They Said He was Unteachable

I relive that day in our IEP meeting with my son's "team", as a 1st grader I was told by several, he was unteachable, unengaged, and unwilling to cooperate, and I should consider taking him out of school.  He was 6/7 years old then, and I was riddled with anger and heartbreak.  These were EDUCATORS, and they were giving up on a little boy with autism, because he couldn't talk.  Because he didn't fit in the box of the neurotypical child that they determined worthy, nor did he fit in the much smaller box of autism that they deem acceptable to teach in their ONE way that they offer.

You suffer these blows from educators, medical professionals, and many in the community often as a parent to children with special needs, especially parent of children that have no physical voice or functional communication.  They expect you to accept their mediocrity, and one way style of teaching.  They expect you to take their lies and laziness as "we're doing everything we can".   They also expect you to accept them not treating your child with dignity and respect because they have no voice, to tell you that the professionals, teacher and therapists are killing their souls and not presuming competence.

I am going to say this that there are A LOT of AMAZING SPECIAL EDUCATION PROFESSIONALS, and we have been honored to have them.  I am not ignorant to that fact at all.  We have been blessed with some teachers that have brought my son back from the darkest place, after years of being warehoused, marginalized, neglected to the point of being put in the ICU.  

I have been tired of the overplayed excuses from teachers and therapists with all the things he CAN'T do.  They never gave him a chance, offering him a whole 15 minutes of speech, including walking time.  But I digress.

As a mom, you have the PhD on your kid.  You do.  I do, I barely made it out of high school, but NO ONE knows my kids better than me, no one knows when he crinkles his nose what is about to come, when he cocks his head to the left he's happy.  He hates the back of his head being touched, but he loves his forehead being rubbed.  You just know your kid, because they are a part of you.  It did take me awhile to get my Autism Mom Wings and fly with them, but once I did, the world became so much more open and available to him.  

I have followed moms who have walked this treacherous, exhausting, exhilarating, and overwhelming path before me, and if I see something working for their child, I bother them, I ask them, "what did you do?", "can you help me?", "where can I find that?"  "What is my next step?"  The kids, the kids have always been my evidence, and all I need really to be willing to try new supplements, diets, methods, treatments.  If it's working on kids in my circle and I can do some research and see it's working for others, we have nothing to lose to try something.

We have embarked on this new journey for about a year, and I finally feel like I have my wings and I can sort of fly solo with it.  We are doing a program called Rapid Prompting Method which is used to teach academics, and communication is also taught in the process. Despite behaviors, the academic focus of every RPM lesson is designed to activate the reasoning part of the brain so that the student becomes distracted by and engaged in learning.

RPM is distinct from other methods as it is based upon how the brain works. The aim is to bring the student to maximum learning through the open learning channel and to elicit the best (not simply to test) out of the child to enable maximum output in that given time. As a student's cognitive and motor proficiency increases, the sophistication of a student's response also improves.

RPM uses prompting to initiate a student's independent response, without physical support. In addition to teaching letter-chart pointing, RPM also utilizes stencils and other drawing exercises to lead to independent handwriting.

In a nutshell, I just have to say to all of those at those IEP meetings who said, he was not teachable -  YOU WASTED A CRAP TON OF MONEY ON YOUR DEGREES.  YOU ARE WRONG, and YOU OWE HIM AN APOLOGY!   This kid has chops, he knows stuff, he has absorbed more than you can even fathom.  

For example for fun tonight we did a few lessons - here are some of the questions, and his answers.

What part of the body does a rattle snake shake to make noise?  -  a T-A-I-L (so he knows the answer and how to spell it)

If you are watching a sunset, are you facing East, West, North or South?  W-E-S-T  

Name the Tallest Mountain on Earth - Everest or Whitney?  E-V-E-R-E-S-T 

How Many Quarters make $.75 -   3

He knows stuff, a lot of stuff, different stuff, how to spell, he has opinions, I was told his functional communication would be just communicating his needs for food and toys.  Boy did they underestimate him.

UNTEACHABLE - that's what they said.   Well this journey we are on is now about to soar like a rocket ship.  I hope you follow along in our journey.  This is the part where I get to say It's Not Game Over because of Autism, It's GAME ON!!!  

Back to School ---- With Hope

I am usually the mom doing the happy dance when kids go back to school.  As an Autism mom, summer is sometimes really really really long.  After many years of work, finding my kids "thing", and doing our best to set the kids up for success, I was a little sad to see this summer come to an end.

Being a special needs parent and starting a new school year is incredibly stressful, the uncertainty, the new teacher, new room, new kids, new schedule.   The district I live in is incredibly negligent and irresponsible where Special Education population is concerned, the anxiety goes on all year.  You never know what is going to happen at school, and frankly the schools are no longer about education.  I haven't figured out what the hell they're doing but they are not interested in educating special needs kids, they are more like a mediocre babysitter.  So we prep, prime the kid, and hope and pray for the best.  The jury is still out on the teacher and his aide, I'll give them time to get their feet wet with the kids, if I don't see progress by back to school night, then my charming but firm side will come out.

I make a very valiant effort to start the school with giving the administration, principal, and special education departments the benefit of the doubt, and try to swallow that they "have our kids best interests at heart".  I'm going to really try this year, I'm going to try to not yell, scream, and freak out when my kid is being marginalized, forgotten, and excluded from things because their classroom is at the back of the school, not encouraging inclusion.  When they leave a kid on a playground that can't talk, I won't let them have it.   When a kid gets out of school that can't talk, I won't call them incompetent.  When a kid goes home with a bruise, scrape, or bite mark and we are told we are not entitled to an incident, or "he fell".  None of this is over dramatic imagination, this stuff happens to special education children, especially non verbal ones, EVERY SINGLE DAY all over the country.

But this year I'm not screaming at people after the fact.  But I'm going to try and plead to their common sense and decency, because the reactionary mom is just as bad as a reactionary school I am usually the mom doing the happy dance when kids go back to school.  As an Autism mom, summer is sometimes really really really long.  After many years of work, finding my kids "thing", and doing our best to set the kids up for success, I was a little sad to see this summer come to an end.

But this year I'm not screaming at people after the fact.  But I'm going to try and plead to Administrators of school districts everywhere.

Please to Special Education Teachers,  and Staff.  

These are our children.  We love them, we worship them, they are tiny humans just like the neurotypical kids.  Please protect them, follow their IEP, work with the parents to make the kid as successful as you can.  Please assume competence and capability.  This is how you do it right.  

How you don't do it right, is lie to parents, deny or withhold services or knowledge of services to a kid that clearly needs them.  Treating our kids like they don't matter and that any hurt that happens isn't an enormous deal.  And Never Never Never tell a parent their child is unteachable.

We know who is doing it right, and we love who is doing it right.  And so do our kids, and we know who isn't doing it right.

Let's do it right together, forget what the Administrators want you to do, they're really just overpaid buffoons, that couldn't walk 5 feet in a teachers shoes.  Kick their rules and their control to the curb, our kids matter too.  You can do it, the parents will stand with you if we know you have our kids backs.  We can do this, we really can - I hope.

The New Year - Same Me - but 50.

HAPPY NEW YEAR!

Lots of lessons learned in 2017, lots of tears shed, tons of laughter, many memories made.  Just like every single year of my last 50.

So this year this mom turns 50.  It's going to be at times AMAZEBALLS, it's going to be at times sad, it's going to be at times fun, it's going to be at times filled with questions, it's going to be at times filled with badassery, it's going to be at times filled with amazement.  I always want it to be filled with love, laughs and experiences that are unforgettable.

There are so many things about my life, family and mind that make me so different from the typical mommy blogger, and I finally understand that all of that is okay.  You can go read the same 15 blogs that say all the same stuff from all the same places.  All of those blogs are great, and are great advertisements for the local area.  I am able to do a lot of their recommendations, but they aren't really autism friendly places for the most part, so I have to consider what my kids can and can't do and what places truly welcome them, and all of that is okay.

I will have a post at least 2 times a month of autism friendly places that are safe and welcoming to our kiddos.

I will have a posts this year for what us caretaker moms need to CARE FOR OURSELVES.   We matter too.  It is important to care for the caretaker.  That's been a big lesson I've learned the last two years.  Of course my husband and kids are the most important and I give them almost all I have all the time, but there are times, days, minutes I need to take a step back, take a deep breath, and answer the screams of my body and mind.  Because there is no one that will care for the caretakers.  I had a surgery last week and seriously it was a shit show.  While most moms can at least get their children to bring them an apple out of the bowl or a bottle of water - with autism - that is a hit or miss.  I had no one here during the day.  There were 2 days of incredible pain, but it ended up being okay.  My house just looked like I lost a serious game of Jumanji.

I will have posts of keeping my body fit and healthy.  This will be my 8th year cancer free, and I'm ready to kick things up a notch.  Don't go crazy, I'm not going to go vegan or anything but I'm going to go less toxins, less processed, less junk, more whole, more outside, more care, more steps, and more healthy.  If I can't care for this body, I won't be able to care for the kids later.  I have really taken a loving to essential oils, I will share me experience strength and hope for what benefits they are bringing my boys and family.

We were fortunate enough to take some amazing trips on our Harley's this year, and I want to share that for moms.  It empowered me, it focused me, it helped my mind and my soul heal some deep wounds.  I read a sign somewhere "4 Wheels move the body, 2 wheels move the soul".  And I swear nothing couldn't be more true.  I think it was the only thing that kept me from punching people in the head this last year.

So while it will be a new different blog this year, it will be an experience, and I hope you're on board for the ride we're gonna take with it.


REBECCA

The Phone Call

On September 1st, I dropped my kid off at school and was elated, it was the 4th day of the new school year, and I was thrilled to have some time for myself, after a very long summer with my kids who have autism.  I was running the Disneyland Marathon that weekend so I took a quick trip to Anaheim to pick up my race packet.  I was 30 miles from my kids and their school.  I was in the basement of the Disneyland Hotel when I my cell phone rang,  it was my son's aide, very upset, he had been in an accident at school, a file cabinet had fallen down on his head and they were calling an ambulance for
him.

I was nauseous,  I am never that far from my kids, I couldn't get a straight story from anyone on what had happened.  I had my father in law en route to the school, and I had called another parent in the class who we were close with that could get to school before I could to see what had actually happened.

I got a call back from my friend who I asked to go see what happened at school because I was still 30 minutes away.  She called me back hysterical and devastated, because it was her child who caused the accident.  Well actually know it wasn't her child that caused the accident, it was every adult that works in school administration that caused this to happen.   Every arrogant school administrator that thinks they know better than anyone that is a parent.  (I have anger issues where this is involved).

I finally made it to the hospital, the longest ride of my life.  My son was lying on a gurney visually shaken up with a large mark on his forehead.  He is the most vulnerable kid in our school.  He is obviously severely autistic, non verbal, so there is no way for the doctors to assess him.  It's complete horse shit as far as I'm concerned, once you say your kid is non-verbal, and severe, you see the level of care immediately change.  The medical staff thinks they can do the minimal amount of tests and scans etc, "because of his condition there is no way to get an accurate mapping of any cognitive abilities".  It's absolutely maddening.

After 2 nights in ICU and 2 brain CT scans, it was determined that he suffered a grade 2 concussion.  Now I knew very little about the long term effects of concussions and traumatic brain injuries.  I learned that concussion are devastating, life changing, and very serious.  I thought they were things that happened to athletes, not special needs kids you drop off at school.  I thought they happened to adults.  You are more likely to get your 2nd concussion within 6 months of your first one - because once that "egg is cracked" it will take half the bump on the head to do twice the damage. 

In the 3 months since the accident, life has gone wonky.  We have worked so aggressively hard at working on his autism and helping him get out of the deep hole of autism where he was aggressive and miserable most of the time.  We did years of therapies, diets, medications, supplements, treatments, and spent tens of thousands of dollars.  We had even sued the school district because his previous school he was badly mistreated, neglected, and unsafe and was allowed to get out of the building and to the street multiple times.

After 1 year in his new school, he was doing so amazing.  He was starting to actually achieve goals that had been set as a kindergartner - we had no tantrums for almost a year, he was making communication progress that was thrilling to all of us.  He was in a great place and we were full of hope and comforted that he was with people that wanted him to do well, and BELIEVED in him.  It was great. 

We have had may doctor appointments and are trying to manage the concussion, injury, trauma, and autism and I just see the backslide happening, and there is nothing that I can see that we aren't doing.  All of the work that we have done for years has been lost.  We are back to no sleeping, no eating, aggressive, scattered, and he clearly suffers from debilitating headaches, and sensory sensitivities.  So his life that was already 1000 times more challenging than anyone's on his best day is now painfully more so.  I have this child that is not the same child I dropped off at school on September 1st, I cry almost everyday as I see his struggle, and pain and feel so powerless over how to help my child.  I remain steadfast in my resolve to do what is best for him, and get him to a better, healthy more comfortable place.

This has changed our family and me, our circle has gotten smaller, some people have been amazing friends and it's just warmed and renewed my hope in humanity, and some people who I thought were our friends have pretty much given my child the finger, because my concern for my childs safety is considered offensive.  Which everyone is entitled to their opinion - and you know what they say about opinions......

I am thankful that my child wasn't killed or more seriously injured.  I know that those were possibilities of what could have happened.  This really could have been a tragic event.  I am learning from it, I am moving forward with demanding that the schools are safe for all kids, this should NEVER have been able to happen.  The attitude of the administration at our district has been disgusting at best. 

I am praying for solutions, and help that my child recover from this traumatic brain injury and that we get him back to a place where we can start to move forward.  I'm open to anything that you've got. 

Happy Thanksgiving

Rebecca

Super Sensational Successful Summer

We did it!  Autism beat the summer.  We nailed it, we worked together as a family, as therapists, as community, and had a few bad moments, but no bad days. 

I am so beyond proud of my kids and how hard they work and how enormously awesome they are.  I remember summers and how I would dread and be anxiety filled about the lack of structure and fear of the unknown and how autism would kick my ass.

This summer was sensational, we had so many opportunities afforded to us.  The kids attended Extended School Year, they were able to participate in Special Camp for Special Kids, Surfers Healing, ASkate, and many many Angel baseball games, Disneyland trips, Knotts Berry Farm and many many many hours in the pool.

We have conquered the major behaviors, we have given Franklin a means to communicate, we have found the things that make the boys happy.  We have found their joy.  And no matter what the joy is, we run with it, and do our best to keep their lives as busy and engaged as possible.

I did not have a lot of sleep, because as I had to keep the boys busy, we were busy.  The husband and I are opening a business, and I 3 half marathons in the next 5 months going on that I need to train for, so go go go has been the mantra here.

Back in the spring my husband purchased a Harley Davidson, and we have found a fun and passion that we haven't had in a long time.  While I don't ride myself, I'm just a passenger, I love to look at the world from the back of the bike and just be close to my man. We have changed "date night" to date days, and take long rides through beautiful parts of our area, and have met some really fascinating people who share our love for Harley Davidson and riding.  So while I took some coercing to get the bike, I'm so glad we did.

With 4 days left of our summer vacation, I'm a little emotional that I have a 1st grader, I feel like I just took that pregnancy test!  I am more confident in my ability as a special needs parent, and have become a good advocate for my kids.  I have resources and wonderful team of parents around me that help me and I'm able to help. 

This has been just an amazing summer, and I'm sorry to see it end, but so ready for the kids to be back in school.  I hope you all have had just as blessed of a time as we have.

3 Date Weekend

Sometimes with autism, our family doesn't always get to spend our time away from the house together as a family unit, so occasionally we divide and conquer activities accordingly.  

So this weekend, there was much football on to be watched, college and professional, and the husband wanted to partake in that.

Recently on Saturdays my little Jackson and I go to church with another family and usually dinner after church.  Jackson is enjoying spending time with his buddy from school, and it is a great opportunity for social interaction with other peers, but especially that he is learning about God and stories from the bible.  During the week he'll throw out little passages to me, for example "Jesus is God in human form".   So yes, he is getting something out of it, and I have been loving the messages especially what we got this week.  All about forgiveness, and starting over, and how to succeed in your faith by having a mentor, a pal, and a newcomer, to grow roots in your faith.  I always enjoy my "date" with my little guy even if he wants to be with his buddy and ride with him in his car!  My baby is growing up, and I couldn't be more happy for him

This morning the husband and I had a babysitter, and had planned to take the Harley out for a ride, but for us Orange County folk temperatures in the 40s and 50s are too cold for me to be out on a motorcycle early in the morning.  Call me wimpy or not Harley worthy, I don't care, I'm almost 50 and I know what makes me comfortable.  The husband and I arrange date days every week.  Need it or not, we need a respite from autism.  Even when we don't want to go out, or be with each other, we still go out for a few hours to recharge the batteries, it's extremely precious time for us.

We headed up the coast to an old established restaurant in Newport Beach for brunch.  We went to Newport Landing and it was a great choice.  I know you're thinking, buffet food, well it was a brunch and the selections were fantastic, and a wide variety of food, and everything from the soup, salads, sushi, eggs, prime rib, were delicious.  I was pleasantly surprised and am looking forward to going again.  They have a $3, $4 and $5 happy hour during the week, that makes the price right for us so we will hit that up for sure.  If you haven't been in decades, I suggest you go back, if you have never tried, you MUST.  The view and the food, and the company with the husband in the restaurant were all so pleasant it was a totally enjoyable morning.

I couldn't miss an opportunity with my oldest son Franklin who hadn't been out of the house in a few days, I took him to Knotts Berry Farm.  Our season passes expire this week so I was squeezing a little fun in this afternoon.  Knott's is normally pretty mellow and it has a lot of thrill rides, that he just loves.  Today was extremely crowded, but we were still able to get on 3 of his favorite rides, and a snack before heading home for dinner.  Knott's is also having a New Years Eve party until 1am this Wednesday if you're looking for something fun to do.

We have one more week left of Christmas vacation, and I'll keep the week full for the boys with therapy and play dates.  I am prepping for a 21 Day Sugar Detox that I'm starting with a friend on January 5th.  I'm going to have to use the blog for accountability, since sugar has become a nightmare of a problem for me, and I worked too hard to get fit and lose weight to give it all up, so I'm going to try this route, and hope I make it.

Autism had a Happy Thanksgiving

This year we celebrated Thanksgiving with my husbands family at my in-laws house.  All of his family for the most part have been incredibly kind and accommodating to my kids special needs.

We arrived with our truckload of toys, games, iPads, food, snacks, changes of clothes, and ear muffs for our couple of hour visit.  We look like we are unpacking a clown care with all of the "stuff" needed by my kids.  Having all of the "stuff" makes our success ratio much higher, even if they don't use any of it, I like to have familiar things available to them when anxiety or sensory overload kicks in.

The food, company, love and laughter were wonderful.  Besides my son pooping in the corner of the spare bedroom, the day was a total success.  Autism likes to do that to me, make sure that I have episodes of embarrassment, humility, or mortification just to keep me grounded and in my place, making sure I don't get too cocky.  Autism tries to keep me down to earth, the bastard.

What I totally loved about this holiday was that the 4 of us arrived together and left together.  We always bring 2 cars places just in case autism decides it is going to bitch slap us around.  Didn't happen this time.  For the first time in a long time all of us got to participate in all of the festivities of the holiday.   That is what I am thankful for.

Rebecca

Rancho Las Palmas: Autism and a Special Vacation

This mommy needed a vacation in a crazy way.  It has been a long summer.  My kids have autism, so I was trying to find a place that could help me accommodate some of our needs, while being close to home, fun and family friendly.

After perusing the web, some blogs, and looking at #ocmomtravel I called up Rancho Las Palmas in Rancho Mirage, CA.  I saw on the web there was a Dive into Summer Special Rate. I  talked to their reservation line and told them about my kids and the vacation I wanted to take, and some of the special needs that my kids had, and I was amazed at the help and suggestions and willingness to make our stay enjoyable, so I booked us 4 days at the resort.  The concierge Eric Santos was very helpful in getting us set up and making us have a comfortable and relaxing vacation.

We arrived on Sunday afternoon and it was a very hot 112 degrees!  But have no fear SPLASHTOPIA was waiting for my kids and us so we DOVE into the pool and the water slide and it was like a HAPPY FACTORY for my water babies.


Our room was amazing, the location and the view were perfect for what we needed.  The decor was gorgeous, and my kids really couldn’t disturb other guests, which is a huge worry when I’m out.  One of my kids favorite things was the Fun Zone Arcade that was set up and open every day.  It broke up some of the pool time, and was a great way to keep the kids busy and out of the heat.  It was fun and they had so many different games and activities for the children, I was surprised, I’ve never seen that before in a desert resort.

We ventured out in the Palm Springs Area and had a date shake at Date Shield Farm, which was AMAZING, and reminded me of the date shakes at the Shake Shack in Newport Beach before it became a Ruby’s and before Crystal Cove was even a development.

My husband and youngest son took a trip to the Palm Springs Ariel Tramway one day and did a couple of mile hike, and it was a blast, as well as a great way to beat the heat on the desert floor, it was about 25 degrees cooler up at the top of the mountain.

We found some things in the desert to do with autism, and the hotel made us feel more than at home.  If you are thinking of vacationing in the desert area with your family and or your special needs child, I absolutely 150% percent recommend Rancho Las Palmas.  The staff on duty in the pool area were made aware of my kids and some of their personality traits and how to help them or work with them.  They were so kind and understanding and helpful it was beyond my expectations.
  

We had to cut our trip short by a day because the hustle and bustle of resort life was a little more than one of my kids could handle, and we left in a big hurry, and again the staff came to help and went above and beyond the call of duty and made our stay and our quick retreat out of there a great experience.  I can hardly wait to get back and experience the spa, and some of the other amazing features.