Wednesday, April 10, 2019

What I have learned in crisis...

We are now on our third inpatient hospitalization.  Thankful we were able to avoid the Emergency Department this time around. This time, We put our son on a wait list and did a planned admission at the last hospital in Rhode Island.

This experience is traumatizing enough, waiting days in the ED should never be an option for these kids. Its heart breaking and traumatizing enough to drop them off and have to explain to them why they are there and have to be away from home.

https://www.washingtonpost.com/national/health-science/nowhere-to-go-young-people-with-severe-autism-languish-weeks-or-longer-in-hospitals/2017/09/23/25333dfc-997c-11e7-b569-3360011663b4_story.html?fbclid=IwAR2VkkR7r7vkNHokcZJ1-TNY_UPqoYOJh5WyeqTHT7QLyEHeSkyjhX9cU8A&noredirect=on&utm_term=.251980a95b72

Once again we are out of state as Massachusetts does not have appropriate facilities for those on the spectrum and co-morbid conditions.

I feel like I have come full circle from the NICU's long hospitalizations to this...

 I am allowing myself more down time during this admission.  The hardest part for me but I have had more tome to reflect... a lot.

Things I have learned from inpatient admissions:

  • Your first admission will he most heart breaking of them all.  When the door closes behind you and your hear your child's screams.  The second you THINK would be easier, on some level, it might be... by the third,  you know the drill, you know what to expect, you may even know all the staff...but you numb, no words, just existing.
  • none of this is black and white.  none of this can be fixed with one or even five pills. If you get the right combination first time around consider yourself lucky.
  • One good day is just that.  ONE GOOD Day.  Hold on to it.  Treasure it.  This too is a roller coaster ride, allow ups and downs.
  • it's important to have a team that you trust so you can step away and know your child will be OK.  However, that won't be perfect either.  There will staff you won't like, nurses, therapists, doctors.  
  •  know and expect mistakes (unfortunately at your child expense), but reality is staff is human.  They are trying to figure this out as much at you are.   
  • when you have come at this at all angles and theres nothing left,  give it up to a higher power, trust (cautiously) and let the professionals do what they are trained to do.  However,  Do NOT lose your voice along the way.
  • One of the hardest lessons for me, but so much truth behind it is  self care.  You have heard it a million times from family, friends, social workers.  I was always the one who rolled their eyes at it.  The last person I have time to think  about in times like this is "ME".  Seriously, take time for yourself.  Breath (just as you had to in the NICU). Regroup.  Once thing is certain. Stress DOES have a way of catching up with you, eventually.


Saturday, March 16, 2019

The struggle is real...

It's been too long since my last post, we continue to struggle... agressions worsening...

My son turned 17 in September  and it's been a roller coaster with his mood and agressions.  As I had mentioned before it was like a light switch went off he is an entirely different kid.

Something, back in 2017, something flipped and he is not my funny, quirky boy anymore.  He is anxious and edgy, the best way I can describe it is it is like an itch he just can't scratch. Hormones? maybe but theres something more we haven't figured out yet..

When he is clear I get things like "mommy I don't want to do this anymore"...Getting him the help he needs has be an exhausting effort. We have the best of the best on his team and no one can figure this out out.

We  had a 24 hour Emergency Department  (ED) stay in October 2017...and spent a month in an out of state psychiatric inpatient for Children with Developmental Disabilities and Autism, 40 minutes away.    When he was discharged he still was not stable. HE was more anxious now adding trauma from the hospital. stay/ injuries unexplained and side effects from medications

Six months later, in April of 2018 and after a  five day  stay in a local Emergency Department where we were placed in a room with no window's and next to screaming drunks and addicts, he got  two broken teeth (yes they broke my son's tooth while restraining him), unable to shower or leave the room, we were were finally placed after fat  another OUT of state pediatric psychiatric inpatient facility, this time an hour and a half away from my home.

It is not uncommon for ASD patients to stay up to two weeks or more n ED's waiting for an inpatient beds that can accomidate both the intellectual disability and the mental health issues.

At the moment Massachusetts does not have an inpatient facility to help kids on the autism spectrum with intellectual disabilities and co-morbid conditions.

From some research I have done, there are only 10 facilities, nationally that are equipped to handle children on spectrum and intellectual disabilities with co-morbid conditions.  None of them in Massachusetts at the moment and most only go up to age 18.  What happens when they age out??

If I had to compare our  two  inpatient stays our second inpatient stay in Rhode Island was Disney Land in comparison, to the first..  but it didn't come without challenges, ..lots of testing to rule out medical issues, more med trials & enduring its side effects along the way, injuries which were not limited to a bruised eye, elbow infection, cut forehead, viral illness, with lots of blood work and other testing.

Fast forward, three months at this facility.  My son was finally discharged and came home on five different medications. However, once again   insurance dictated that we were  ready to go home  and the hospital had to a let us go too soon once again.

arned NEW behaviors  First was biting.  Then..  property destruction and going after his peers.

Today, 9 months later, five medications, 35 lbs heavier (from medications) and still no relief in behaviors.  Medication side effects continue . None of his doctors are willing to make changes to his medication without another inpatient.

Yes, there is always going back  to the ED, but i'm not sure I have the stamina to do that again or to do that to him!! After all he is the one who has to endure staff who who are not trained with  do ASD, being restrained and possibly having more injuries.  ( I still have not been able to get him to a dentist for a cleaning and to repair his teeth because of his behaviors)

Sometimes, I feel like its too easy to forget that behind all these behaviors is still a scared boy with feelings who can't express himself.

For now I have opted to stay at home,  and do what is called "at home boarding/planned admission", some not all facilities will entertain this if you have beenthere before. However  the wait list is alot longer as those waiting in the ED are first to get beds.  We  have been on a wait list since August for the facility in Rhode Island ...and  we are also on a wait list at a facility in Maryland.

I'm not certain how long we can hold out but I'm certainly going to try my hardest to avoid the ED.

In the meantime, while I am in a living hell...I stand by what I have said numerous times knowledge is power, I continue to try to educate myself on what comes next.

Some Reading I have been doing:
A Brick Wall

Your can read about ED's stays in an interview I did with the Boston Globe here 

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.

Next on our list, on top of all this is guardianship.  My son will be 18 in September.  Stay tuned for a post on that.


Wednesday, August 23, 2017

The lost summer

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  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.

Then in June 2017, he seems to be targeting anyone in close range to him.  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).

His behaviors consist of,  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  have tried 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 quirky kid,  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.  He can no longer attend his special needs choir. There are  things he used to LOVE he has no interest anymore.

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 ...even that was a dead end.

 Challenging Behaviors Tool Kit. and TACAnow (Talk about Curing Autism) , who has parent mentors have  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

Going Toxin Free...


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.

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: