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On Match 29, 2011, we received an autism diagnosis for my youngest son, 3 months shy of him turning 2 years old. We actually knew that something was not going right and witnessed regression before he was a year. His pediatrician wanted to give it to 15 months old, before pursuing. I was home with my daughter and step son the day my wife took my son to the doctor for his 15 month appointment. I was actually un-employed at the time. I remember sitting in a chair and her telling me that they think it is something neurological. I felt like someone had just kicked me upside the head. I couldn't speak. She asked if I was okay and I said no and left the room.
During that time frame, my daughter who is 8 years old was born with spina bifida in 2007 and underwent surgery at 2 weeks old. During the last 5 years, we also started noticing bladder issues with her, which many kids with spina bifida do have. My 15 year old step s 10 at the time, on was also diagnosed with Aspergers in 2012. All of these things actually got me to a point where I started questioning things like is God really real and why would he allow this to happen. I grew up in a Christian home, so I have always believed in God and as many people do, believing that everything is going to be okay. It wasn't! It sucked and I felt like all 3 of our kids got screwed! I was not only mad at God, but questioning his existence. The worst part was before my youngest son could actually speak and we had to piece together clues to figure out what his needs might be at certain times. It was heartbreaking, to be honest! I was also un-employed and spending lots of time on social media between searching for jobs. I took on several issues in the autism community and did the vax versus smart vax discussions. I found that I was much angrier after getting involved in those. I have certain beliefs about them and do comment every once in awhile now, but honestly, I feel that should be the parents' decision not some governmental agency. Let's just say that I see things that many don't due to my job. I also do not believe that there is just one thing that causes autism.
Fast forward 5 years at 6 1/2 years old, after lots of meltdowns, sensory processing issues, not speaking until he was 4 years old, things have changed, yet still dealing with autism. It is still a daily challenge with the autism x2 plus the spina bifida. The thing is, what we have learned and we have coped. I no longer question if God exists and am no longer angry at him. I do believe that when we hear things such as hard times don't last forever, the people saying them has no clue and has never had to deal with long term illnesses or conditions.
Our life has definitely changed since our first year of dealing with autism. My youngest son has made huge progress. He can speak, still garbled at times, but shows original thought. He is learning with my wife homeschooling him. I am back to work in the field that I love and the position came out of nowhere and not to mention, was part time with good pay for doing what I do. God definitely had a hand in working that out. My step son is now 15 and he still has certain issues, but for the most part is handling life and public school. My daughter is making progress as well. I have learned that it is okay to cry, it is okay to question the government and demand answers, it is okay to question God, but staying there and staying angry or down, does not change anything. I think that the biggest factor in helping children on the spectrum is by interacting with them on a daily basis and treating them like they are part of the family. I also think that finding the right therapies and therapists will improve things dramatically for them. You may have to go through a few. We fired 6 between OT and PT. ABA is touted as one of the greatest therapies for children with autism. It actually made things worse for my son. I don't doubt that it works for others, but my point is, pay attention to what your child can and can't handle. Don't blindly follow the recommendations of others based on their child's response or what they think they know. Go with you and your child's situation.
On a closing note, DO NOT ever give up on your child or yourself. Things will be tough and things will change. Sometimes worse and sometimes better. Hang onto the happy moments. Burn them into your memory and hang on to them during the rougher times.
World Autism Day 2015
Wow! Tomorrow, April 2nd is World Autism Day, again! We have been on our train ride for 4 years now with my youngest son who turns 6 in July and a little over 2 years with my step son who is 14. We have actually been on the journey longer than that with both, but just didn't know it. We knew that something was not right, but getting a diagnosis was another story.
With my youngest son, we knew before he was a year old. I will never forget my wife taking him to the doctor one day after he had turned one. I will never forget her telling me that the pediatrician thought it was something neurological. I felt like I had just been run over by a semi truck and was absolutely speechless. Our son had met every one of his milestones up until 9 or 10 months of age. After a few minutes of me just sitting there silently, my wife asked me if I was okay and all I could do was shake my head to indicate "no". I then excused myself and went to the bedroom where I cried for what seemed like an eternity. I got up, dusted myself off and prepared to find out what was going on with my son and to get answers. In March 2011, after jumping through many hoops and hurdles and getting no cooperation from a so called specialist in neurology, I told our kids' pediatrician to get us to a different one, even if it was out of town. The pediatrician initially thought that my son had cerebral palsy. After making a 200 mile trip and meeting with a different neurologist, we got our answer. Our son was on the autism spectrum and so began our official journey with autism on March 29.2011. When it came to my step son, who was diagnosed in 2012, it was actually almost a relief to get a diagnosis that fit, so we could start getting him the help that he needs.
On world autism day, we will be thankful for our children, just like we are every other day. We will celebrate how special both boys are to us, but the autism? Nope, I don't see anything positive about the disorder. I don't find anything that it has gifted our boys with, cute or quirky. I find it to be a huge road block and something that must be dealt with. Both of our boys have made huge strides with the appropriate therapies. Our youngest son can speak, which he didn't do until he was older than 3 years old. He still has hurdles to over come with his speech and sensory processing, but has moved forward and not given up. Our oldest can communicate his thoughts much better and seems more connected. He too has many hurdles to over come. The thing is, where would they be without the autism? Sure, there are no guarantees in life to begin with and raising kids is difficult enough in and of itself. Add in the chaos created by autism for many kids and then trying to figure out what works best for them, which therapists are the best for them (between OT, PT and speech, (we fired 6 of them before finding the right ones) it is extremely stressful for both the person living with the autism as well as parents and siblings. In my opinion, autism is one of the craziest disorders that I have ever dealt with or learned about. Certain things change daily or in my youngest son's case, hour by hour. When you see a child extremely miserable in their own skin, not being able to wear clothes, not being able to communicate even their basic needs to you, head banging and other aggressive behaviors, it is a tough pill to swallow. I am thankful that our boys have made the progress that they have made and I am thankful that my wife and I have grown as special needs parents. I am thankful for all of those who God has put in our lives along the way, who have helped our boys get to where they are today and I am thankful to God that things have not been worse than they have been for us. No, it has not always been pleasant and there have been scary times, but I read about many families who are dealing with so much more than us, so I am very thankful that our situation is not worse. As far as autism itself, I am not thankful for at all. Some days it is so difficult to watch that I have to disconnect myself or go back in the bedroom, so no one sees, and let it out..
As far as awareness goes, I think that it is great to make others aware, but so much more needs to be done. We have parents who are killing their own kids, we have families being split apart through divorce, we have CDC officials hiding a a key group in a study of the MMR vaccine that could show a possible link to autism and we have a government that is not moving quickly enough. The current rate scares me to death. When is it going to stop 1 in 20, 1 in 10, 1 in 5??? Then what is being done on a massive scale to help the parents or help the children once they grow into adulthood? I think that there are several possible environmental factors, but no real studies being done when it comes to that. They are more than happy to do studies that are truly lame and blame it on genetics.
In closing, I think it is great to tell the world about autism, but more needs to be done to find a cause, a possible cure and to help those families living it every single day of their lives!! What are your thoughts on world autism day? What areas do you feel need to be changed when it comes to autism?
Things I do with my son
Our youngest son was diagnosed with PDD NOS, SPD, Speech delay, etc. 3 years ago. In the beginning, it was hard to watch as a parent because he may have 1 good week and 2 or 3 really bad ones where he would melt down and just be miserable. Thankfully, the pediatrician started OT, PT and speech therapies based on his symptoms, prior to him being actually diagnosed.
Once we did get diagnosed we were fortunate enough to already have the at home therapies in place. His speech therapist is the only original therapist. We must have fired at least 5 or 6 between PT and OT's! LOL People were telling us that they knew sensory processing and they did not, so if we saw that and didn't feel comfortable, I was calling the home health agency and telling them we wanted someone else! Now, we have PT and speech at home and OT at a facility, but he can handle that now.
The one thing that I have always tried to do is engage my son as though I understood him, even when he could not communicate, and I got down on the floor and played with him and still do to this day. As far as being available for my wife and kids, my situation was perfect because I was un-employed. Not fun for me as far as career movement goes or good on our pocket book, but I was available for all the good and bad times. My son has changed dramatically over the past 3 years. He turns 5 this summer, but his therapies have worked. He can talk now. He still has garbled language, but that can be worked on. Now, we play cars and action figures and he makes the cars and guys talk. Our two other kids who are older, also play with him and interact with him.
I think that the biggest factor is his progress has been the approach we have all taken with him and that has been to include him as much as possible in our play, our conversations, etc. We all encourage him, but understand that he will have his meltdowns, struggles, etc. and we encourage patience. Patience, Love and engagement, I think are the three most important things in helping a child to progress.
For a long time, I would have to just take about 30 minutes per week to myself and disappear into the bedroom and just let out my emotions, because it would just build up. Same with my wife. Now, even though he still has certain struggles that are different, I hang on to the smiles, the laughter, the affections he sometimes shows and use it to get me through the more difficult times he has.
What do you find is most helpful with your son or daughter? Do you have any tips that you would like to tell others about?
This is an autism non profit center local to my area of South Texas. They are a wonderful community resource and are having a shirt sale fundraiser as part of their autism awareness campaign. Below are the links. Please help if you can and please, for sure, share and re-tweet this post!
We are back!!!!!!!
It has been some time since we have last posted or shared anything on facebook or twitter, other than our daily paperli newspaper.
We have had some changes and are no longer a non profit, but instead parent advocates who will be posting our thoughts and stories about our personal journeys with autism and what we go through while raising a 4 year old and 12 year old boys who are both on the spectrum.
We will begin posting to our blog again as well as facebook and twitter
I just wanted to share this. It does cost to attend the webinar, b
5-Week Online Course
Wednesdays: January 16 - February 13, 2013
Join Heather T. Forbes, LCSW, live for the next five Wednesday evenings for her ONLINE "Beyond Consequences Classroom" course.
Heather's newly released book, Help for Billy will be the guide for this course and will bring this book to life.
Click here to find out more.
This course will focus on the following school issues:
5 Weeks of LIVE Support
Wednesdays: January 16 - February 13, 2013
Each of the 90 minute classes with meet at the following times on Wednesday and you'll have a chance to ask YOUR questions each session:
9:00 p.m. Eastern
8:00 p.m. Central
7:00 p.m. Mountain
6:00 p.m. Pacific
Each course will be recorded as an MP3, so if you miss the live class, you will still have the information from each session. Each recording will be available within 24 hours of the live class as a download. This also gives you the ability to build your library with all the recordings for future use.
Register and Receive "Two-For-One"
Your registration fee includes two people for the price of one. You and another support person (teacher, principal, guidance counselor, aide, husband, wife, partner, co-parent) will receive all five instructional sessions of LIVE interactive webinar training! This means if you are in two separate locations, you each will be able to log into all the sessions from different computers. This gives your child the abilitiy to have the people in his/her life working from the same framework to ensure the very best academic year.
Don't just "hope for the best" the rest of this school year. When children become challenged in the academic environment, rarely if ever, do things simply work themselves out for the better. Proactive measures can bring about the changes your child needs and provide a much better academic experience. There are many ways to advocate for your child's educational experience to be the very best it can be for him/her!
Click HERE to find out more.
It is estimated that 90% of children consistently "labeled" as difficult in the classroom, have experienced some degree of trauma and sometimes face extreme learning challenges.
"'What we want to see is the child in pursuit of knowledge, and not knowledge in pursuit of the child."
- G B Shaw
"Feelings are not supposed to be logical. Dangerous is the man who has rationalized his emotions."
- David Borenstein
"Change has a considerable psychological impact on the human mind. To the fearful it is threatening because it means that things may get worse. To the hopeful it is encouraging because things may get better. To the confident it is inspiring because the challenge exists to make things better."
- King Whitney, Jr.
"Really great people make you feel that you, too, can
- Mark Twain
"Education is not filling a pail but the lighting of a fire."
-William Butler Yeats
"Too often we give children answers to remember rather than problems to solve."
- Roger Lewin
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I just want to take this opportunity to thank all of our followers and wish you all a HAPPY THANKSGIVING!! I hope that you all have a great day tomorrow and safe travels if you are going to be on the road. This time of year always makes me thankful for family, friends and all of those who are helping my son in his battle against that crazy thing known as Autism! Bless you all!
My 3 year old earlier this school year, spent 12 days in school in mostly a mainstream pre-K class. After those 12 days, the results were horrific, to say the least! He regressed in many ways, such as no longer using his words, increased head banging, no longer eating, and continuous sensory overload without recovering.
We actually took him to the doctor and he had lost a little bit of weight due to not eating. He has always been a finicky eater and we have had to supplement with Pediasure on many different occasions in the past and again during this episode.
My son has been out of that environment, per doctor's orders, until we can resolve the issue through ARD meetings. We are going on almost 4 weeks of no school and my son has recovered quite a bit. He is talking more again, using that 25 word vocabulary he has, and is getting to where he tolerates things better again and is eating to where he gained his weight back. Now, we still take my 4 year old daughter to pre-k at the same school every morning and we usually take Robert with us. Something of interest is that we tell him that he is coming home with us and not going to school. He actually has sensory issues just from going up to that school, even though he stays in the car with me. And many days, it actually affects him all day long to where he will be very clingy with my wife, very impatient and have several meltdowns. Our cure now is going to just not even take him in the mornings to take my daughter to school! In all likely hood, I don't see us getting him back to school this year. I think that he is better of in a more therapeutic environment for now and then my wife, with her educator background, will work with him on school stuff and home school him in a more sensory friendly environment.
How is your child doing in school? What is the worst you have seen when it comes to your child's sensory processing issues
What a Day - The ARD Fiasco
Today, I attended my first ARD with my 3 year old's elementary school. My wife attended the initial ARDS when we first got him into school in the pre-K / PPCD class. He actually attended 12 days of school and then has been out for over three weeks due to sensory overload, regression and the fact that he stopped eating. Honestly, it felt like we were back watching the regression between 9 and 12 months all over again!
Needless to say, I was maybe there for 30 minutes, but it really messed up the rest of my day! The thought of what took place and them moving a little but not to where we need to be. And the whole educational versus medical autism train of thought came into play. I had heard of this, but never have seen it until today and it is real! And what makes no sense to me, is that these people are not medical doctors. They do not have a medical degree or their physicians license, yet they think that they know what is best for my child?!?!?! And I have news for them.... When a child has medical autism, they also have educational autism, because if they needs are not met, especially those with sensory processing issues, they will not learn a thing! And how can a child learn with 27 students in a noisy classroom with all sorts of stimulating things on the walls, plus through in the fluorescent lights and Houston, we have a problem!!!
Anyway, I am hoping that we will eventually resolve or he will not be back in that school until he gets a little older and can maybe handle it all better without the regression, etc.
Have you had a similar experience? What was the outcome?
This blog will have a variety of posts about autism in general, dealing with autism from a Dad's perspective and hot items for the south Texas region.