Sunday, December 28, 2014

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.

Friday, December 26, 2014

We found SOMETHING he loves!

I am always looking for activities for my boys to do, to keep them active, and things that typical non-autistic kids do, for social reasons and because it's good for them.  It sometimes is challenging because there are not a lot of coaches/teachers that "get" autism, and some of the quirks that go with it.  So you can understand my excitement when I find something that is a good fit.

I was at a birthday party for one of our friends this summer, and met a family that had their son with autism in a Kickboxing Class, and that he loved it!  So I felt intrigued, because I had had Jackson in JiuJitsu for about a year, and he didn't love it, he went, but whined and had a hard time following the class, and while he had improvement, he was never really going to be included in the rest of the classes that they had to offer or be included with the typical children, so there was no advancement happening.

I asked questions about this Special Needs Kickboxing Class at OC Kickboxing and Mixed Martial Arts gym in Irvine.  The class is from 4:00 to 4:45 on Friday afternoons.  It was a hit from the first class, first reason being is because he got to wear shorts and a t-shirt and not a heavy hot Gui.  Which was always half of the battle before.  Since he had obtained some skills from JiuJitsu, he was really ready for this class.

Coach Felipe, Coach Janice and Coach Catrina run a tight ship and give amazing instruction and are incredibly patient with our kiddos. There are also neuro typical peers that assist and help the special needs kids learn the combinations, and they all do the class together.  I can not say enough how wonderful the staff and volunteers and families that participate in this class, we feel welcome, comfortable, and happy to be there.  Jackson looks forward to it, and since we've been going a few months now, he has gotten stripes on his belt, so he is moving up, which was a HUGE boost to his confidence.  We practice the combinations at home so he stays fresh.

What is happening is that he is disciplined, and pays attention.  The way Coach Felipe runs the class is very quick, and he has a unique appropriate way of keeping the kids attention, and everyone loves it.

OC Kickboxing is in Irvine at 18241 W. McDurmott, Irvine, CA (949) 838-8338.  There are scholarships available for special needs due to a grant they recieved from Fullerton Cares and Autism Speaks.  If you are in need of an activity, or need something to build your childs confidence, or discipline, this is the place.  I love the kids who are helping out in the special needs class, they are friendly, respectful, disciplined and a pleasure to be around.  This is the activity where I feel that Jackson is gaining discipline, attention, and confidence in addition to learning to defend himself.

I can not recommend OC Kickboxing enough.  If you have a child with autism, check it out.  If you have a typical child absolutely give them a call, it will change you and your kids life.


My boys and their HUGE year.

We have one more holiday to go and we can kiss 2014 goodbye, and to tell you the truth since our autism diagnosis 6 years ago, this has by far been the best year and the biggest learning experience and the most growth for the whole family.

The year started out extremely rocky we had horrible tantrums and episodes at school with Franklin and it was so hard because we had him coming off medication and moving toward a more biomedical approach to treat his autism, and it was awful and hard and I wanted to give up almost everyday.  However, we plowed through together and he made amazing strides, and it was a victory.

This was also the year that we were able to give him a voice via an iPad and ProLoQuo2 Go.  We are a work in progress, and everyone at school is not properly trained in it, but we have given the boy a way to communicate with us and it has eliminated a large percentage of his behavior, and it was the biggest dose of gratitude that I could have asked for.  I am moving forward with my education on the device and plan to become a "mommy expert" on the device, via other mommies and classes that I'm finding in our area.

Jackson has started Kindergarten this year and my baby is becoming a big boy and it was hard for mommy to deal with.  I love babies, and part of me has struggled to not "baby" him, and let him grow up and catch up developmentally.  Jackson has made friends, and he has some buddies, and friend that he initiates play with and engages with and I absolutely love all the kids in our lives that we work on our social skills and are building relationships with.

This year after 3 years of therapy and desensitizing them, and working and blood sweat and tears, we conquered THE BEACH.  OMG.  I can't say it enough we can go to the beach, and stay, and no one cries - except me - Happy Tears.

All our work, and all the therapy, and all the sacrifice and the boys are changing, learning, maturing and my believing in them and myself as a parent is making things happen.

My boys have grown and changed and launched so far forward this year, and they work so hard, and mommy found a louder advocate voice, and I feel like we have put them on a path where 2015 is going to KICK ASS.  Our team is fabulous, and I am so happy and anxious to move forward and let this be year the of recovery and improvement.

We were sitting at families house yesterday with all our cousins and friends and I was also forced to look at how different and challenged my kids are.  While everyone was playing on the swings and doing games and things that 5,6, and 7 year olds do.  My 6 year old was locked on some paper cut outs of letters and numbers, and was completely in his own world and wanted nothing to do with the other kiddos.  I saw the difference, I saw his cousins looking at him like he was a little different.  But yet he was HAPPY, and while it hurt me as a mom to see my kids isolating themselves, no matter what I did to try to get them to engage, they were not having it.  Those are my struggles, and my hurts and lack of acceptance of autism.  But even while it hurt me a little, my kids rocked this holiday season and  I couldn't be more grateful.

I got to also see a lot of our autism families kids rocking it,  we saw some amazing things this year in our little OC community, and I'm thankful, and happy and hopeful, and taking all that into 2015 and looking forward to giving autism a run for it's money.

Merry Christmas and Happy New Year


Sunday, November 30, 2014

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.


Autism Adult Housing Tsumani

In November I attended the 5th Autism Speaks Town Hall Meeting on Adult Housing.  I was excited to go and left there feeling anxious, apprehensive, scared, and determined to help solve this tsunami that is about to hit communities all over the country if action isn’t taken soon or more like IMMEDIATELY.

Panelist Fran Solmor made the most personal and powerful statement to me because she actually a parent of a child and adult child with autism.

"I am here tonight because like all of you who are parents, I go to bed every night worrying about where our daughter will live when we are no longer around.  My greatest concern is this: will Sarah have a home and a community to live in?  Right now, the answer is that there are very few options.  Our job is to fix that problem."

I want to fix the problem too, but don't have the slightest clue as to where to begin, and what struck me at this event, was that none of the panelists had a viable plan or solution, and frankly that hurt my stomach, and made me cry.  It feels like diagnosis day all over again, Good Luck, see you in a year and they send you on your way.

Since my kids with autism, are still relatively young – 6 and 8 this month, housing was not on the forefront of my mind.  I’ve still been trying to maneuver my way through the IEP process and Regional Center labyrinth.  So I was frankly caught completely off guard when at this presentation most of the participants were saying there is a lack of housing.  No, not a lack of housing, there is basically for lack of a better word – NOTHING that will be there for my kids if action – serious action isn’t taken now.  That action needs to be taken legislatively, through the faith based communities, and the private sector as well trying to solve this problem.  While there was Senator Correa speaking at the event, I was left completely deflated with his lack of solution, and no words of HOW to make it HAPPEN.  And when I say IT I mean, actually housing come to fruition for the tidal wave of children reaching adulthood with autism that is coming to our state. 

One action item that came out of the meeting was the December 7th Walk Now of Autism Speaks event at Anaheim Stadium, where Autism Votes will have petitions to sign to start the legislative process going.  There will be at least 5000 people that can sign these petitions and help move the process and get this in front of the legislature who HOPEFULLY will have our kids interests at heart.

I never thought I would say there was anything scarier in my life than my kids being diagnosed with autism, because there is not a “manual” on how to treat autism, so you basically follow “advice” and fly with whatever treatments, therapies, and medical interventions work for your kids. However, this new knowledge of how severely impacted our kids will be if all of us as an autism community don’t ban together and make a difference here, that is the scariest thing ever.  I have not slept a good night since, because I feel like I have to make a difference, and I can’t stop the worry of “What will happen to my kids, when I’m no longer here?”  So the only thing I can do to help stop that worry is take action.  I can not trust that our dysfunctional frozen government is going to be able to deal with this.  I can’t put my kids will being completely in that basket that I frankly don’t trust.  

I have always thought I would be there to take care of my kids, because they NEED me, and one of my kids is so severely impacted by autism, I have just cluelessly thought - "I can never die" - joking but not really joking.  And now I feel that thought is going to haunt me.

As a mommy, I have to now add to my already overwhelming plate of AUTISM to make a solution.  I don’t think the government will ever do anything to care for these kids adequately, so as a community we have to come together and think, plan and do something to make a community for our children and help avoid the tsunami of adults that are about to hit the system.

I am open and looking for any ideas anyone has here. 


Tuesday, October 7, 2014

Unspeakable Grit

Being the mom of a non-verbal child is a test of true grit.  I know several of us and our life takes on so many additional roles, including clairvoyant for our child, because most of the time we are trying to just figure out what they are communicating.

My oldest son has severe autism, is non verbal, and has been working with a communication device to help him get his voice and it has been a slow road but his frustration has been cut down a lot.

However, when I'm not with him, he is still in the big bad world alone with very minimal communication skills.  So I trust everyday that what I do and who he is with is aware of that huge safety factor.  Sometimes I feel confident in the people around him at school, and sometimes I'm stunned because it doesn't seem like they have ever heard of autism before.

Behavior is Language
Over the last several months his eloping (running away) has kicked up a notch and 2 times in the last week, one I witnessed myself, and one was told to me by a school aide, that he got away from his group and out of the building.  Thankfully, he was not able to get very far and was caught by adults both times.  We also have a documented case of him eloping out of his classroom and out of the building of school with 3 adults running and chasing him.  The part about all of this is none of the adults chasing him can ask him "why" did you run, "what" do you need, "what" can we help you with.  He can not communicate that, and that is where the grit comes in.  I have to buckle down now and make sure that my dude is under impeccable care.  Because I can't think of what would happen if he got away, it is unspeakable and unthinkable, and brings a flow of tears to my face that I can barely control.

So I have to go now, and ask, and beg, for my childs safety that he get a personal 1 on 1 aide to be with him all the time.  What can happen is unspeakable.  His school was built in the era, of love, peace, and Bobby Sherman and there is no fence and the campus is completely open, which was probably a very poor choice of locations when the district was choosing the location for the Special Education Children.  So I have to prepare myself for what I expect to be a battle, because really it is always about money, and someone is going to pull the I don't have enough money to provide him a full time aide.  Well those EXCUSES are no longer acceptable for me. The school districts have plenty of money, they just have to choose not to waste and abuse the funds they have, because that is the problem (and a whole completely different blog post). 

So begging for my child's safety is what is going to happen this week, and if we don't get what is going to keep him safe and a productive non disruptive student to his classmates, I will have to find a special education advocate, and fight the school and the district and ultimately win.  Because the unspeakable game here is that the districts want to give you as little as possible, hoping that you won't fight, and putting so many hoops in front of you that they hope you give up.  I do believe I have a slam dunk case, and will take it as far as it needs to go.  He's my kid there is no limit to the lengths that I will go to help him, I will turn over every rock and move mountains to make sure we get him where and what he needs to be a successful student.