NEW

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

Moderator: ModeratorBill

maritime2004
Posts: 1
Joined: Fri Oct 13, 2017 12:48 pm

NEW

Postby maritime2004 » Fri Oct 13, 2017 3:41 pm

I do not even know here to begin. I am the father of a 15 month old son, I cannot explain how hard these past two years have been, during my wife’s pregnancy she visited Colombia, and because of that fact we had to undergo zika observation and increase ultra sounds, every 4 weeks to measure our sons heads and other body parts, it was the worst feeling in the world, and it made my wife’s pregency difficult. During the first few scans we were told that his head was in the 3%, and he was at risk. Over time the scans got better and he apparently moved on to the curve. The doctors told us at that time we were running short if we should choose to abort. As a family we were taken back by that statement devastated actually, well moving forward he was born healthy 7 lbs. with a normal head despite what they told us.
We started noticing strange behaviors at 6-8 months old, he was always social, always smiles laughing. A happy baby boy. He did the stomach crawl at 8-9 month crawling normally at 10 months walking at 14 months. Puree foods at 6 months and started solids at 12-13 months, chewing foods have been slow. He does not communicate with us, nodding his head yes or no hasn’t happened yet, he just at 14 months started to point at objects in a unusual way hell point in the air randomly if he seems something. He paces back in forth crawling; he will push his crawler around the kitchen island for 30 minutes or more. He stares at lights and ceiling fans for 2-5 minutes. Stares at the smoke detectors, he babbles mamamama, dadadada babababa but goes periods without saying either, I heard him call for his mama in a slow tone, that sounded strange.
Before his first birthday I was worried about the pointing, clapping, waving and speaking, we had him tested at a developmental pediatrician, he was at risk for ASD, showed red flags, we decided to have him evaluated at a therapy center they recommended 2 30 min sessions of speech and same with OT, we increased the speech therapy to 4 times a week at two different places, and reduced the OT. He now knows some sign language but is not speaking; he continues to show us red flags. We are worried, I am venting.
When he was born, I was so worried about Zikia affecting his brain, what if the scans were wrong, what if….. I was so relieved he was born healthy, I was very happy. Now we have to worry about him all over again….When he was born I wandered what type of life he would live, I wanted two things for him, for him to live 100 years and for him to be happy, anything else did not matter.
I work offshore for 4 weeks at a time, being away from him has been hard, worrying about him, what will happen, what his future will be like. The unknown, he has such great eye contact with everyone, He is too young to be diagnosed currently, and he is undergoing evaluation, we took him to early steps and he is in the process of that. This could be something else or he could be on the spectrum we do not know, we know something is not right, his development is off. We know something is off
We do not know what to expect, I earn a good living for now, but these therapies are expensive, he’s not in the state program yet, hopefully soon, but I often think how struggling families would be able to pay these developmental pediatricians and therapy places, this is a whole new world of special diets and supplements, one autism doctor we visited I suspected of being crazy. Does these therapies work, are they worth the effort. It will be years before we get the answers to those questions. I know I am not alone, many children and many families face these exact problems and worries

luvpiggy
Posts: 103
Joined: Tue Feb 10, 2009 12:59 pm

Re: NEW

Postby luvpiggy » Wed Oct 25, 2017 1:04 pm

Hi,

Thank you for sharing your story. I am the mother of a 19 year old who has severe autism. I am so sorry for all that you and your wife have gone through regarding the Zika scare and now to have to be worried that your son has autism. It's definitely a lot to deal with. If there is any silver lining, compared to when my son was diagnosed, you are definitely in the process of getting the earliest intervention possible for your son, and studies show that early interventions absolutely can and do make a difference. It is absolutely wonderful that your son has learned sign language, and I know it is different and may not be what you expect, but any way that your son can meaningfully communicate is a blessing and is a positive sign that spoken language can definitely develop. There is so much hope for your son! As far as what interventions to pursue, the costs, etc., autism is of course controversial regarding causes and treatments so it is a very personal decision about what to try and what types of resources to expend on the treatments. In general, the consensus is that intensive applied behavioral analysis, 40 hours a week, as early as possible is the best treatment. I am not saying I necessarily agree with it, but that is the consensus. For me personally, if I could go back in time, and things were harder then regarding options, I would pursue more biomedical treatments as part of the overall treatment plan for my son. It's not that we didn't try anything, but I know we didn't try biomedical treatments consistently and soon enough. The reason I would do so is because over the years of my son's life after his diagnosis, I have seen what used to be labeled as "quakery biomed" now gradually become part of mainstream medicine for treatment of autism. The biggest example would be the autism/gut connection. It used to be seen as nonsense, but now those in cutting edge mainstream medicine regarding autism admit that there is a connection, and that it can be very important. My son has severe and serious GI issues that should not have been ignored from the start. Mainstream medical science is too slow to catch on, but there is evidence now that it is catching on, in particular with many physicians including neurologists, developmental pediatricians, and GIs at Massachusetts General Hospital such as Dr. Tim Buie. I am wondering if you would like to read the book "Autism Revolution"? These are Harvard Physicians pointing out what Biomed had pointed out from the start.

But this is definitely an overwhelming time for you, and it is a lot of pressure to make sure that you are doing the best interventions for your child as intensely as possible and still maintain a good quality of life. My son is now 19, and he still has severe autism. I have compassion for my response to his autism in the early days, but at the same time, I wish I could go back in time and enjoy him being that age even with all that was going on. Do not let the fear of the future or the fear that he will develop autism or what type of autism rob you of your precious time with your son being the age that he is. My son is having a hard time right now, but I have friends who have recently lost their teenage sons with autism, and they wish that they could go back in time, even during the worst meltdowns and would put up with anything just to have their children be alive. I am trying to help that motivate me to keep it all in perspective.

Take care,

luvpiggy


Return to “Autism Support/Education/Technology”