Disney World 2016 – Wish Us Luck!

disney2We decided to take a chance and finally take Christian to Disney World in June of 2015.  I was anxious about the entire trip, how he would react in the airport, changing planes, using public bathrooms, lots of people, etc.  Christian was 14 at the time and we thought if we don’t take him now, if we keep waiting for him to be “more manageable” well never do it.  So, we decided to sit down and plan out the best way for Christian to travel there and what our back-up plans would be for any meltdown he may have.  We decided to fork out the money and fly first class on Delta and stay inside Disney at the Grand Floridian.  It was very expensive, but well worth the money.  It made things so less stressful, for the plane we were always the first ones on and the first ones off.  Staying at the Grand Floridian was great because we could just hop on the tram or the boat to Magic Kingdom instead of waiting endlessly for a bus that was not full by the time it got to our hotel.

disney8 Amazingly, Christian had NO meltdowns whatsoever on the plane, in the airport or at Disney.  He loved being in the plane, I thought for sure he would not like it and would want to keep getting out of his seat – he loved sitting by the window and got excited during take off.  My anxiety was so high, I know my blood pressure was sky rocketing that whole trip.  I kept waiting for a meltdown, it never happened.

So, we are leaving for Disney again tomorrow and am praying that it goes just as smoothly as it did last year.  Unfortunately, this year he got the flu one week before our trip, today he is better, but still coughing, still hoping for the best. Praying for no meltdowns, no fevers, and no seizures.  Last year, my severely autistic child, whom years ago could not even handle being in a store, nor stand in any type of line, was more well behaved than “non-autistic” kids at the park last year.  Christian completely surprised us, he stood in line so calmly and waited his turn, while other kids, whose parents either weren’t paying attention or didn’t care, were running around and cutting in line in front of others.

I was also anxious about Disney offering enough Gluten-free options for his diet.  No worries, Grand Floridian cafe has gluten-free meals and before every meal the chef would come to our table to discuss Christian’s dietary restrictions.  Disney is wonderful when it comes to making sure every child can have a great Disney experience.  Hoping we have another great trip.  I was so grateful every night, every hour I kept thanking God for allowing us to finally have a “normal Disney World trip” like all the other families.  This is something we never thought possible.  Will post a blog when we get back – Wish us luck!

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April Fool’s Day prank ends with New Oxford student stuck to toilet

April Fool’s Day prank ends with New Oxford student stuck to toilet

Please read this article.  This is the passive attitude when something happens to a special-needs child.  Is this really funny?  Am I overreacting as usual?  How would you feel if your child was super-glued to toilet and later needed hospitalization?  That is what I am being told.

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RAVE: About It All – Jobs for Special-Needs Adults

aboutitallI just read an inspiring and incredible article in the Hanover Evening Sun about Tony Myers, “Owner Hopes To Help Special-Needs Adults” and his store”About It All“, a custom apparel shop located at 16 1/2 Baltimore Street in Hanover.  What I love about his vision of his store, besides creating job opportunities for special-needs adults, is the vision of creating a “special-needs friendly environment”.  A place where special-needs adults are not being hired to meet a “quota” and treated like they have a disease.  His environment would welcome all special-needs adults, who can be themselves and understand that they are worth hiring, not because they are special-needs, but because they are worth it and have something to offer.

As a mother of a child with autism, who still cannot read or write, I often worry about what is going to happen to my son when I pass on.  Who will take care of him?  The solution to this is for my husband and I to try and get him the best education possible and that teaches him necessary life skills which include job-skill training; learning what a job is, why it is important to have one, how to use the money appropriately to pay bills and to take care of himself in general.  Establishments such as About It All are a blessing and a “sigh” of relief for parents such as myself (even though my son only turns 14 in September).  Like other parents, we too our concerned about the quality of our son’s future and hope that he can learn to live independently some day.

However, in order for this business to succeed, like any business, Tony Myers needs business.  Please consider ordering apparel from About It All and help spread the message about this wonderful employment opportunity for special-needs adults.  I had the opportunity to speak to Tony on the phone and I was so impressed with his passion to provide a place of employment where special-needs adults can feel respected and dignified. I still feel like I can’t fully express my gratitude and appreciation for Tony’s vision and hard work for creating About It All.

The article in the evening sun listed his email address incorrectly.  To get a hold of Tony Myers, his email is tony@aboutitallpa.com or you may call him at 717-965-1739.  Their website, aboutitallpa.com, is still under construction but should be up soon.  On Facebook you can look him up by searching, Robert Tony Myers Sr.  His page has photos of shirts his company has produced.

If you are a local business, please consider supporting this wonderful establishment.


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Summer 2014 – New Adventures and Lessons Learned

I have to say, overall this has been one of Christian’s best summers.  We still have those “bad times”, but they are not a bad as they used to be, do not last as long and aren’t as frequent.   Still, summer is a bit of challenge at this time, because there is no ESY (Extended Summer School Year – summer school) or camp days.  (Christian doesn’t start school until August 25th)

xtianfacepaintingChristian attended Easter Seals Camp – York County Day Camp for two weeks in West York, one week before and one week after summer school.  He loved going there and the counselors there said he did a great job. He actually got his face painted with a rainbow, sang with the other kids, went for walks and played kickball.  I was really surprised about the face-painting; I still can’t believe he sat still for that.  Usually, he does not like anyone to touch his face or hair.

Another new adventure for him was to ride a mechanical bull at a local fair my parents took him to.  Apparently, he went right towards it and asked to get on.  Luckily, the operator had it operate at the slowest speed, he stayed on it and seemed to enjoy it!  As a parent, I assume that I know what Christian will try and not try, this summer I learned that I was wrong and that he really surprised all of us with his new pursuits.

Watch this clip to see Christian riding the mechanical bull.


He also attended equestrian therapy and finally got on the horse.  The first time he was there he couldn’t get on the horse, he didn’t understand how to swing his leg over and sit on the horse.  So the staff there created a hay pile for him and put the horse saddle on it, he immediately sat on the saddle.  After doing this a couple of times, then he was able to mount the horse.  He first rode the horse for only 10 seconds and then a little longer the second time, the third time he was on the horse for almost an hour!  Again, he surprised us all!

Watch the clip below to see Christian riding the horse!


vacaypicWe also went on our first vacation in about seven years, we went to Great Wolf Lodge in Scotrun, PA.  It has an indoor water park, outdoor pool and the hotel is completely catered to families.  It was a beautiful, large hotel, but the lobby and the indoor water park were a bit too noisy for Christian.  The first day of our trip was wonderful, Christian loved the wave pool and he did great during the entire 2 hour and 45 min ride there.  The second day, not so great, he couldn’t take the loudness and just wanted to be in the hotel room all that day.  I had to go get dinner for Bill and I, since we couldn’t leave our room and as I was standing in line, I was watching the many families passing by going to and from the indoor water park.  I remember feeling extremely depressed since I wanted to have more time with Christian in the pool and having a good time.

Later that day, I learned of Robin Williams suicide and was completely sadden as were many people by his unexpected death.  His death made me realize that I shouldn’t have focused on the fact that Christian didn’t want to leave his room on the second day, but I should have focused on the fact that the first day was a great day.  We actually had a “normal” family vacation experience, even if it was just for one day.

I think Robin Williams’ death made us all realize that nobody is perfect, we all have our “issues” and that we all try to put on a “happy face” when things really aren’t that “happy” for us.  We do this, because as I have learned, when you take off the mask and show people what your situation is really like, or how you really feel, you can open yourself up to receiving harsh and insensitive criticism.  This obviously is something I have become very accustomed to, but that’s okay.  It’s worth it to me because of the people I have met, become friends with, and found support with by expressing my truths about my experiences here on this blog and on Facebook.

Summer 2014 was a very good summer for us overall, there were some bad days, but, finally, the good days actually outnumbered the bad days for us.  Hoping the rest of your summer goes well.

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RAVE: Autism Symposium – Discussing Issues Needing to be Discussed

On Friday, April 25 I spoke at the Autism Symposium at Gettysburg Hospital.  This event is sponsored by the Healthy Adams County Behavioral Health Task Force and the focus of the symposium is to provide information about autism services and resources that are available for individuals on the autism spectrum.  In addition, the symposium also invites parents, caregivers and those who work with autistic individuals to speak and discuss their personal or professional experiences in the autism community.  The symposium runs from 10 AM to 4 PM and is held annually on the last Friday in April.

I was only there for the afternoon and I regret not being able to attend the entire day; the presentations, discussions and information I received was extremely valuable.  The most insightful presentation and discussion for me was the the topic of  “Suicide and Autism Spectrum Disorder” which was presented by Jayne Wildasin of Crisis Intervention Services.  The statistics were extremely surprising to me, I was not aware of this issue within the autism community.

During her presentation she stated that “autistic children, contemplating or attempting suicide, are 28 times greater than those of typical children“.  Jayne mentioned that with many kids, whether on the autism spectrum on not, children who end up committing suicide usually begin with self-injury behaviors (cutting, scratching until skin bleeds, etc.).

My son, Christian, does not understand the concepts of life and death, however he has hurt himself during severe meltdowns.  His self-injury behavior only happens when he is in a violent massive meltdown; his meltdowns usually begin with some sort of property destruction, then he begins to hit and kick me and then he would begin slapping himself on the head.  Christian has never made any statements about wanting to hurt himself or take his own life, therefore I am not familiar with this issue.  As participants were asking questions, the topic of bullying came up and how children who are severely bullied are at higher risk for attempting suicide.

Three parents at the symposium, whose children are on the autism spectrum, shared their stories about how their children (ages of these children ranged from 9-18) consistently would speak of wanting to end their lives and how some of them actually attempted it.  I was extremely heartbroken to hear these stories and realized that this is a topic that needs more attention and discussion.  What I also found upsetting was hearing stories of children who were being bullied which triggered some of their children to attempt suicide.  What was even worse was hearing how the schools did little to resolve these issues.   One of the schools recommended that the child (who was being bullied) change their schedule so that they would have less of a chance of being bullied by other kids.  Seriously?  How about disciplining the children that are participating in the bullying?  Outside of this symposium, I have also talked with other parents of children who have been bullied and who are not diagnosed with a disability.  I noticed a lot of similarities in the stories of bullying from various parents with or without special needs children.  It seems like the parents of the victim and the victim are made to feel that somehow they brought this on themselves, or that this is just “personal issue” and the parents and students should just address it themselves.  It is absolutely disgusting how insensitive and ignorant some of our local schools can be when dealing with the issue of bullying. Always blame the victim, it’s their fault, they are different, they have a disability; that seems to be the attitude of most schools around here.  Again, my opinions are strictly based on my conversations and meetings I have had with parents in the local area as well as parents in other states. In addition, Jayne’s presentation made me very aware of this issue and that much more awareness is needed on this topic overall.

After the symposium, my husband and I had a discussion about this issue and realized that just because we are not dealing with this issue at this time, does not mean that we won’t have to deal with this issue as Christian gets older.  This could possibly be an issue for Christian as he gets older and that it may benefit us to learn more about this and be aware of this now.  I am very grateful for Jayne presenting this topic as well as to the others who were nice enough to share their experiences.  Listening to their stories, hearing their pain and frustration in their voices and the emotions they expressed, helped me to understand the magnitude and the importance of this issue.

Parents and caregivers of autistic individuals need more access to resources and services that can provide help and support for this issue.  This issue should not be disregarded because the individuals are diagnosed with a disability.

The symposium allowed parents, caregivers and autism service providers to have an open informal discussion about the issues of bullying and suicide within the autism community.   In addition to this topic, I also learned about another service, which provides services for adults with autism called Focus Behavioral Health which is located in Frederick Street in Hanover.

Check back at this website for information on next year’s Autism Symposium:  http://www.wellspan.org/events/




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RAVE: Hearing From You and Speaking Out

blogpicI honestly thought that when I wrote this blog that no one would read it.  I got so fed up with the discrimination, incompetence of state and local services and the mistreatment my son and I received from the very people that were supposed to be helping us.  I was ready to hear, as I always do that “I am the one with the problem, the attitude  and that I have issues”.   Don’t get me wrong, I have heard these things, just look at some of my blog comments; however, what has surprised me is that I have received more comments with parents sharing their personal stories that are similar to mine and offering support.

My blog might not be the most popular, the most read or the most well-written blog, but it actually did what I wanted it to do; it encouraged some to come forward and share their experiences.  As parents or caretakers of individuals with autism, the experiences are not h always “warm and fuzzy” like everyone wants to hear.  We struggle, we cry and sometimes some of us wish we were no longer here to have to deal with this experience.   Unfortunately, those of us who choose to speak the “real” not “warm and fuzzy” truth are often criticized and unfairly labeled.  I know have written this type of statement before, but please remember that you are more than welcome to comment here about your experiences and feelings.

I have been able to meet with people who have commented on my blogs and I love it!  I love being able to meet with others and hear their experiences and realize that I am not the only one struggling.  Meeting with people who have read my blog also tells me that there are massive problems with our local schools and service providers that need to be addressed.  Unfortunately, most parents are fearful of speaking out for the fear of their children losing services or being treated differently.

Mistreatment of individuals with autism (children and adults) and inadequate services will continue unless we, the parents and caregivers unite to speak out.   Think back to my blog, “Kids Club – Denying Services to Children In Need”, oh, did this bring about some nasty comments.  People were so shocked by this blog; however, my story is true, because before I wrote this blog I actually had a meeting with them and confirmed my timeline and facts with them.  I have been told that about 3-4 months after this blog they changed their organizations’ name and now they have a new website with a whole new “fresh, inviting” look.  Did that blog actually do anything?  I am sure most people, especially the people who work there would say “No, that’s all in her head, she just did that blog for attention and to inflate her ego”.   I am not saying that my blog IS responsible for their organizations’ changes, but I do know it DID have some sort of effect on them and made them realize they need to watch how they treat parents and that they need to formally document why they are “kicking” certain children out when they feel like it.  Speaking out is more powerful than you realize; videos are even more powerful.

In addition, to make matters worse, the former editor of the Hanover Sun mentioned to me that one of his co-workers stated to him that he needed to stop “influencing me” to write my blog – and this statement was from a woman.  Wow, I didn’t realize that I am not writing these blogs because of my experiences or trying to encourage other parents to come forward; no, I am writing these because a “man” influenced me.  Really? How ignorant and discriminatory can you be?

This is what I have to go through when speaking the truth of my experiences and this is why I am always so thrilled to hear from parents, lawyers and caregivers expressing similar struggles, frustrations and offering support.  Yes, I have had a lawyer contact me from another state who is representing a family that is going through a similar situation I wrote about.  No, I don’t blog everyday like is recommended to drive traffic and increase readership, I do that for a living for my software company.  This blog is very personal to me and I want to keep authentic and sincere.

I want to keep encourage you to comment here and to share your experiences with others, as well as to speak out when you know something is wrong.  If you want to speak out, but can’t find the courage or resources, please contact me and I will work to provide you the help and resources that may help you.  No, I am not the “Autism Whisperer” by no means, I actually know people who do fit that title, but I am all about speaking the truth and trying to help those in need.  This blog is not about me or Christian, it is about our experiences going through this “roller coaster” of good times and bad times, we too ride that “roller coaster” with you.

As long as this blog is up, please continue to comment or write to me personally, as a lot of you have done.  I honestly appreciate hearing from you, your experiences, your struggles and statements of support.  Some of you experience more “bad times” than “good”; always remember to celebrate and be grateful for the “good times”.  This is something I have had to work on over the past couple of years.  Fortunately, I am happy to report that Christian has been doing very well since the change of medications; we did suffer from violent melt-downs at least once a week, but have now dissipated over the past couple of weeks.

Take care and keep fighting the good fight, no matter who or what tries to silence you.

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RAVE: Some Progress Has Been Made

This blog is a response to an article I had read, “Jenkins: All deputies to get training“.  This article refers to the result of another unnecessary death of Ethan Saylor, a 26-year-old New Market man who had Down syndrome and died in the custody of off-duty sheriff’s deputies just over a year ago.

According to this article, the Frederick County Sheriff’s Office (the office of the off-duty deputies that handled Ethan Saylor) will receive training to help “improve communications with people who have intellectual disabilities”.  The training will include a general overview of intellectual disabilities, recommendations for interactions with individuals with disabilities and hearing stories and experiences from those who have family members with disabilities.

This is a start, a start in the right direction anyway.  I would love to see this training program available here in the Hanover and York areas.  After my personal experience (Coming to the last resort..) and hearing from other parents who shared similar experiences with me, this training is overdue and much-needed.

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RANT: Messing with Medications

I find it extremely stressful to have to always worry about the medications Christian is on; worrying about the short-term and/or long-term side effects is emotionally draining.  I don’t think any parent really wants their kids on medications, I know I don’t, but without them Christian is completely unmanageable.

Christian has been on Risperdal since June of 2009.  He immediately began to gain weight and by the end of that summer he had put on 30 pounds.  We have tried various medications and Risperdal seem to work the best for keeping Christian calm and causing minimal insomnia.  He has now gained over 80 pounds and considered “obese” and I am very worried about his increase for diabetes.  Therefore, last week I made the decision to switch him from Risperdal to Geodon.    Two years ago, we had tried Geodon but it increased his insomnia during the first week; having to get up at 3:00 am for three days that week was enough for me.  We were very disappointed with having to stop the medication because it actually kept Christian very calm and content and it didn’t cause him to overeat.  That is why we want to try the medication again.

His first day being on Geodon was January 28th, which I gave him in the morning.  His teacher informed me that he fell asleep at school for an hour and fifteen minutes.  I thought that was strange since it kept him awake during our previous trial.  The second day I gave it to him again in the morning and his teacher reported that he became sleepy and drowsy; asking to take a nap.  They were able to keep him awake, but obviously it doesn’t take a rocket scientist to figure out that he is having a much different reaction to the medication this time.

He has always had sleeping problems, so this reaction may actually be a “blessing in disguise”.  For me, being able to find a medication that keeps him calm, less hungry and makes him tired is literally like “hitting the jackpot”.

Let’s hope things get better.

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RANT: Cops Kill Mentally ill Teen

This headline “Cops kill mentally ill teen” is what I came across today while browsing Russia Today website.  My previous blog  “Coming to the last resort…” discussed an incident very similar to this story.  Ironically, what the police officer said to these parents is similar to what I was told: “I don’t have time for this. Tase him. Let’s get him out of here.” 

If you read my blog you will see that the EMT stated he didn’t “want to deal with this” and the police officer said, “if your son acts up we will taser him.”  The only way to address these issues is to speak out about them, so that a dialogue can start and solutions can be created.  Education and awareness on how to properly handle people with mental and physical disabilities can go a long way.  It could have possibly prevented this horrific tragedy.

The 18-year-old weighed 90lbs and was holding a screwdriver.  Yes, he was having a violent episode and he did threaten to hurt his mother.  The parents did the right thing by calling for help and the police officers should have transported him to a facility for disabled adults.  There was no need for them to shoot him; they shot him because of ignorance.

We (parents/caregivers of the disabled) are told to call 911 if we need help; unfortunately when we do we are often made to feel like we are being an “inconvenience” as well as putting our disabled loved ones in harms way by the people who are suppose to be helping us!

Please read the article here:  http://rt.com/usa/cops-kill-mentally-ill-teen-283/

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RANT: Coming to the “last resort”…

Last night was the one of the worse nights we have had with Christian since 2010.  We were home with our TSS, and at 3:30 we took Christian for a walk, instead of playing in the snow.  We were planning on going to the local Hardees’ to see the Grinch at 4:00.  I didn’t want Christian to get all wet with snow before we went so we proceeded to go on the walk. Christian was whining and complaining, but we decided that he will probably calm down once we were outside and then we could come back home and go straight to Hardees’ Wrong.  While we were walking Christian started screaming and began to hit at the TSS, he hit him in the chest and the face.  Christian then started hitting on me and bite me five times, headbutted me and hit me three times.  All of this while walking through our neighborhood, needless to say I was extremely depressed, humiliated and embarrassed.

We finally got him back into the house, trying to calm him down so we could go to Hardees’. Things got worse, his screaming got louder and louder and he started to bang on all the walls, hit the picture frames, hit the computer, the keyboard and at myself and the TSS as well.  After 45 minutes, I couldn’t take it anymore and the TSS was also getting overwhelmed.  Therefore, I called 911 and asked that my son be transported to the hospital so that I could meet them there and not have to run the risk of him hitting and screaming at me while driving there.

A police officer arrived first to ask what the situation was and what type of help we needed. I explained Christian’s diagnosis and the situation, how upset I was and that I just needed help getting him to the hospital.  The EMTs arrived and the officer said he would speak to them to figure out a “plan of action”.

The EMT came into the house, I was standing there with Christian and the TSS and I explained the situation to him.  Before I could finish, he rudely interrupted me by putting up his hands and saying “Ma’am, Ma’am  – I am going to be honest with you, we don’t want to deal with this, if he tries to hit us we will taser him.”   “We will try to see if we can get him into the ambulance, but if starts with us this is what we will have to do, so I am just giving you a heads up.”

Wow, really?  Why did I even bother to call 911?  What a waste.  Of course, when Christian saw the ambulance he did not want to get in it.  So, then I asked if I could ride in the ambulance with them, therefore, I could go there and not have to worry about driving and have Bill come pick us up.  The female EMT look at me and said “No”.  The officer then said, “I will follow you and if it gets too bad, please pull over and I will try to calm him down and see what we can do then.”

I was so disgusted with the lack of effort of the EMTs to help me, I just went in the house got my coat and keys and got in the truck.  So, I ended up driving Christian to the hospital myself with him screaming and hitting me the whole time.  Should have never bothered to call 911 and I never will again.

Bill arrived at the hospital 10 minutes after I did, trying to get Christian to calm down, the hospital staff was very nice and supportive, they gave Christian a medication, liquid form of course, called Versed, this medication calmed him down within 15 minutes.

My BSC (Behavioral Specialist Consultant) was nice enough to meet me at the hospital and offer us support and assistance through the whole ordeal.  I spoke to Crisis Management at the hospital and they basically told me that they were a “hands-off” service and that they could not come into my home to help me if Christian is aggressive.They said they could talk to me over the phone and give me “guidance and support” while Christian is having his meltdown.  Yeah, okay.

When Christian is screaming and hitting himself and destroying property in the house how in the hell can I talk on the phone?  How are you going to help me over the phone?  I need in-home help when my son is escalating, that is why we have a TSS in the home until my husband gets home from work.  That is why I have often referred to raising my son as a “curse”, because even though I am clearly communicating to the appropriate people and organizations that I need help, I am basically told they can’t help me.  I am doomed to be physically abused by my child that no one can seem to help and basically no one really wants to help.

Families experiencing these types of violent situations need support and assistance as well. Therefore, many families have had to opt for the “last resort” which is to have your child placed in in-patient treatment at a medical facility where doctors, behavioral specialists and psychiatrists can try and figure out what is triggering the child’s behaviors.  This is the “last resort” because many of us parents do not have children to simply “send them away”.  No parent actually “wants” this for their child, but there comes a time when you simply have run out of options to try.

I called our psychiatrist before I left to go to the hospital, telling him what had happened and to please call me as soon as possible.  He called me first thing this morning, listened to what happened and recommended that we increase Christian’s Risperdal again.  If the medication increases do not work, inpatient therapy is the next step.

With that tough decision, we have to actually go through the horrible ordeal of dropping him off, seeing him upset and having to walk away, as well as, I am sure, being subjected to negative and harsh criticisms from others.  Having a child on the spectrum is literally like being on a roller coaster; one minute they are happy and sweet and then without warning they are extremely violent.  Some people can handle this “up and down” behavior, I am getting exhausted with it and am getting to the point where I cannot handle this anymore, physically or mentally.

So please save the insensitive comments you may have, it is so easy to criticize someone going though something you have no clue about.  Raising a child who often lashes out on you physically and mentally, for years, is not a “blessing” – please do not tell me I am “blessed”.

Standing in the ER with my child screaming and out of control is no blessing and I do not enjoy it.  This is the truth about my experience with Autism, whether you agree with it or not – it is MY truth.  This is the way that it is.  No child should have to suffer with this and there needs to be a cure.  However, our society now says that this is statement is “politically incorrect”, there is nothing wrong with having Autism and we just need to learn to be more accepting of it.

I accept the fact that my child has Autism, but I don’t enjoy it and I don’t see it as a “blessing”.  I want a cure, I want my son to be happy and get to experience things that other kids his age experience.  He cannot communicate to us if something hurts him or bothers him, you really think he enjoys this?  I know I wouldn’t.

So if the increase in medication doesn’t work, it looks like the “last resort” is our next step. Welcome to the “real world” of Autism.

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