A Story about a James

As some of you may know, I am single mother of two children with autism. I live and breath autism. I spend any spare time I have speaking with other parents in finding ways to care for our children. Today, I received an email from another mother that really touched my heart. Her son, James, had his first day at football practice.

But first, I want to tell you more about James.

Hello, my name is James and I will be 17 years old next week. I came to live with my parents when I was three and they adopted me. Boy they got more than they bargained for! I am diagnosed with Autism, Cerebral Palsy, Epilepsy, Mental retardation (overall development of a 6-7 yr old), an unknown slow Bowel Disorder, and ADHD. Oh ya and also what my parents lovingly call ETH (explosive teenage hormones).

Well, when I woke up this morning, I found this email form James's mother in my email inbox. This is a must read.

Well today was James's first day with the football team. Practice started at three but we did not arrive until four. This gave the coach time to tell the team about James.

James was so excited until he got out of the van. Anxiety set in fast. We took our time walking over to the practice field. James would stop and grab my arm so hard I thought for sure I would have bruises. We gave him his time to adjust and he would start to walk again. Than stop again. We finally were in front of the field, but up against the school building.

We sat there for about ten minutes when one of the assistance coaches came over and introduced himself and invited James to join the team on the side line. James said "No thanks, not now" I explained to the coach it may take a few trips just watching the guys before James would feel safe be next to the team, He said no problem.

For those not familiar with autism, many ASD people also suffer from anxiety and it is very difficult for them to change their routines. This was especially difficult because meeting new people (especially alot of them at once can produce sensory overload.

About 5 minutes later the whole team lined up and walked over to James. They all said "Hi James, welcome to the team'" and then a couple off them introduced themselves. I explained to them that the autism makes social situations hard for James to read, but once he was used to coming here and seeing you all he will have an easier time. The quarter back told James you take all the time you want buddy, we will be here everyday looking for. They then went back to the field. James continued to watch then and look for bugs.

Shortly the head coach yells over "Hey James, you want to get the water turned on for the guys?" James loves feeling like he is helping and loves playing in water more. He walked over to the watering line and turned it on, and stood back a litle bit. The team then walked over, drank and wet their heads. James found this very funny. He turned it back off and this time wanted to stand closer to the line. We sat there watching the guys. When the next water break came coach asked him again to get the water ready and James gets right up and starts the water. This time though he puts his hand out to a couple of the guys and gave them high fives.

Practice was almost over and James was standing on the sideline with the other boys! It was time to go and he waited for the coach to come over and told the coach "see you next Wednesday" The coach asked if he would be back next Thrusday and James said "you are stuck with me" LOL.

Overall it was a pretty good 1st day. He has agreed that I can pick him up at school so he could be here when the guys arrive. The 1st home game next Friday, don't know if James will feel ready to be on the side line for that game. We are going to let us know when he feels okay for this.

Boy overall I think it was a really cool day and he enjoyed it.

I nearly cried my heart out when I read this. I am so happy for James and his mother, Becky. I also want to let all of you know that she is also trying to raise money for an assistance dog for James. James has multiple difficulties with seizures and he is also what we call a "runner". Like my son, many ASD children love to just run out of the house and they have no sense of danger. His new assistance dog will help in making sure that James is safe if he does manage to escape his house. This is a major worry for most ASD parents because some of these children seek out dangerous places like lakes and streams. One ASD boy was found dead in a creek last month. I have an idea of what James's mother goes through because I had to call the police three times in a two month period because my eight year old son had escaped. So.... if you can, please stop by James's webpage and either give a small contribution for an assistance dog for him or at least post a comment on the website and wish the family well. James really enjoys reading the comments. He is really a special kid with special parents.

•  I do accept tips

  Thanks in advance. Oh, and please recommend this diary because I really want to help Becky raise money for James's dog. She is a super mom but she really wants to get out of the doghouse because James really wants that dog and was mad at her last week because she hasn't had enough time to raise money for it.

  by franziskaner on Thu Aug 30, 2007 at 07:50:04 AM PDT

  •  These dogs are wonderful

    I've had a couple of college students in my classes who had a dog for assisting them with various problems other than vision impairment. Those beasts are truly wonderful. Their training is so specific to the individual; I marveled at their ability to take care of their person, while still being a wonderful companion.

    Although the dogs that I saw were much like lead dogs, they did very different things, including some "calming actions" for their persons. I hope James gets his dog!

    by Kidspeak on Thu Aug 30, 2007 at 10:14:28 AM PDT

  •  I also forgot to add

    that when you make a comment on James's webpage. He likes to know where you are located. He has a map and he enjoys looking up the places on the map where you are from.

    by franziskaner on Thu Aug 30, 2007 at 11:45:04 AM PDT

  •  It was my honor

    to add the "Rescued" tag to this diary -- which I would not have found were it not for the Rescue Rangers.

    Great story -- we hear so many stories about "jocks" being cruel to those different from them that it's wonderful to find out that there are young men who recognize our joint humanity. And kudos to the coaches for being willing to work with James and to prepare the path for him.

    Go James -- go team! :)

    by Cali Scribe on Fri Aug 31, 2007 at 04:45:32 AM PDT

    •  Holy Cow!

      Thank you so much for doing that!

      by franziskaner on Fri Aug 31, 2007 at 05:36:16 AM PDT

•  Google Noah's Assistance Dogs

  located in Crete, Ne.  Noah's dogs are almost free and worth you or your friend contacting the organization to see if one of the dogs would be suitable for James.  The owner and trainer is a gifted "dog whisperer."

  by JFinNe on Thu Aug 30, 2007 at 08:04:03 AM PDT

  •  Thanks JFinNe

    but James's mother and his neurologist have checked into every dog assistance program out there. Unfortunately, James has multiple medical issues that go along with the "running". The dog is very expensive because he has to perform multiple tasks that includes behavioural disruption, seizure disorders, mobility issues, etc.

    by franziskaner on Thu Aug 30, 2007 at 08:12:37 AM PDT

    •  Check it out anyway, please

      It wouldn't hurt to just check the site out.  They train the dogs to meet specific conditions for each person.

      by JFinNe on Thu Aug 30, 2007 at 08:23:53 AM PDT

      •  I will send Becky the information

        but I think she has checked this one out. We were discussing this with other parents of ASD children and the parents came up with many recommendations for an assistance dog. I will send her the information and check my emails to see if this specific organization was discussed. Again, thanks.

        by franziskaner on Thu Aug 30, 2007 at 08:27:13 AM PDT

•  I had my moment last night

  I have Asperger's Syndrome (high-functioning Autism Spectrum disorder,)and ADHD. It's relatively "mild," and at age 55, I've learned a lot of coping mechanisms, and am comfortable in most social situations -  I'm the life of the party, at times!

  yesterday afternoon, there was a BBQ for my son'e new, private high school. I knew only a couple of people when I got there, and was waiting for my wife and children to show up.

  I spoke to one man I knew, then got a nametag.

  then it hit - I became sort of paralyzed, couldn't think of what to do, couldn't approach anyone, nothing.

  I went and sat down in my car, confused and upset; this rarely happens. then I pulled myself together, and made a plan: I would go and stand on line for food, chit-chat with my neighbors in line, then sit with whomever.

  I did just that, and it went fine, and then my family showed up.

  but for a moment, it was pure hell.

  My daughter is an "Aspie," much more pronounced than it is with me, and has just started middle school. It's a very tough row to hoe, especially for girls, who bear far more expectations for appropriate social behavior than do boys.

  by condoleaser on Thu Aug 30, 2007 at 08:15:51 AM PDT

  •  My oldest son has

    full blown autism and he gets so nervous that he cannot eat lunch at school (no matter how hungry he gets). He comes home starving every day. He is also now getting seizures which puts my stomach on edge. His MRI is scheduled in October. It is so heartbreaking. Thank you so much for sharing. I sometimes wonder if I have mild Aspergers because I have had my frozen moments as well. There was a paper released last month regarding spontaneous mutations and if a family has more than one child on the spectrum, it is more likely to come from the mother. This is a must read. By the way, my children and I are going to take part in the AGRE research program. I hope our DNA can help contribute to the science of autism.

    by franziskaner on Thu Aug 30, 2007 at 08:24:14 AM PDT

    •  Hang tight with the seizures

      MRIs and EEGs only trace about 40% of the seizures, so don't count too heavily on them.  Seizures can start occuring with the onset of puberty - usually only last about two years and the medication is really pretty good for controlling them.  May have to screw around with the doseage and timing, but it's worth it.  Listen closely to the neurologist.  There are triggers that can be controlled in the teaching environment as well as home.  Something as simple as dehydration can trigger them.

      And Good Luck and I wish you an abundance of patience.  And yes, I know far more about them than I ever wanted to because of my kidlet.

      by kfred on Thu Aug 30, 2007 at 08:31:54 AM PDT

      •  That is so encouraging to know

        that the seizures may be temporary. I am so worried that he may have to be medicated for life. Matthew had an EEG done in May and it definitely showed generalized seizure activity. His neurologist is top notch and explained to me that generalized seizures are common with ASD children. I don't mean that the majority of ASD children have seizures but the ones that do have generalized seizures more so than seizures that affect only one part of the brain.

        My kid also has problems with fungal infections and I noticed that he has improved (behaviourally) after being treated with anti-fungal medication. He does so well and concentrates better when he is in good health. I will make sure that he gets plenty of fluids.

        by franziskaner on Thu Aug 30, 2007 at 10:17:18 AM PDT

        •  Typical treatment

          Two years of meds, weaning off over two years and then done.  If your son's are traceable (MRI/EEG-wise) it sounds like they are more in the tonic-clonic (grand mal) rather than "absence" (petit mal). And I'm using the old terminology.

          Absence ones are less than 30 seconds in duration, though some kids can have 50-100 per day.  That means they miss out on a lot of school and general activity.  Has to be a very odd and scary sensation for the kidlets.

          That fungal infection is an interesting thing.  Don't know what to make of it.

          Heredity/Genetics may have a relationship.  Some studies lead in that direction and we are aware of a genetic connection in our case.

          Mucho luck to you franziskaner.  You know I'm good for research on the topic.  I've given two training sessions to teachers already just so they know what's up.

          One of the phrases I used:  And here you are thinking you are the most enthralling teacher with an exciting subject and you have a kid daydreaming  and ignoring all your words of wisdom.  Stroll by the desk of the kid and drum your fingers and see if you get a reaction.  If you do, spice up your lesson, if not - let the parent know.

          Actually I think I used the word "titillating".

          by kfred on Thu Aug 30, 2007 at 01:13:48 PM PDT

          •  Another issue with absence seizures

            is to watch for the rolling of the eyes under the eyelids.  I spotted one in a kid that way.  It's very distinctive--I saw a video of an absence seizure where that was one thing that happened--and then I saw it in a kid suspected with absence seizures.  It's not at all like anything else kids do.

            by joycemocha on Thu Aug 30, 2007 at 06:46:53 PM PDT

            •  That's what my kid did.

              I had no idea what that was but my mother-in-law noticed it and told me to see the doctor about it. My developmental pediatrician prescribed an EEG and after the results, we went to the neurologist.

              by franziskaner on Thu Aug 30, 2007 at 06:57:36 PM PDT

            •  Absence

              Funny. I had Absence seizures as a child and now have a child with Asperger's. I can say that for myself, that I eventually "adapted" to the seizures and was able not to miss very much. I eventually "outgrew" my seizures in my teens. There is so much mythology and misinformation out there about autism, ASD, and Asperger's. Actually, the latest study appears to correlate better with advance paternal age than maternal age.  Congratulations James!

              by never forget 2000 on Thu Aug 30, 2007 at 08:53:28 PM PDT

              •  Regarding age.....

                the study on spontaneous mutations appear to be the major culprit in the majority of autism cases since both sides do not have a family history of it. When testing the parents, they do not show the mutations so they think it is occuring in the egg or sperm of either of the parents or a combination of both. This is where age plays a factor. If a family has more than one member on the spectrum, they think the mother may be the carrier since unaffected mothers tend to reproduce more so than males because most males with the mutations are affected. The "carrier" mother's mutations were perhaps caused by a spontaneous mutation from her parents. Does that make sense?

                by franziskaner on Fri Aug 31, 2007 at 08:22:59 AM PDT

                •  Do you have a link for that? nt

                  by never forget 2000 on Fri Aug 31, 2007 at 02:10:40 PM PDT

                  •  Yes.

                    Here is one from autism speaks..

                    by franziskaner on Fri Aug 31, 2007 at 05:16:19 PM PDT

          •  You are very wise.

            At this time, I have been keeping a look out on research papers regarding the genetics and links to autoimmune disorders. It is actually an exciting time because researchers have access to so much more data (thanks to the human genome project). I am interested in the autoimmune relationship since both sides of my kiddos family have these problems (hence my obsession). There has been some great research which shows that ASD people and other autoimmune sufferers have elevated cytokines,etc. It is becoming more difficult to research though because many people take the words autism and autoimmune disease and go nuts on the vaccination-thimersol-link. Since I am not a scientist, it is very difficult for me to distinguish between junk and legitimate science.

            by franziskaner on Thu Aug 30, 2007 at 07:15:15 PM PDT

    •  when our daughter,

      then our son, was dignosed with Asperger's, we learned much, and one of the things we learned is that it's inherited. that suddenly made a lot of things fall into place for me, and I gained some invaluable self-knowledge.

      it is fabulous to know.

      by condoleaser on Thu Aug 30, 2007 at 08:32:40 AM PDT

      •  Another part of that

        The "inheritance" doesn't mean it comes from only one side of  your family, either. Autism and Asperger's would be polygenetic, that is, involving several genes. Some of these could come from one parent, and the rest from the other.  (People who have common characteristics tend to marry each other - it's called assortative mating.)

        To the extent that a parent might share some of the same characteristics, a good way to think of that is that you (parent), are prepared to understand more of your child's world - possibly more than you might realize.  

        by Kidspeak on Thu Aug 30, 2007 at 10:05:37 AM PDT

        •  I am pretty sure that is the

          situation in our case. My children's father has two close relatives with seizure problems. We are both very similar in that we do not socialize as much (even less as we got older) and enjoy staying home. Both sides of our family also suffer from a wide variety of autoimmune diseases (which is also common in ASD folks) - CFS, Fibromylagia, Overactive thyroid, diabetes, etc.

          by franziskaner on Thu Aug 30, 2007 at 10:20:50 AM PDT

        •  Keep in mind that it is also more

          easy these days for two parents with high functioning autism or Asperger's to meet and have children than perhaps in the past.

          When my son was young, one of his PE teachers was--sincerely--concerned that he was going to turn into a nerd.  I remember biting my lip to keep from gently telling the teacher that if you breed a nerd to a nerd, you're gonna get a nerd (one of the things that made my hubby appeal to me when I first met him was his science fiction collection).

          by joycemocha on Thu Aug 30, 2007 at 06:48:54 PM PDT

          •  And what's bad about being a nerd?

            That PE teacher is sad!  Wow, I think I should have told some of the parents of my students in years past "I'm concerned. Your child is so into sports that he's going to turn into a PE teacher!"

            by Kidspeak on Thu Aug 30, 2007 at 09:37:32 PM PDT

            •  I remember seeing a T-shirt

              that said, "Go ahead and laugh now -- I'll be your boss in 10 years."

              Nerds brought us the Internets -- a jock (well, wannabe jock) brought us the Iraq War.

              'Nuff said.

              by Cali Scribe on Fri Aug 31, 2007 at 04:58:24 AM PDT

    •  I saw a reference to that study--

      wasn't it on AutismVox?

      I am very interested in that sort of study, especially when I keep seeing fleeting references to not just autism but inflammatory bowel disease, asthma and allergies possibly on the same genes as well.

      Could explain some of the issues we see, and why the gluten-free/casein-free diets work for some but not others, and why some people with autism have gut issues but not others--multiple gene locations are what my guess is how it will eventually come out.

      by joycemocha on Thu Aug 30, 2007 at 06:44:36 PM PDT

      •  Yes.

        I think autism is very difficult because I am sure there are a wide variety of causes. We know that less than five percent have a definite genetic cause (e.g. Fragile-X). Btw - Did you know that MIT has recently released a study in which they have eliminated symptoms of Fragile X from mice? Is that cool or what? Anyway, there has been some studies where they find that children diagnosed with PDD-NOS (like my younger son) has a higher frequency of close relatives with autoimmune disorders than even with children that actually have autoimmune disorders. It definitely has to be multiple gene locations. Now, to just find them all.....

        by franziskaner on Thu Aug 30, 2007 at 07:24:50 PM PDT

  •  Middle school is often the hardest

    for any kid. So many children at different points developmentally, and such a big change in academic and social demands.

    If your daughter is anxious, she's likely to get over it (by the way, what you did is just exactly the right thing! As they used to say, when you fall off a horse, you need to get right back on the horse. And you did - you went back.  

    That tells me (I've seen a lot of people with anxiety), that you know good ways to cope with anxiety.  Great!  You should be a very good parent for your daughter - you can empathize, but also encourage her to act even when she is fearful.  

    by Kidspeak on Thu Aug 30, 2007 at 10:09:30 AM PDT

    •  thanks

      and I do, and have, give my two Aspies practical advice on how to cope, as one who's "been there," but also - I can share with them the experiences of not fitting in, and what that's like.

      fortunately, we were all gifted with brilliance, and our "way" also includes a laser-like ability to focus, so we are not so ill-equipped for success.

      by condoleaser on Thu Aug 30, 2007 at 11:25:29 AM PDT

      •  Outcomes are also likely better

        in autism when the IQ runs higher.

        by joycemocha on Thu Aug 30, 2007 at 06:49:50 PM PDT

        •  Sometimes it is difficult to judge

          though. My youngest was non-verbal and in the M/R range of I.Q. Since he has acquired verbal skills through intensive ABA therapy, his I.Q. increased by 16 points in ONE year. He is still no Albert Einstein but I did learn that it is very difficult to judge a person's I.Q. when they are not verbal. I think he was able to make more progress than my other son because he doesn't have as many health issues. We have our own "Temple Grandin" here in Columbus. She is wonderful and was not able to speak until she was in her mid-30's. She now travels all over Ohio (and in other states) and educates many of us parents and other family members with autism. She has given me so much insight into how one with ASD thinks.

          by franziskaner on Thu Aug 30, 2007 at 07:32:58 PM PDT

          •  Intelligence is more than a single number

            Thanks for pointing that out, franziskaner.  There are tests that emphasize nonverbal skills, and receptive verbal skills. Sometimes kids and adults who don't produce verbal responses, can nevertheless be quite savvy about what is heard or read, e.g. spoken by others.

            I'm going to be putting up about testing in a few weeks; thanks for reminding me of some of the more important issues. It is very important to get a view of  strengths that are obscured by that overall IQ score. For your child, and so many others, that single IQ score just isn't a good way to capture intellectual functioning.

            by Kidspeak on Thu Aug 30, 2007 at 09:32:07 PM PDT

            •  Well, you are very

              thoughtful.

              by franziskaner on Fri Aug 31, 2007 at 05:33:16 AM PDT

  •  Autism is hard at times, but knowing

    what it is makes a lot of difference.  When my son was told he was autistic, it gave him a lot of relief because then he could understand why he was different.

    He wasn't diagnosed until he was 16.  Not for lack of effort, though....

    For myself, even though I'm not autistic, I do share elements of autistic behavior from the spectrum (autistic traits, shadow syndrome, whatever you want to call it).  Once I realized/accepted that I also had those elements, I've found social situations that made me tense, anxious and worried before much easier to handle.

    "Okay, it's just an Aspie moment.  I can live with it."

    by joycemocha on Thu Aug 30, 2007 at 06:42:20 PM PDT

•  What a great story! n/t

  by Frankenoid on Thu Aug 30, 2007 at 03:02:38 PM PDT

  •  Isn't it?

    I am so glad you were able to read it.

    by franziskaner on Thu Aug 30, 2007 at 07:25:21 PM PDT

    •  The little bit special group

      is good for more than just scheduling diaries -- also a great way to get a heads up on diaries that we may have missed.

      by Frankenoid on Thu Aug 30, 2007 at 07:30:34 PM PDT

•  A wonderful story.....thank you! n/t

  by Ekaterin on Thu Aug 30, 2007 at 09:28:59 PM PDT

•  great dairy, thanks

  I went to the website for James and made a donation

  Thank you. Your pledge was received and added to this group action. A receipt has been sent to your e-mail account.

  I would encourage any Kossacks visiting this diary to please do the same.
  James sounds like a wonderful young man and it really wouldn't take many of us to  make this necessary help a reality for him.
  Thanks for posting James story.

  by FireCrow on Thu Aug 30, 2007 at 09:42:07 PM PDT

  •  Thank you so much

    for contributing money and a comment. James is getting a real thrill out of seeing the places where people are from and he likes to see the dollar amount rise.

    by franziskaner on Fri Aug 31, 2007 at 05:34:30 AM PDT

•  What a sweet story!

  I was getting weepy by the end. Thank you for sharing this with us! (That pic of James on the pledge page - darn, he's a cutie!)

  A huge thank you to the Rescue Rangers for alerting us to this diary.

  btw, I've pledged $30 to help James get his service dog. I know people who have service dogs, and it makes SUCH a difference in their lives!

  by Lashe on Fri Aug 31, 2007 at 08:28:35 AM PDT