Author Archive
Dad’s Walk for Autism Stopped
Gary Kuhre has cut his trek to Washington D.C. short due to family problems. His goal was to walk across the country to raise awareness and money for a national health reform for children with disabilities.
Click Here to see article published by the Reno Gazette.
My family has unfortunately dealt with the “red tape” involved in getting Colton medical evaluations and treatments, so I applaud Mr. Kurhe for his passion and efforts. It’s one thing to come up with an idea on paper, but it’s another to actually get it started. We all can imagine how difficult the absence must have been for his family so I don’t think anyone could fault him for going home. His website, Stride4Autism.com states that he does plan to continue the walk later this year. I wish him and his family the best!
Dads Helping Dads
I just read a great article about a group of fathers in Washington who have formed a support group named “Dads Supporting Dads,” specifically created for fathers of children with special needs. The group is unique because it was formed specifically for fathers, by fathers.
Click Here to see the article: Some Dads have Special Knowledge of Special Needs Kids
It’s a great idea, and it’s given me some inspiration to look for something similar in this area. I’m not sure why it’s difficult for us Dads to get out there and talk with other men in similar situations, but it is. The idea of getting together with fathers who can sympathize, and probably provide a lot of suggestions and ideas, makes a lot of sense. I often find myself complaining that my wife and I learn everything “the hard way,” maybe this is the kind of resource where I could help others, and they could help me.
Do you remember the transition in your social status when you had kids? How suddenly it was weird hanging out with your friends who haven’t experienced overflowing diapers and sleepless nights? Having a child diagnosed with special needs seems like a similar “transition,” to a lesser extent. Very few of our friends truly understand the intense life that we live, and honestly.. I don’t think that they care to hear about the difficulties of raising a special needs child. So my wife and I support each other, and try to keep the heavy talk to a minimum when we’re at social events. The idea of meeting up with Fathers who live similar lives, sounds pretty darn good.
If I’m not able to find an existing group, I think I’m going to have to start one. And who says that it needs to be boring? The gatherings could be a night at the bar, bowling alley, or even a round of golf! Just a place for people of similar circumstances and interests to get together and bounce ideas off of each other. Let’s face it, as soon as our kids were diagnosed, all of our priorities in the world changed. I find it hard to believe that there are more dedicated and passionate parents out there, than those who have special needs children, and I want to meet you.
So let’s hear it, do any of you go to support groups? I’d love to hear any experiences that you’ve had, good or bad.
Diagnosed with Autism, Now What?
As far as I can tell, every parent who has just heard the diagnoses of their child goes through the following stages:
Alarming New UK Study
I am trying to catch up on all of the latest news, and was very saddened to read this story come out of the United Kingdom. According to a Cambridge University study,
“A study has found that as many as one in 58 may have some form of the condition - well above the widely-accepted existing estimate of one in 100.
If so, it would mean that around 210,000 children under 16 in the UK have autism or a related disorder.”
When my son was first diagnosed, I remember reading that 1:210 children were diagnosed with a form of Autism, and in 4.5 years we’re seeing the numbers jump to 1:58? This is very sad news for everyone.
I haven’t found the original study yet, but if I do I will post the link here. Click Here to read article posted by DailyMail.co.uk.
Communities Realizing Autism Is a Real Problem
More and more I’m seeing that different communities throughout the United States (and even Canada and the UK), gathering together to discuss the “epidemic” of Autism. The sad part, is that these communities are holding these meetings because they are already 10 steps behind, and now they’re overwhelmed with the number of children and families that are effected by the disorder.
We actually moved into this school district because it had a full-time “Autism Specialist” on staff, which is not very common in the midwest states right now. I expected a lot of great things to be in place for my child, to include additional resources available for my son tailored towards the Autism spectrum. Unfortunately, what I found is that the specialist is absolutely swamped! She has too many children that she’s responsible for, and even though she’s doing the best that she can, there is really only so much that she can do. It’s hard for me to imagine how a school district handles all of the special needs without dedicated staff on board?
- Autistic Children Need More Services at East Penn
- UNM and the city of Albuquerque host first Autism meeting for the state of New Mexico
- Bismark Tribune reports on the rise of Autism in Schools
I often wonder who the people are that initiate these large discussions. Is it a group of worried parents that have successfully stirred the pot enough to finally be noticed? Or was it that someone “important” in these communities (mayor, governor, school official) was affected personally and then all of the sudden it became a priority? Maybe the teachers have had enough? Whatever it is, obviously it’s a good thing that awareness is at an all-time high. I just hope that as a country we can see that this is a nation-wide problem, not just specific to certain states or communities.
Having to fight tooth-and-nail for the additional resources for our children is ridiculous.
Putting The Signs Together
Thanks for the comments in my first post! Janice brought up a great point, that there are many children who don’t start speaking until they are older. Which is exactly what I was telling myself! What I failed to mention was that there were many other indications that something was wrong, but I had made excuses for each “sign” differently. I never really stepped back and put everything together.
For example, Colton had a very hard time dealing with changes to his environment. It was almost like he had to shut down until he could adjust to the new situation, and then he’d slowly warm up again. I remember going to grab Colton out of the crib, and he was so excited to see me. When we were sitting in the living room, everything would be fine. But as soon as Mommy walked in and greeted him, he would shut down. Krystal had a really hard time with this, but it wasn’t long before we realized that it really didn’t matter who it was. If you weren’t the first person to rescue him from the crib, then you had to slowly present yourself to him in the mornings.
Another key sign that I made excuses for, was his social interactions with other kids in groups. When we would pick him up from daycare, all of the kids would be around a table coloring or playing. In the corner, my son would be sitting and playing with a truck all by himself. My reaction was, “well he doesn’t have the social skills so he doesn’t feel comfortable playing with the other kids.” What I didn’t realize is that it was much more than the fact that he couldn’t talk to the kids, he just didn’t feel comfortable in large groups.
Here is a list of signs that your infant may be effected by a form of Autism, taken from NeurologyChannel.com:
Signs of autism may appear during infancy and the disorder is usually diagnosed by the age of 3. Sometimes the child’s development appears normal until about 2 years old and then regresses rapidly. Symptoms of autism occur in various combinations, from mild to severe.
Infants with the disorder often display abnormal reactions to sensory stimuli (i.e., senses may be over- or underactive). Touches may be experienced as painful, smells may be overwhelmingly unpleasant, and ordinary daily noises may be painful. Loud noises (e.g., motorcycle going by, vacuum cleaner) and bright lights may cause inconsolable crying.
Other signs of the disorder in infants include the following:
- Appears indifferent to surroundings
- Appears content to be alone, happier to play alone
- Displays lack of interest in toys
- Displays lack of response to others
- Does not point out objects of interest to others (called protodeclarative pointing)
- Marked reduction or increase in activity level
- Resists cuddling
Obviously, you can pick out a few of those signs out and they might apply to any normally developing child. But when you put them all together, you start to realize that something might not be “right.” Probably one of the hardest parts of dealing with the realization that your child is effected by autism, is trying to explain the situation to friends and relatives. Because the spectrum is essentially a combination of common disorders, it’s very easy for people to question the diagnosis. I don’t know how many times I’ve heard, “Well, my son did that when he was younger too, and he’s turned out perfectly fine.” In fact, I think that might be the hardest part for parents, dealing with the doubters.
Here are several other lists of symptoms that you should be aware of:
- WebMD.com - Autism Symptoms
- WrongDiagnosis.com - 48 Symptoms of Autism
- AutismSpeaks.org - Learn the Signs
How Not to Find Out Your Child is Autistic
Our son was two years old, and barely used any verbal language. I had been told so many times that “boys develop language later,” that I grasped onto that belief with little hesitation.
Six months previous, my wife had seen a news segment about autism, and for some reason she saw characteristics of our son. When she brought the idea up to me, I quickly rejected the idea. Our son was only 18 months old, how many 18-month-olds are speaking? Sure, he rolls his trucks back and forth repeatedly, but he just likes trucks!
Well, when Colton was 27 months old we finally asked our pediatrician if we could get his speech evaluated. We took Colton to the evaluation, and watched in horror as he failed so many of their “tests.” At the end of the evaluation, I could tell that something was wrong, just based off of the facial expressions of the testers. They, in the most polite way possible, told us that Colton showed several signs that were characteristic of the “autism spectrum.” Our life has never been the same since.
- Do NOT find out that your child is Autistic 6 months after you notice the first signs.
- Do NOT wait for your pediatrician to mention something. Just because their child was a “late talker” doesn’t mean that your child is.
- Do NOT ignore, or blow off, the concerns of your partner. If something doesn’t feel right, then there is a good chance that something is wrong.
Am I trying to make every parent paranoid? Well.. yes. If I had been paranoid, we could have diagnosed the problem 6-7 months earlier. What is the worst that could have happened? My wife and I would have had our son evaluated, only to be told that he’s perfectly fine. So we would have wasted a few hours. Big deal. If you feel that something is not right, even if you are a first-time parent, then take the actions needed to make yourself feel alright about the situation.
+1 for my wife.