Nicky's Not a Boy, Things Have To Change - My Ah Ha Moment

The way I have coped with much of my grief, is to take one day at a time. I have held on to all hope and not created a future or a picture of Nicky that has not yet arrived. This has been the best approach for me. Not putting limitations on who Nicky will be has been a good thing but it also has a bit of denial woven in it. It has kept me from drawing difficult lines in the sand that acknowledge that we have to work toward the best, and we must prepare for the worst. A really counter intuitive thing for a mom. The worst is that Nicky will not recover from autism, and that my job is not to cure him but to help him manage it the best he can. That's been a hard journey for me. But reality has a way of always bringing life into perspective.

As I sat in a restaurant last week with Nicky and his therapist I watched another family in the booth across from us. In our booth was a 10 year old with autism, still young and cute making it possible for people to disregard his behavior. In the booth across from us was an 18 year old with autism, who displayed many of the same behaviors as Nicky. The behaviors don't look the same when they are on a young man and not a boy and that was a reality check for me. I've heard it before from his therapist and I've even said it, but at that moment the reminder hit like a ton of bricks. The borderline period is almost over. He won't be a boy much longer you have to help him before he get's too big. Nicky has to be able to always eat with utensils, he can't grab me, he can't continue to lift my shirt and push his ears on my stomach. He has to be able to greet people and use words to ask for what he wants, I can't say "Go Potty", I can't say "Nite Nite", I can't let him come and sleep in my bed at night, I can't let him pinch me instead of saying hello, I can't let him hit or pinch anyone he has to learn how to control himself and he has to learn to use the words he has been blessed with. We owe it to him to do the best we can to help him find replacement behaviors.

As much as I love how great he is doing with his school work (in part because it's the one place when he's like other kids) the truth is he still can't have a social conversation with his peers. So, the heck with school work, I don't care how much information he can memorize if he can't make any friends, or go into a restaurant and order food, or find his way to a bus, or make a phone call, or get help if there is an emergency.

So I went back to his team and his incredible sister and ranted about how we have to do better(we is really me) we can't afford to let a single teaching day slip by. I need them to stay on top of me, don't let me make any excuses for me or for Nicky. I need them to help me be strong. It's time for me to let go the short term worries of protecting him in exchange for the long term pain of having contributed to his restricted independence.

Suddenly the only thing that seems to matter today is how to make sure that Nicky has the skills to live in the world, because that's what he deserves from me. That is the legacy I can leave for him and Evyn when the day comes that I can't be here.

NIH To Use $60 Million In Recovery Act Funds To Support Strategic Autism Research

It's depressing to listen to the news where I am bombarded by newscasters talking about all that is wrong in the world. So to protect my pysche, I've turned off the TV and I've been using the internet to find news. Found this government press release today and I was really happy to know that is these economic times, Obama is living up to his promise to keep our kids on his agenda. I was also pleased to read that this funding is designed to help infants, toddlers, teens and adults living with ASD. We need all the help we can get.

NIH To Use $60 Million In Recovery Act Funds
To Support Strategic Autism Research

The National Institutes of Health will commit roughly $60 million from the American Recovery and Reinvestment Act (ARRA) to support autism research and meet objectives set forth earlier this year by a federal advisory committee. The Request for Applications is the largest funding opportunity for research on autism spectrum disorders (ASD) to date and, combined with other ARRA initiatives, represents a surge in NIH's commitment to finding the causes and treatments for autism.
Four grant announcements, sharing a single title, "Research to Address the Heterogeneity in Autism Spectrum Disorders," will use different funding mechanisms to support a range of research topics over the next two years. Examples of research topics include developing and testing diagnostic screening tools for different populations; assessing risk from prenatal or early life exposures; initiating clinical trials to test early interventions; or adapting existing, effective pediatric treatments for older children, teens, and adults with ASD. For a full listing of possible study topics, see the grant announcement listing in the NIH Guide grants1.nih.gov/grants/guide/index.html. While few trials can be completed in two years, ARRA funds will be important for jumpstarting projects and building the infrastructure or foundation for longer-term autism research efforts.
These topics correspond directly to short-term research objectives detailed in the Interagency Autism Coordinating Committee's (IACC's) Strategic Plan for Autism Spectrum Disorder Research is.gd/oNSf , released earlier this month (read next item). Comprising representatives of federal agencies and members of the public, the IACC coordinates efforts within the U.S. Department of Health and Human Services concerning ASD. The group's strategic plan, created with the input of the scientific community, service providers, advocates, parents, and people with ASD, is organized around six critical questions asked by people and families living with ASD:
• When should I be concerned?
• How can I understand what is happening?
• What caused this to happen and can this be prevented?
• Which treatments and interventions will help?
• Where can I turn for services? -- What does the future hold?
Targeting Recovery Act funds toward objectives identified in the IACC strategic plan will help move the science forward sooner than anticipated in addressing some of the most significant challenges to understanding and treating ASD.
As part of the ARRA, these autism grants will promote economic recovery by creating and maintaining biomedical jobs, as well as supporting innovative projects to serve as platforms for future, longer-term research efforts. Beyond those who will receive direct funding for their work, these new grants will also benefit allied health workers, technicians, students, and other groups affiliated with the scientific research community. All grants funded by the ARRA and their outcomes will be posted on a new Web site, , providing transparency and accountability.
"The Recovery Act comes at an opportune time for autism research," said Thomas R. Insel, M.D., NIMH director and IACC chair. "As reflected in the IACC strategic plan, we have a growing sense of urgency to help the increasing number of children being diagnosed with ASD. With the arrival of new funds, we can immediately start on many of the short-term objectives in the plan and use Recovery Act funds to support science that will facilitate the best possible outcomes for people with ASD and their families."
As with all Recovery Act funds, NIH is required to obligate the $60 million within two years. Answering this mandate will entail a highly streamlined process for reviewing grant applications and allocating funds by Sept. 30, 2010. The National Institute of Mental Health (NIMH), part of NIH, will lead this effort, with participation from the Eunice Kennedy Shriver National Institute on Child Health and Human Development (NICHD), the National Institute on Deafness and Other Communication Disorders (NIDCD), the National Institute of Environmental Health Sciences (NIEHS), and the National Institute on Neurological Disorders and Stroke (NINDS).
Researchers funded through these new autism grants will be expected to contribute to the National Database for Autism Research (NDAR). NDAR was established to serve the autism research community as a common platform for exchanging data, tools, and research-related information, as well as to serve as a portal to and for the broad autism research community. For more information about NDAR or data sharing policies, please refer to the funding opportunity announcements or see ndar.nih.gov.
In addition to the NIMH-led effort, NIH will allocate another portion of its ARRA funds for autism research and related programs through the NIH Challenge Grants in Health and Science initiative and other potential programs. These grants will be announced in the coming weeks.

One Child In 60 in UK Suffers from a Form of Autism

The saga continues. Hopefully the next chapter will include some real answers.

One Child In 60 in UK
'Suffers From A Form Of Autism'

By Sue Reid for the dailymail.co.uk. is.gd/oqMq

Far more children have autism than previously thought, a study of British school pupils has found.
Researchers now believe as many as one in 60 children has some form of the condition.
The disturbing findings, which are due to be made public within weeks, mean that up to 216,000 children in the UK could suffer from an autistic condition, although many have not yet been diagnosed.
The research could have a major impact on public services in Britain with many more youngsters potentially needing a lifetime of special care.
Families caring for severely autistic children say their lives are devastated by the condition, and looking after sufferers of autism and related disorders already costs the nation £28billion a year.
The latest study, by academics at Cambridge University's respected Autism Research Centre, involved thousands of children.
Controversially, it showed autism rates were nearly twice as high as the figure of one child in 100 which is currently accepted by the National Autistic Society.
It also surpassed the one in 87 figure revealed by research among south London pupils three years ago, which was published in the Lancet medical journal.
Cases of autism have significantly increased over the past 40 years.
In the 1980s, for example, a study found only four in every 10,000 showed signs of childhood autism.
The Cambridge study, led by Professor Simon Baron-Cohen, states clearly that the apparently higher rate found recently is down to better detection and diagnosis.
The outline results of the professor's research have already been revealed at a major international conference of world experts on autism, although they have not yet been formally published.
The audience in London was told that autism spectrum conditions have shown a 'steady increase' over four decades.
The researchers conclude that a figure of one in 60 gives an accurate picture.
They estimate that one per cent of children - one in 100 - are known to have an autistic condition.
But, significantly, they say that for every three known cases, there are two unknown. This equates to five cases in every 300 children - or one in 60.
'This has implications for planning, diagnostic, social and health services,' the researchers told the conference.
Benet Middleton, of the National Autistic Society, yesterday welcomed the study's findings, saying: 'It is very likely there are people affected by this complex condition who have been completely overlooked by education and health officials and remain undiagnosed.' The Mail understands that two possible lower rates of autism among children - around one in 74 and around one in 94 - are also cited in the study.
These were estimates made by statisticians to compensate for missing data - for instance, when parents failed to return survey forms.
Even these lower rates, which were not mentioned in the study's conclusion, would still have a significant impact on schools, social services, and the NHS.
Anti-vaccine campaigners have previously claimed a link between autism and the MMR triple jab given to children aged between 12 and 15 months.
However, the Department of Health has dismissed the idea and Professor Baron-Cohen said: ' Environmental factors such as chemicals and children's exposure to testosterone in the womb are a more likely cause.
'At this point, one can conclude the evidence does not support the idea that MMR causes autism.' Yesterday he declined to comment on the new findings, which will be published in the British Journal of Psychiatry.
Dr Richard Halvorsen of Baby-Jabs, a private vaccination clinic in London, told the Mail this week: 'The Cambridge figures are very concerning.' In the U.S., President Barack Obama has just launched a multimillion dollar offensive to combat autism and find its causes.

Teaching Choices and Learning about Preferences

Fun Food Activity for Parents

I patched together ideas from Nicky speech therapist and behaviorist to come us with this game because my Nicky has such a difficult time expanding his interest. Introducing anything is rough, including FOOD. I used this game to expand his food choices, help him get used to making independent choice and to give me a change to learn his preferences. This is a yummy way to build choices, independence and confidence. Because it's visual all kids can do it and I learned a few surprises about Nicky's preferences.


Hint: Begin by creating your own list with some of the things you know your child enjoys.


Step One: Set up a story. Joe is going to a friend’s house to visit. His friend wants to make sure his visit will be special. He asked Joe some questions so he could know things Joe liked best. Step Two: Ask the question and have the child circle the one they like better. Example Fish or Chicken…which do you like better?



Bacon or Sausage

Eggs or Hash browns

Pancakes or Waffles

Lemonade or Orange Juice

Apple Juice or Milk

Pizza or Hot Dogs

Taco or Hamburger

Chips or Popcorn

Ice Cream or Yogurt

Cake or Cookies

Chicken or Fish

Pasta or Rice

Raisins or Nuts

Grapes or Strawberries

Apples or Oranges

Turkey Wrap or Peanut Butter and Jelly



Step Three: Once your child gets used to choosing you can put a favorites list on the Fridge and let him choose from there!



Build Your Own Games: You can vary the game with anything like "Drawing or Painting", "Sleeping on the Top or Bottom Bunk", "Riding Bikes or Skateboards", "Going Hiking or to the Beach" and on and on. Have Fun!

"Local Mom Uses Autistic Son to Run off Paparazzi".

Last week Nicky’s school bus could not drop him in front of the house because a band of paparazzi were parked in front, stalking my new neighbor. I don’t like them there, they drive fast, they fill up our quiet street, they just sit for hours in their cars (working on lap tops) and leave their coffee cups in the street. It’s creepy and dangerous.

Once Nicky figures out that people on the street have his favorite thing, computers, in their cars...he will be stalking them! Not Good.

So, I went out and nicely asked them to leave; they were not impressed. They just kind of shrugged and didn’t really acknowledge my request. So I opted for a more direct approach and I took Nicky outside to introduce him personally to the paparazzi. I calmly explained that I know we all have to make a living, but my kid doesn’t understand how to watch out for traffic, and he has no idea who you are. He could run out the front door and we would have a tragedy. It would be horrific if their speeding cars hit kid the ASD kiddo. So you frighten me parking right in front of my house, could you please park somewhere else and tell your friends about Nicky.

I'll be darned, they left. I can read the headlines now "Local Mom Uses Autistic Son to Run off Paparazzi".

Oh, never a dull moment!

Music and our Kids

Nicky has always loved music, even though he did not express his interest the way other kids did. One of the things that kids with ASD often can't do is imitation and singing nursery rhymes and kids songs is really nothing more than imitation in the early years, so Nicky could not follow along. Instead he would jump up and down make noises and flap his hands. He couldn't sing a song until he was 7 and he still can't organize his body well enough to dance in a group(another form of imitation). Now he likes to sing and when he finds a song (usually a theme to a TV show he has heard hundreds of times) he enjoying singing along with the TV. He likes to dance and his favorite place to do this is the movie theatre. At the end of a movie he turns to me and say's "Mommy Dance", we stand and we do a kinda rock back and forth dance move until the end credits are finished. This is pure joy for little man. I've always known that he loves the piano, even though he refuses to sit still for lessons. Instead I will find him on the piano, by himself playing on the keys, creating sounds that really blend together beautifully. Sometimes he sits and plays for up to 10 minutes, just focused and listening.

When I think about the music that Nicky is attracted to, they each have a very specific emotional connection, all connecting him to the feelings he has around his experience where he heard the music. The songs he likes from Video's are usually very exciting and full of fun reminding him how much he likes the video. The music he likes to dance to at the end of a movie usually calm and happy and let's him re create his feelings from watching the movie. The piano music he creates tends to be calm and I think he is experimenting with sounds that he can use to sooth himself. That said, I read this article this week about music and the brain and thought I should share. It also reminded me to keep looking for a music teacher for Nicky. Not alot of music teachers reaching out to teach ASD kids piano in my area :(. I've tried.

Want to Rewire Your Brain? Study Music
All Those Hours at the Piano Paid Off: A Musician's Brain Recognizes Sound That Carries Emotion

By Lee Dye at abcnews.go.com. is.gd/mX3z

All those hours practicing the piano pay off big time by biologically enhancing a person's ability to quickly recognize and mentally process sounds that carry emotion, according to a new study.
The study, from Northwestern University in Evanston, Ill., offers a new line of evidence that the brain we end up with is not necessarily the same brain we started out with.
"We are measuring what the nervous system has become, based on an individual's experience with sound," Nina Kraus, director of the university's groundbreaking Auditory Neuroscience Laboratory, said in a telephone interview.
Kraus and a team of researchers attached electrodes to the heads of 30 people, half of whom were serious musicians and half of whom had no significant musical training. The electrodes measure electricity, "which is, of course, the currency of the nervous system," Kraus said. The study revealed two major differences between the musicians and the nonmusicians.
Musicians heard an emotion-packed, complex sound with an enhanced sensitivity, and they also were less distracted by simple sounds, according to the study, published in the current issue of the European Journal of Neuroscience.
"What we found in this study is both an enhancement and an economy of resources varies as a function of the extent of musical experience," Kraus said. "The more years the person has been playing an instrument, and the earlier the person began musical training, the larger the effect."
Although many other studies have tried to show the beneficial effects of musical training, the researchers said their findings "provide the first biological evidence for behavioral observations indicating that musical training enhances the perception of vocally expressed emotion." The findings have implications far beyond the world of music.
"The same neural transcription process that is enhanced in musicians is found to be deficient in some children with language disorders such as dyslexia and autism," Kraus noted.
The research suggests that something as basic as musical training may be a useful therapeutic device, along with other more traditional techniques.
Emotional ID "Quickly and accurately identifying emotion in sound is a skill that translates across all arenas, whether in the predator-infested jungle or in the classroom, boardroom or bedroom," said Dana Strait, a doctoral candidate in the music department and lead author of the study.
The researchers relied on an emotion-packed sound that has been used for many years by scientists around the world who have studied auditory processes -- the sound of an infant crying. That sound carries an enormous emotional load, but it is also a surprisingly complex sound.
Sound waves measured during the experiment show periods of relatively mild emotional content in the sounds from the baby -- almost a straight line on a chart -- punctuated with brief bursts of complex sounds that vary in intensity, frequency and strength.
The participants, wearing earphones, sat in front of a monitor showing nature films with subtitles. Every now and then, they heard the sound of a baby crying through the earphones. The electrodes measured the stimulus -- the baby crying -- and the response of each participant.
As expected, the musicians had an enhanced ability to pick up on the emotional cues of the sound. But the researchers were a little surprised to learn that the musicians were more attuned to the complex sounds -- those carrying the most emotion -- than to the less significant "periodic" sounds of crying. That allowed them to devote more resources to the important sounds and virtually ignore the sounds that carried little emotion.
+ Read more: is.gd/mX3z

The Facebook Theory of Autism...What Next!

The Facebook Theory of Autism has arrived. Autism is caused by the brain being rewired by social networking sites such as Facebook and Twitter? Lord have mercy! Let's see, my son was diagnosed at age 2...before either of these nifty technologies were on the scene, I just started Tweeting and...well no signs of autism...at least not yet. I guess the good news is that everybody wants to come to our Autism party with their theories. Hey the more scientific experiments the better! Below is new info out of OXFORD...yes OXFORD. Read it yourself.


In the latest health scare regarding the internet, scientists at Oxford University have warned that children who spend too much time on social networks online could suffer from personality and brain disorders.
Susan Greenfield, a neurologist at Oxford University has claimed that social network sites such as Facebook, MySpace and Twitter can physically “rewire” children’s brains to change their personality.
Ms Greenfield said that too much time spent online would cause children to become more selfish and would severely reduce their attention spans.
In an interview with the Daily Mail, Ms Greenfield said: “My fear is that these technologies are infantilising the brain into the state of small children who are attracted by buzzing noises and bright lights, who have a small attention span and who live for the moment."
Ms Greenfield went on to suggest that the recent rise in child autism could be a direct result of children spending too much time online on popular social networks such as Bebo.
As if it weren’t bad enough that time spent in front of the computer has been demonised and held responsible for increases in violent crime, the corruption of youth and the dissolution of the English language, now it is being promoted as a cause of autism.
One of the key problems with Ms Greenfield's line of reasoning is that it isn’t actually backed up with any form of scientific evidence.
Ms Greenfield's opinions are based purely on hypothesis and have yet to be tested by any research.
Social networks are the new fad, and as the likes of Bebo and Facebook grow in dominance, so too do their critics become more extreme.
The last wave of hysteria was over the corrupting influence videogames held over children, inciting violence.
The latest research has actually shown videogames to be beneficial to children, developing better cognitive capacity, problem solving skills, spatial awareness and coordination.
Far from damaging children, social networks help with cohesive social integration; and without some substantive scientific research, the suggestion of autistic repercussions from spending time on social networks, is questionable at best, ludicrous otherwise.

The Dummies Guide to Winning for Your Child in IEP Meetings

It's IEP season and I just got an Email  from a mom whose son is about to transition from preschool to elementary and she'd appreciate any  input to avoid the inevitable conflict and tug of war she was expecting. 

My best advice is:

• Be prepared. Take nothing for granted. Know what you want for you child and be ready to explain why. Explanations that do not work include; Because, Other kids have it, I heard it works, I think it's a good option won't cut it. Even when it's true it's not a good argument. 

• Bring your own data. If you have access to outside evaluations and reports before your IEP, get them and bring them with you. If outside evaluations are not an option for you, make a journal and keep a record of what's happening with your child (day by day and even hour by hour if necessary to show patterns) at home, in the community, at school, in therapies. Use your journal to draw a clear picture of what's going on with your child. Showing your detailed knowledge of what's working and what is not establishes you as a serious parent and advocate and it can make all the difference. 

• Bring Support; Find out how many people are going to be in the IEP meeting and take an advocate, friends or family to try and have an equal number of folks on each side of the bargaining table. It just seems to bring balance and reduce the vulnerability of being outnumbered. 

• Learn your legal rights. Treat the IEP like a negotiation. I have some materials on legal rights and the IEP on this blog and I recommend visiting http://www.ncld.org/parents-child-disabilities/ld-rights and http://www.specialeducationadvisor.com/top-ten-parental-rights-in-special-education/

• Stay calm, but make no assumptions that everyone will have the same plan for you child. 

• Visit the school first, see the programs, meet the staff. Your school setting is going to one of the most important settings in your child’s life, you want to build relationships so people will work with you. If you want to be in that school remember it's okay to be firm and fight a good fight, but remember that you're gonna be around these people for years. Think ahead to what you want that relationship to feel like after the IEP, and for the next one.

• Know Your Options. If the IEP is a total failure or just not what you want to sign off on, don't  sign it. You don't have to sign the IEP if you don't agree with ALL of it. You also have the legal right to challenge it and go to the next level. 

• It can't all happen at school. In truth there are some things that can't happen at the school level. Some decisions have to be kicked upstairs, it's not a ruse.

• People First: I always remind myself that teachers are so valuable, and they are not paid enough for what they do. So they must be there because, even if I can't see it, they care they want to help". This helps me to stay calm. I know that making an enemy out of the school team no matter how much we may differ, won't help Nicky.

Then she asked what my first IEP's were like. I was honest…for me those early years were awful and I am so glad they are behind me. The years when we just know so little about ourselves, our children and the systems that are supposed to support us. The years where we are grieving and desperate to help our children, often armed with little more than passion are rough. I'm not sure if the early IEP's were rough because of other people, or if they would have had a different outcome if I had been more knowledgeable  Who know's, but I do know that I have had a few bad and many good IEP's. However it was the bad IEP's that taught me the most, and it is those lessons that I cherish.

Moving on she wanted to understand the challenge so I told her that after Nicky was diagnosed parents began to tell me that the IEP (Individual Education Plan) meetings were nightmares. I was nervous before I ever had one scheduled. An IEP is an annual meeting where parents are invited to join a group of teachers, administrators, therapist to decide everything from what classroom your child should be in, to what services he would get, to educational goals.

I was told over and over that if you were not prepared, your child would suffer because schools didn't just hand out services because the kids needed them, you had to prove you needed them. One mom even had a three inch IEP binder full of every report, evaluation, every doctor visit. She kept detailed notes about his development all neatly organized by therapy and dates. She told me that armed with her binder, and the knowledge that other parents told her "take nothing for granted" and "get an advocate" her IEP for her 5 year old had ended well. She had got the services she believed he needed and she was certain that her preparation was the key to her success.

Being the good warrior I started my binder and my first IEP was a success. Nerve racking but successful. Then came a transition IEP where I wanted him moved to a new school with a program that I felt was better suited to him. It was during this IEP meeting that I learned how bad an IEP could be, for me. The meeting lasted 7 hours, I developed a fear of IEP's that lasted for years. I remember trying to be calm as people debated what was best for Nicky. I even remember that the conversation went so far as to cast blame on Nicky and I instead of staying focused on how to help him...AMAZING. It was so stressful I was physically sick to my stomach before we finished. For hours we debated over which services he would get and why he needed a new program. Fortunately I had spent weeks collecting documents to prove what he needed I had documents what had happened. I knew the burden of proof was on me. I proved that his language skills has regressed in his current setting, I proved that he was not being properly supervised, I proved that the teacher gave him food that made him sick. I showed why if he didn't have an aid he would be a health and safety risk (Nicky was a darter), I proved that he couldn't get access to FAPE (Fair and Appropriate Public Education) with out one on one support. I even came prepared to prove that my kid who has greatly impaired speech and sensory integration challenges needed speech and OT.

They still denied his services and placement. I had to move on to legal mediation. In mediation I presented my information, and I got everything I asked for and everything Nicky needed.

After years of IEP’s - many of which have been incredible successful - I am finally past my over the top sick to my stomach type nervousness. All the same I don't think any family should go to an IEP unprepared. I know I will never go into an IEP unprepared.

Guilt Sucks - Feeling like I didn't Do Enough

I wrote this in September and I didn’t post it. Even though the date is old, the challenge and feelings are as relevant today as they were the day I wrote it, so here goes.

I went on a long weekend get away with my family. When we got back one of the group let it slip that she was surprised to see how bad Evyn and Nicky's diets were and I lost it. I was so angry. Had she been on the same trip I was on? Didn't she see Nicky's 30 minute tantrums, him jumping up and down all night, the difficulty I was having getting him to be okay for even a short period of time in an unfamiliar place. Didn't she see my daughter, frustrated that her brother needed so much attention and couldn't she tell how hard I was trying to find ways to help everyone relax when Nicky required constant attention. Guess NOT, I told myself!

I thought I had done a good job. I had packed the foods I knew he would eat, enough for 4 days. Yes the foods he will eat, are not all good, I knew that, and I didn’t like being reminded. Didn't she understand that I made a choice. A choice between a totally miserable kid who when deprived of the familiar would become a behavioral nightmare and ruin the outing for all. Didn't she see that I had tried to make the trip as nice as possible for everyone, that I knew the idea of trying restaurants in a foreign country that might have nothing to offer, or worst yet offer food that further disturbs his messed us gastrointestinal system would just make everyone miserable?

Couldn't she see how hard it was to try to keep any balance. Couldn't she see how Nicky was already bouncing off the walls because he was in a different place.

My temper flared and I told her she was out of line, the trip wasn't a reflection of their total diet and it was unfair to judge me.

I told her I was offended and hurt that given all she knew, she didn't understand. It seemed that she didn't get that my priority was to keep him as calm as possible so I controlled what I could. Translation, no eating out, packing all the food the kids would need for the weekend. I packed chicken nuggets, turkey bacon, popcorn and hash browns for Nicky, and pre packaged dumplings, tamales and snacks for Evyn and I.

That said, I knew she didn't mean any harm. Maybe she could have said it better, but her remarks were really not the cause of my anger. She loves me and she loves the kids. she was making an observation and had I listened maybe even trying to help. I was angry because my guilt was almost too much to bear. Had I chosen a calm trip over Nicky's well being? Ouch. The question hurt. For all I do, I always feel like I have not done enough, which leaves me feeling guilty. I lashed out at my sister because of my guilt. Because in that moment when she confronted me I wondered if I had made the right decision, or if I had been selfish all along, and I was angry with myself for not getting it "right".

When I calmed down, I realized that I was being way too hard on myself and my sister. I reminded myself to be kind to me and to forgive me when I'm not perfect. Then I was calm and I wasn't so mad at her either.

Not a Good Day For Nicky

He's sad and just wants to be held. I have no idea what is wrong and it's one of those times I feel incredible sadness and fear that he cannot tell me. I'm going to hold him. He is doing better all the time I pray that one day, he will just be able to say "Mom I feel sick, my body hurts".

The California State Budget - DDS Community Stakeholders Meeting in Los Angeles

This week I went to the meeting DDS had to share with stakeholders their plans for "cost containment" and get input. Cost Containment a fancy word for budget cuts! In this case the state wants to cut vendor rates and program rates by 10.1 and then freeze these rates PERMANENTLY. If they are not challenged to find a better solution to reduce costs it will mean the end of our entitlement program in California, as it was written in the Lanterman Act. The budget is a disaster and it was clear the plan state government is set to implement is reactionary, reckless, poorly planned and as it stands now it is sure to harm those that they are charged with protecting.

One after another people with disabilities, representatives of companies who provide services to this community, moms and family members came to the microphone to be heard by the head of the Department of Developmental Disabilities. Each telling stories of the impact cutting 10% of an already strained budget will do to the care of people who cannot care for themselves. Each pleading with the state to look for ways to cut the budget, other than asking the already fatigued families and the vendors to shoulder the cuts. People asked that they please look at the entire system, look for waste closer to the top, look for strategies to improve the system and make it better for the future. One man called our state capitol, "Cirque du Sacramento" where budgets are illusions legislators twist at will with no concern for good business or long term success. He implored them to stop the business as usual that got them here, instead insisted they use some basic business practices as part of their decision making process.

As I looked at the people representing the state who sat on the Dias - each taking copious notes in part to avoid eye contact - I wondered what do people think will happen if we don't care for people who can't care for themselves? What's the consequence if we don't help the children reach their potential and become contributors to society? What will happen to all of us when instead of getting help vulnerable people with developmental disabilities land in jail instead of group homes? What will happen when our homeless population soars with abandoned people with disabilities? What will happen when people with disabilities are abused or institutionalized because we didn't protect them? Who are we?

Gene Could Link Autism, Digestive Problems

I've shared in the past that Nicky has had tummy problems since birth. Initially it was so bad, and he was in such pain that he ended up with a herniated belly button from the constant crying. I swear he never stopped crying as a baby. He could not keep down breast milk or formula it was a nightmare. Around two he started to suffer from diarrhea, and for TWO years and NO ONE could tell us why. It was a scary time and to this day he still has gastro challenges. He still can't verbalize that his tummy is hurting so we have to watch him ever so closely for stool changes and bloated tummy. I've always believed there is a brain gut connection and like thousands of others am just doing the best we can until science or someone gives us an answer that works. Today I found this article and I thought it was well worth the read. Also, I'm working with an organization called What's in Your Lunch Box that is working to help us feed our kids and deal with their many many gastro challengers. Here's what I just found.

RESEARCH

Gene Could Link Autism, Digestive Problems

By Liz Szabo, USA Today. is.gd/lBoo

Researchers are studying a gene that may cause both autism and gastrointestinal disorders, a study in Monday's Pediatrics reports.
More than 30% of people with autism also have some kind of stomach or intestinal problem, compared with fewer than 10% of people who aren't autistic, says study author Daniel Campbell, research assistant professor at Vanderbilt University.
Campbell is focusing on a gene called MET, which is involved in brain development before birth and in connections between brain cells after birth, as well as in the process through which the gastrointestinal system repairs itself. In his study, a variation in this gene was associated with both autism and gastrointestinal problems in 118 of 214 families. But researchers found no link to the genetic variation in autistic patients who didn't have gastrointestinal problems.
That suggests the genetic variation may be responsible for causing autism in this specific group of people, although it may not be related to other cases of autism, Campbell says.
As scientists learn more about the disease, Campbell says, it appears that autism is not a single disease but a spectrum of disorders with common symptoms but different causes.
Campbell's research was financed by the National Institutes of Health, a private group called Cure Autism Now and other sources.
Some researchers say Campbell's findings, although intriguing, are preliminary.
Hakon Hakonarson, an autism researcher and director of Children's Hospital of Philadelphia's Center for Applied Genomics, says it would be surprising for one gene to be responsible for the wide variety of problems included in the study: chronic constipation, chronic diarrhea, reflux, irritable bowel syndrome and ulcers.
Researchers need to try to replicate their findings in a different group of people to prove that the results were not just the result of chance, says Hakonarson, who was not involved in the study.
Campbell says he's working on a more definitive study. In his current paper, he relied on parents to describe their children's gastrointestinal difficulties. In his new project, children will be seen by a gastroenterologist, who will be able to confirm the gastrointestinal problems.