watched her very, very closely and by the time she lost 5 words from her repertoire, I made an appt with Goldberg for her too. She was 17 months old. What a difference early diagnosis makes.
As a newly single mother of these 3 challenging kids, I'll write what I can when I can. I'm hoping other 'old timers' will share their stories on this blog to give the 'new timers' hope and inspiration. My goal is to post twice a day, continuing to tell you the history of our journey, as well as a story from that day. A bit of the past and what we're dealing with currently. I'd like to have the time to write out their entire history before starting on the present, but that's totally unrealistic for me time-wise right now.
So.....here goes.
I'm a mom of 3 NIDS kids. They are now 14, 13 and 8, but they began on the NIDS protocol at 5 yrs, 4 yrs and 17 months respectively. We began with Dr. Goldberg in LA, then switched toward the end to Dr. Russell in New York.
This all began with my oldest, Al, when he was quite young. We never understood his sensory overload problems, and many tantrums. Other odd behaviors popped up along the way, with losing language the most alarming. He never totally lost it, but when he began talking again his pronunciation was quite impaired. By the time he was 5 his pediatrician finally told me he had autism. He felt there was no effective treatment, so why tell the parent until school age. Urg. After seeing Dr. Goldberg (who, at that time, travelled to MD to see patients - easier for us to get to than LA since we were living in the Chicago area at the time) we realized that our second child, Kelsie, wasn't particularly healthy either. Goldberg went on about 'bright, clear eyes', waking up rested, etc. When we got back home we had Kelsie tested, even though her language and social skills were fantastic. Sure enough, her bloodwork came back positive and we started her on the protocol as well. My littlest one, Audrey, was only days old when we discovered she was allergic to milk. Then as she went on solid foods, we noticed a gluten intolerance. I watched her very, very closely and by the time she lost 5 words from her repertoire, I made an appt with Goldberg for her too. She was 17 months old. What a difference early diagnosis makes.
As a newly single mother of these 3 challenging kids, I'll write what I can when I can. I'm hoping other 'old timers' will share their stories on this blog to give the 'new timers' hope and inspiration. My goal is to post twice a day, continuing to tell you the history of our journey, as well as a story from that day. A bit of the past and what we're dealing with currently. I'd like to have the time to write out their entire history before starting on the present, but that's totally unrealistic for me time-wise right now.
So.....here goes.
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