Recently we had a visit with Recker's Developmental Pediatrician Dr. Robin Blitz (we see her quarterly, she diagnosed him). I know I've said it before and i know i'll say it again, she is the best thing thats happened to us (regarding Recker's ASD). Because she is so completely thorough and she listens to every fear, question and concern, our appointments last 1 1/2 to 2 hours average. Well this last visit Jeremy was able to be there and help me out with Recker and just the emotional support alone was worth him being there. I get anxiety and stress about these appointments for weeks prior to it, and like I've mentioned before the second i hit that parking garage all those emotions from "D-DAY" come flooding back in and are so overwhelming. Jeremy is so supportive and understanding! Well during this visit we covered a HUGE list of our worries, concerns, problems and fears...
1. Should Recker be in the amanecer program or a self contained SPICE (Autism) preschool class?
2. We can't get him out of our bed! (<-------YES. SERIOUSLY)
3. Still no speech/language. Concerns about his Regression.
4. Recent/New Onset Aggressiveness towards others.
5. Comprehension. How much of what we and others say does he actually understand?
6. I have a constant feeling of urgency, like i am losing precious time helping him progress.
7. Does she know of any therapists/counselors who work w/families who have a child with a disability.
8. Darting/Running. I can not take him anywhere without carrying him.
9. Are his negative behaviors due to his age or his Autism?
10. ADD/ADHD causing him not progress with gaining speech.
11. Sensory Processing Disorder- His seeking skin on skin obsession.
12. Potty Training.
13. Hearing/Baerh Test.
14. Severe separation anxiety.
15. His Tracheomalacia.
16. Not understanding limits. ie. "you can only have ONE popsicle" leading to hour long meltdowns.
17. Oxytocin- nasal vs. nebulizer.
18. Sleep Study and Gastro Problems.
19. His inability to sense or understand danger.
20. How will he handle the new baby?
Well she covered almost all of these before we even had to ask. One of her biggest concerns, and has been since he was diagnosed, is Recker being a "flight risk." She asked me if he was still "wandering" and a "flight risk" i told her yes and her next question was " have you received a handicap plate or placard yet?" i told her no and without a second thought or hesitation she filled out and signed the paperwork and told me to go get one ASAP. So i have mixed feelings about this, mostly i am all for it because carrying 40 lb recker from the back of a packed parking lot while he is thrashing because he wants down is getting a little hard, and will just become completely impossible once i have the baby. My only reservation is because someone recently said something to me when i mentioned we were getting a handicap placard, "Wow now you're really milking it." I tried to explain to them that its getting harder and harder the bigger he gets and the bigger i get (from this pregnancy), they replied with "well don't you want to get buff arms?" I was so hurt but mostly furious! Everyone please think twice before being so quick to judge.
Anyways i just thought i would give you some statistics, facts and information on how dangerous and prevalent "Wandering, Elopement, Bolting and Fleeing" are in children and adults with Autism.
Similar to wandering* behaviors in seniors with dementia or Alzheimer’s, children and adults with an Autism Spectrum Disorder (ASD) are prone to wandering away from a safe environment. Typically they will leave to get to something of interest, such as water, the park, or train tracks -- or to get away from something, such as loud noises, commotion, or bright lights.
Dangers associated with wandering include drowning, getting struck by a vehicle, falling from a high place, dehydration, hyperthermia, abduction, victimization and assault.
Because children with autism are challenged in areas of language and cognitive function, it can be difficult to teach them about dangers and ways to stay safe.
- Roughly half, or 49%, of children with a autism attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings
- More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
- Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
- 32% of parents reported a “close call” with a possible drowning
- Children with ASD are eight times more likely to elope than their typically-developing siblings/peers
- Half of families with elopers report they had never received advice or guidance about elopement from a professional
In 2012, the National Autism Association found that from 2009 to 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism subsequent to wandering, and that 23% of total wandering-related deaths occurred while the child was in the care of someone other than a parent.
This is such an issue in the Autism community that there are actually tracking/locating devices parents are able to purchase (only legal for children with disabilities) for their children....
Visit http://www.awaare.org/index.htm to learn more!