Friday, May 25, 2018

Autism & Mental Illness

Its been over a year now.  My son continues to have difficulties with aggressions.

Once again, just like the NICU, I hate that I can't help him while he struggles.

 While we are in the middle of this nightmare of aggression and autism..  We  currently  on our second  inpatient hospitalization and been here almost two months.

As mentioned from my last post, my sons behaviors came on quickly and no medications or behavioral interventions have helped so far.  This time around we spent FIVE  days  in a local ER  with untrained staff  that treated my son unfairly as we waited for a bed.

If i had to choose a positive in all this we were able to get a bed in to one of the only 4 inpatient facilities in the U.S. that specialize for autism, developmental disables using a multidisciplinary approach  so that these kids have a chance.

While here a friend wrote this in our local paper this article and shared her story on this journey. Certainly a lot of similarities to what we are going thru now.

I hope Connors story inspires you and get the word out . We need to do better for our kids.  They are people tow and ONLY FOUR specialized inpatients is not acceptable.


When this journey is behind us I plan on sharing our story more as well.

I hope anyone who reads this finds comfort that they are not alone.  The struggle is real.  

Wednesday, August 23, 2017

The lost summer; Agressions and Autism

What do you do when your child is  aggressive toward you and caretakers?

Words that come to mind:  Helpless. Hopeless. Horrified. Angry. Sad. Perplexed?

Aggression's are never easy.  Statistics show 60% of those with autism exhibit aggression toward caretakers.

When the child is younger and smaller, it may be little easier to manage and in society its  "little" more accepting.  When your child is older, teens/young adult.  It is a complete nightmare.

Our son started about eight months ago, rage/explosions periodically. At first geared toward one person, and always during times of high anxiety.   It has been horrifying, exhausting and maybe even a bit annoying.

Doc's say severe anxiety/OCD.  At first they seemed to think it was his SSRI making him behaviorally "reactive".  Apparently SSRI's sometimes work opposite for those with ASD (Autism Spectrum Disorder).

Around June, his Anxiety's seemed to worsen,  rages/explosions got worse. Daily grabbing, scratching, biting, screaming, pulling hair. Resulting in bruises and scratches on many of us including him.  He is constantly on edge with increase in perseverations.  We tired a few medications with no relief.

After these incidents  he is almost always, frightened and subdued, and will isolate himself as a way to control himself.   The impulsion just takes over.

Now, my son has always been a big quirky but always happy.  SO, what is going on??

He has had to miss so much this past summer, starting with his his 8th grade graduation and dance in June (dance's something he has always enjoyed so much!) ...We have cancelled several family parties, events and postponed our Disney vacation (3x).

He wasn't able to attend summer camp  at the local  Recreation program because they lacked support to accommodate his behaviors.  We had to pull him from Therapeutic Horse riding because he couldn't handle it.  Things he used to LOVE he has no interest yet.

He has lunged at me several times at me while driving that resulted in me purchasing several types of safey devices such as:  safety buckle cover and a safety harness  (For other safety suggestions.  Take a look at Autism Speaks Safety Tool Kit.)

We have a team of people BCBA's, Social Workers, Doctors, several medication trials,  therapists. trying to figure this all out.

I even went the extra, "mom crazy mile' and contacted his pediatrician to rule out anything medical.  We tested for Thyroid, Lyme, PANDA's  (rare but why not).  Everything negative.

Now, It has been documented that 70% of autistic children and adolescents have GI Abnormalities and once the GI issues are treated aggression and problematic behaviors sometimes subside ...still exploring this route...

Another helpful resource for me has been Challenging Behaviors Tool Kit.

TACAnow (Talk about Curing Autism) as also been a great resource for me.

So, I have dubbed this as being the lost summer for him..He has spent most his summer, with the exception of the Extended Year Program at school in his room and worse we have a lot of regression.

As always, comment below if you have a story or tips and strategies that have worked for you.



 
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Monday, July 31, 2017

Review: AngelSense; Just in Time for Back to School

Given the increase in my sons behaviors the past few months I have been beside myself with worry daily trying to figure things out. Not being in control has been the hardest things for me and this is going way back to the NICU days. 

Somehow my son's anxieties have developed into social anxiety, near anyone or in a crowd we can gaurantee an aggression or two will follow. Each day is different and even bolting has now become an issue.  When he's not agitated he has been testing his independence and wandering.

I have also come to a realization that when he is at school and/or on community trips we as parents put so much trust in his care takers they are with to do the right thing.

There has always been the "what if" lurking in the back on my mind from time to time. They all need a guardian angel of some sort. 

Thats when I discovered Angelsense it just seems to be great solution for us.  Real time alerts that will tell me where he is, tracking the bus, alerts when when he arrives or leaves the school/program.

With Angelsense we can even listen in to conversations currently happening (could of used this in 4th grade) !!

Even better, AngelSense also has a new feature they introduced called, AngelCall, its a 2 way voice,  the app allows you to call  talk to your special needs child without him/her having to pick up the device.

With AngelCall you can;
  • Instruct your child to stop, avoid a road, or stay away from any potential threat
  • Give your child more independence knowing you can always help from afar
  • Calm your child and be by their side when they need your support
  • Stay connected every day.


Given my son's need for safety independence these days. This is product is perfect for him and me.

BONUS... all of the customer service reps at AngelSense are special needs parents. So, Not only to you get a great device but you also get support from people who "get it".

Highly suggest this product for not only for the safety but for peace of mind as well.  







https://www.angelsense.com/?tap_a=17059-377e36&tap_s=82902-d4d5da

Tuesday, May 30, 2017

15 (Adaptive) - Summer activities to help YOU and your kids appreciate nature

What is  your Autism (ASD) chil kids doing this Summer? For many of us Summer time with the kids is a time to enjoy the outdoors, the sunshine and if you're lucky the ocean.

As much as kids love Summer holidays, keeping them busy can be a real chore! More so if your child has special needs.  If you don't have luxury of an adaptive Summer camp then it's up to you as parent to find things for the keep your ASD child busy.

We have all seen the studies that show children spend a lot of all their time in front of a computer, tablet, phone or other screen, with a child who has Autism that  to that could double, even triple!... and we have all heard that spending too much time in front of a screen can have a detrimental effect on there health and wellbeing.

However, studies have also shown that taking part in nature-based activities helps those who are suffering from mental ill-health and can contribute to a reduction in levels of anxiety, stress, and depression. In fact, a daily walk in nature has showed decreased activity in a region of the brain associated with a key factor in depression.  Why not, give it a try with your ASD child?

One in four people are estimated to experience bouts of mental ill health and it's on the rise. Prescription medication of antidepressants are also at a record high level and the demand for more invasive treatments are also on the rise. Health and social care commissioners are examining and commissioning different options for cost effective services for mental health and one of these options is a daily walk of 90 minutes or more. We need to learn from the past when kids got excited to spend their time climbing trees and building dens rather than spending hours inside.

 Joe, at Nature Rated understands this all too well and has put together an infographic on 15 Summer activities to help your kids appreciate nature.

Head on over to his site for step by step instructions to get your kids out and about enjoying nature.


Bio:

An outdoor enthusiast, Joe is the lead editor at Nature Rated; a website which rates and reviews the best outdoor gear for people who quickly want to know what to get. He believes in no fluff, to the point reviews, which help you choose the right gear for your next adventure. Whenever daily life gets him down he heads to the nearest lake or river with his kayak and camera spending time recharging his batteries.


Monday, May 15, 2017

How I am Going Toxin Free for Me and My Family...

We hear it everyday and almost anywhere we go, clean eating, gluten free, casein free, preservative free, harmful chemical free, toxic free products,  will help with behaviors and overall Autistic Behavior.

When my son was a baby I just wanted him to EAT, clean eating was NOT in my radar. He had a feeding tube and he just simply, needed to survive.  He barely even took a bottle.  Anything he would eat by mouth was a bonus. I do believe his first food group was an M&M!!

However,  I feel now, that has come back to haunt me.  You can find tons of information on clean eating and its benefits if you Google it.  After reading a lot about it, YES, I am now slowing cleaning up his diet and mine (Possibly a little late on the ban wagon but I guess, better late then never).

Here is a great blog with detailed information on how to clean up your child's diet and your own. It can be overwhelming but as suggested in the blogs, start small and simply just start looking at and knowing your ingredients to avoid.

While researching cleaning eating another can of worm's opened.  I came across something more then just food. Something we don't hear a lot about is the toxins in everyday products we use.

So what about the products we clean with?

We may at times, (depending on where we shop), see harmful chemical free items on the shelves next to all the other cleaning products but what do we know about them?  Certainly Bleach and Ammonia cleans better than Vinegar doesn't it? That's what we were taught to believe anyway.  This has proven not to be true.

Recently words like "Paraben"s (a group of compounds used as preservatives, derived from petroleum, an endocrine disruptor which cam mimic estrogen and can  also block effectiveness of cancer drugs like Tamoxifen).

 "Fragrance" (Parfum, legally hides an untold number of chemicals in a product. linked to ADHD, Autism, birth defects) and so many more have been coming to my attention.

"Talc"- Belongs to the asbestos family.

Did you know according to a Harvard study found that fluoride ingestion (toothpaste) harmed children's cognitive abilities and development?? I know my child still is learning to spit at 15, how much has he swallowed??!!

The list goes on and on.  Here is a list of ingredients to avoid in skincare & cosmetics and here is a list of ingredients to avoid in household cleaners.

There is so much to learn.  Why have I waited so long?  There are a lot of  Reports and studies that have proven many unsafe products. I am just surprised so many are still on the shelves.

Then there are your everyday cosmetics. The average woman is exposed to 168 chemicals on average before she leaves the house in the morning from shampoo, to creams, makeup toothpaste and more....Our skin is our largest organ and absorbs the harmful ingredients in 26 seconds.  I also found out that Europe bans over 1,300 harmful chemicals from personal care products. The United States bans 11. (source from EU cosmetic directive 2013, campaign for safe cosmetics).

So where do you start?  I had same question . Again Mamovation has all the information you need harmful chemical free products  for you home.

I found a great product line that I am starting to fill my home with called PUREhaven Essentials.  Its product I believe in, all products are harmful chemical free and they have did a great job offering a bundle kit to get you started on the right track.



For a friend of mine,  told me the The Dream Cream lotion has outperformed any prescriptions her daughter was given  for her eczema!   




The boo boo stick (got to love the name) has helped sores on my cousins face, she is currently going thru chemotherapy for stage 3 breast cancer. I was thrilled this product helped her.  





The surface cleaner has blasted away all the goo in my kitchen and is safe for food and pets!




There is also a products babies.  Which I am definitely going to purchase for the many baby showers I have to attend this year.


IF interested, you can contact me for more information and I will give you a "number" to enter when placing your order.

As always, any comments or suggestions please not below in comment session or if interested contact me. nicumama2@gmail.com





disclosure;  I have tried all products through my own research. All opinions are my own and meant for general information only not medical advice. 



Thursday, March 9, 2017

NeoSight - connect with your newborn in the NICU

The CEO and founder of NeoSight and also a mother to two preemies that were in the NICU is developing a telemedicine appliation called NeoSight.

NeoSight is a new Telemedicine application that gives parents the opportunity to connect with their newborns and the NICU through 24/7 livestream, multiple forms of communication with staff, and updates on progress as it happens. 


They are in the pre-seed stage, and would like to get this survey out to all potential users.

As all mom's do we stick together, can you imagine such a wonderful application being created!


I think if I had access to this I wouldn't of woke up at 2am and 4am to check on my son in NICU and annoy the nurses, did he eat? sleep? poop? how much does he weigh?  

I am sharing this survey with you, please help another mom out and fill it out, so that she can make this dream come true and help other parents. 

Here is the link to the survey:

Friday, February 10, 2017

Traveling with your Special Needs Child

Is it different to fly with a child with a disability?   I think it is!!

There are many posts and articles on traveling and special needs. I'm going to give you my take.

Traveling in general can be difficult.  Traveling with a child with a disability, for me, sometimes feels like double, almost triple the work.  Mostly because it can be unpredictable and I have to be prepared both mentally and physically for any scenario that can occur.

Tantrum's and emotional outbursts are our newest challenge for us and it is very unpredictable, which can make things more stressful.

One of the first things I do when booking airline tickets, is to alert the airline.  I think its important to inform the airline staff of any developmental and/or medical disability. Although this is not necessary, it is just a good idea.

Most airlines make special arrangements and exceptions for special needs. For example having to go through airport security can be less of a hassle if airlines know ahead of time.  Experiences we have encountered, is my son hasn't had to take his shoes off or has been able to bypass security check all together.

When he had medical equipment, learning what I needed to do with these items, ahead of time was very helpful,  and of course  don't forget a doctors letter indicating your child's disability and any medications needed to carry on the plane is always a plus to get thru security quicker.

I always familiarize myself with the air travel rules, altho most of the rules are the same, you will find that some rules can differ. 

 Know the airport you will be visiting if you haven't been there before, (you can usually get a map of the airport on the airlines website) noting where the baggage claim is, taxi service or rental cars are ahead of time instead of stopping and trying to figure things out on the fly can get you in/out and to your destination as soon as you can.  

Security:  check out TSA security guideline's here.  There is a small printout you can give with medical condition and disability you can hand to the TSA agent.  Or you can apply for TSA pre-check.

What to bring:  For my son, its not just book the tickets, pack a bag and a good book deal.  It's coming up with creative ideas and thinking of things that will keep him distracted and busy for the entire trip (on/off the plane).

Examples:  there is the ever so trustworthy iPad, we don't go anywhere without it (note: be sure to download any movies or games needed prior to flying NEVER count on having wi-fi access on an airplane, it is very spotty. That route has never worked out well for us.)  currently my sons other interests are are drawing (well having me draw) and cutting out the drawing (and YES you CAN carry a scissors on the plane if its less then 5 inches,  found that out the hard way)... silly putty is always fun,  Also,  depending on the "mood" and if he is focused, lots of social stories on what to expect during and after the flight and the rest of vacation can be helpful.

Altho most airline do a good job with disabilities.  I have to give a shout of to one of my favorite airlines, JetBlue for personal reasons they have done the best job accommodating my son and his disabilitie.  There are also many posts/stories on why many parents prefer JetBlue.

Also, there is a program called "Wing's for Autism" Check out this website for upcoming programs. We just recently went.  They did a good job with mimicking what happens on a rail flight. Our son got to meet the pilots and go into the cockpit.

Here is a great resource from Autism Speaks on other Air Travel resources.

For those families with Autism. There are are now "Austim Friendly Vacations".  We haven't tried them yet, but I do love how more places are offering this.

For those of you who are going to amusement parks such at Six Flags, Disney, Universal Studios etc. Be sure to check in with their guest services as soon as you arrive, most will have disability passes and/or accommodations.  Some even now have sensory break areas to make your visit more enjoyable.

Taking these steps is a great way to ensure your travel plans run as smoothly as possible.

Also, in case I missed anything here is a guide from credicards.com that may be helpful

If anyone has any other tips on traveling please comment below and share...


Happy Travels...

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