It's the Little Things.......

 I have heard the statement in any different ways from many different people.  "Every time I think I have it bad, I think of you and get really grateful."    Seriously?!  WTF, Why didn't just grow a pair of balls and say what you really think.   You really think my life is a suck fest of epic proportions and you are really glad you're not me.  Or at least that's what I take away from that annoying as hell statement.

Do people really believe a special needs parent is enough of a peon where it's just okay to tell them right to their face you think the life they have to live is bad?  Where has the support and tolerance gone in our community?  One can not possibly believe, or be that inept or self centered to think that  telling someone that their life is so messed up that you're glad it didn't happen to them is a supportive thing to say.

I know intellectually that most people don't even fathom that this might be hurtful or something that would make a special needs parent sad.    I had another woman this week ask me if I felt cheated.  Totally fair question,  and my answer was a resounding "no, I think my kids were cheated."  But this life that was designed by autism didn't cheat me because it is my normal.   It's my baseline, both my kids have autism I don't have anything to compare it to.  Do I think sometimes I was robbed of motherhood?  Well I am still a mom, right?!  So no I wasn't cheated of motherhood, I think that I a dream and expectation that I had of motherhood was changed, but no cheated, not at all.  Jealous sometimes of how easy mothers of typical kids have it, but no I don't feel cheated.  Left out, yes I sometimes feel left out because there are so few of our friends that are tolerant of our children, and most of our friends kids now look at our kids like they have 2 heads.   But cheated no, I get to care for my kids on a deeper level than most can or do, and it will be for the rest of my life.  So no cheated is not the word I would use to say how I feel.

I will tell you something about my life that is so amazing and awesome, that a lot of typical parents take for granted and never appreciate.  It's the little things..... Like when I said "thanks" to my 5 year old and he replied, "you're welcome" without the prompting a speech therapist, a behaviorist, or me.  On his own he spoke a reciprocal statement and I think I was over the moon about that for 2 weeks.  When my 7 year old was watching TV with me last week, and laughed at the appropriate place and at something funny on Nickelodeon - after I picked my chin up off of the floor, because I realized the huge amount of cognition just opened up and shell of autism that was just cracked, I smiled and cried happy tears for days and grew a big sack of hope for him.  I don't see parents of "typical" kids in awe of their kids for the little things. 

I have to look for gratitude most days, and do my best to work at finding the joy in my kids and the awesomeness that truly comes with their hard work and therapy, and I'm probably about 85% successful at doing that.  Let's face it, some days are hard, and I forget to look for the good, but I'm getting so much better at it   So to have people repeatedly tell me that they are grateful they aren't me, I will try to grin and bear the words that aren't meant to be hurtful but re-injure a broken heart.

What They Can Do...........

"There needs to be a lot more emphasis on what a child can do instead of what he cannot do." - Temple Grandin



It took me a few years to let this sink into my thick skull and to practice it in my life and the lives of my children.  I was so devastated and driven when they were diagnosed with autism, I couldn't see past the nose on my face most of the time.  I was consumed with how much they couldn't or wouldn't or didn't do like "typical" kids, I was blinded to see the amazing accomplishments that they accomplish everyday.

My kids have been in some kind of therapy or school for about 40 hours a week for years.  Sometimes down to 25 hours a week, but basically they are incredibly hard working and work so hard to learn the simplest tasks that most families take for granted.  For example when I hear a "typical" mom say that it took a WHOLE week to potty train their kids, I basically want to sock them in the face.  

We've been working on potty training for about 5 YEARS!  But in the last couple months we have reached such amazing milestones with it, I'm ecstatic.  I will leave out that I have to basically clean up and bleach an entire bathroom after he poops in it, and tries to clean himself......... He isn't in a diaper anymore, and that was the CAN DO, I have been working for.

We have been rigorously working at desensitizing my kids to the beach for about 4 years, and every spring and summer for the last 4 years, I would watch my friends go to the beach with their kids and frolic in the ocean and spend a day making castles and I was envious and jealous and so sad because I thought we would never see that day.  My kids would panic and tantrum when I would get south enough on the freeway that they could see the ocean, the panic and tantrums would start.  We couldn't drive on Pacific Coast Highway, for the love of God, we live in Orange County California, how are you expected to never go on PCH?????  Well this summer it happened, after hours of work, therapy, blood, sweat, tantrums and tears, my kids are going to the beach, and LOVING IT!!!  THEY CAN DO THIS!!! THEY CAN DO THIS!!!

We have worked for years many hours every week on so many different things, and it's so much easier for me to feel sorry for myself and them and look at the differences and the "can't" and the "don't" and the "won't" - just because I think to a certain degree it's expected from moms of children with special needs.  Well I'm sort of over the victim mentality, it hurts my head, my body and my soul.

My kids can do some amazing things, that to most people and children might not seem spectacular, but after the amount of work my kids put into something to accomplish it, I'm in awe of the incredible things they can do.  

My younger son READS every sign and book and truck, and paper that comes in front of his face, before he is in Kindergarten, 

My older son, can climb a mountain, and swim to Catalina, and he smiles and laughs and loves us!

My younger son, wants to hug and say hi to everyone that he sees, and some people find that annoying, and some kids are rude to him because of it, and he is starting to get hurt feelings when kids aren't nice to him.  Even though it's not my favorite thing, it's a huge accomplishment for a child with autism, to recognize his feelings, and to know that he isn't being treated like he should be.

My older son loves to be outdoors and will hike, swim, walk and play happily for the most part, without the typical 7 year old whining that goes along with being alone.  He will entertain himself and enjoy nature without a toys and the distractions that so many other kids need to just be at peace.  

My older son, while he can not speak, he is learning to communicate through a device, that just is opening a world to us and to him, we did not think was possible, and it is changing all of our lives.

We are building a life for our boys on this foundation that is autism, and all of the therapy, school, work and exposure to things are what is strengthening them as people, and helping their autism.  I know their autism is never going to go away, but I have hope and know that there is nowhere to go but up and they are always going to be a work in progress.  We have no room to be complacent, and lazy, to keep them at a place where they are always moving forward and learning, we need to always be working, and always be looking at their strengths, and building on what they CAN do and making a conscious effort to NOT focus on what they CAN'T do.  It's friggin depressing, if I spend everyday looking at all the can't do's and don't do's and the won't do's  in our lives, I'd never muster the energy to even get out of bed.  So a change of thinking is what is happening to me now.  Acceptance is the key, autism is the lock and I have accepted the autism and all the comes with it, good and bad, and for today at least I'm looking at how far we have come, and excited about the successes we are having lately.

We CAN go to the beach today, so we are - PEACE OUT - xoxoxo

Autism - the first time

I waited my entire life for this baby. The minute he was born he took my breath away. I was hooked the second we locked eyes.
I knew at that moment I would walk through fire for him.

He was a joy as a newborn. He rarely cried he took to breastfeeding like a champ He was not the best sleeper at night but I really didn’t mind that much.

He began to hit his developmental milestones pretty much on track or at least what I thought was on track. Babbling at 3 – 4 months, rolling over, sitting up, crawling, standing, cruising, walking, all by his 1st birthday.

When he was 4 – 5 months old he had an aversion to certain loud noises and he would either cry or open and close his hands very fast. We thought it was cute.

He was cuddly and affectionate with David and I . As he got a little older 8 – 9 months I went to a couple of different play groups and began to notice subtle differences between Franklin and other kids. He wasn’t pointing for things, he wasn’t clapping, he wasn’t waving “bye-bye”.

He would not engage other kids, he wouldn’t respond to their play or participate in parallel play, he would play alone and really not even notice that other kids were present.

I had read a book when I was pregnant with him about a child that was diagnosed with Autism after a seizure. I remember some of the characteristics were, and the first time Franklin flapped his arms, my heart sank. I did think it might have been a fluke because he was so cuddly and affectionate with me and he engaged with me and would play with me. His social skills with other people were non existent.

The more I went to parks and the more he was around other kids his age the more I noticed how many difference and deficits he had compared to other babies his age.

I couldn’t deny that there was something different and delayed about how he was developing and behaving.
At 16 months he seemed to not be talking or making any progress to start talking there were no words, sounds or approximations. It also seem like there was nothing I could do to get through to teach him to do anything. The helplessness was getting palpable.

I expressed my concerns to some family members and they referred me to an Occupational Therapist that they had worked when a child of theirs had a head injury years earlier. I went to see this therapist with Franklin and this man observed him for an hour and told me that Franklin had issues processing sensory input. Basically his brain was wired incorrectly but by massaging Franklins back and hands and chanting to him I could re-route the messages to the proper area of the brain. He tried to sell me some MonAvie for him to drink. He also told me not to let anyone tell me that Franklin had Autism because that was a diagnosis that was thrown on children to frequently because doctors and therapists were too lazy.

WOW! I left there LESS than relieved and I was sure he was a nut job and was shocked that people I respected thought that this guy was reputable.
As a new mom I was at a loss with what to do. I finally went to my pediatrician and told him all of my concerns about Franklin. I took a favorite Elmo toy with us to that appointment so that the doctor could see some of Franklins s behaviors and actions playing. My Pediatrician observed and ordered an evaluation through the Regional Center for a speech delay.  The Regional Center came to our home and did an intake assessment to see if Franklin presented enough of a delay to qualify for an official evaluation. Which he did.

We were then sent to a place called Newport Speech and Language. This evaluation was a disaster. Two therapists came in a conference room as Franklin was playing with the mini-blinds and climbing on furniture. They were irritated the fact that I couldn’t get him to comply with the requests they were making of him. They in my humble opinion were unfit to be therapists to toddlers.

I had also heard that because kids can’t talk sometimes it is because they can not hear, so we went for hearing tests, which he would not comply with and he had to have a sedated hearing test which he passed. I knew as a mom that he could hear because if his favorite show came on the TV in another room he would hear it and come running. It is something that I find amusing with the medical community that they rarely listen – truly listen – to what the parents say about their child. They could save a lot of time and money.

It was obvious that Franklin had a lot of developmental delays in addition to a “speech” delay. But after their recommendation of 1 hour a week of speech therapy we began to attend Rainbow Kids 1 time a week for an hour. After a few months of going there with zero progress the Speech Pathologist there said that he was making a recommendation for an emergency evaluation. Franklin had a lot more going on than “not talking”.
This therapist took a couple of hours interviewing me and observing and assessing Franklin and his abilities. I will always thank God for this angel because he was the one that got Franklin the help that he needed.

After his report was sent to Regional Center there was an order for 12 hours a week of in home ABA therapy. After the supervisor spent a couple of days in our home they ordered 20 hours a week of therapy for my (at the time) 2-year-old.

I had decided to go to a Neurologist to see if there was some stone that I was leaving unturned. Because even after a few months of intense therapy in our home very little progress was being made with Franklin and I wanted to see if there was something else we could do to help him. With this visit came what I already knew in my heart – the diagnosis of Autism. My heart cracked a little hearing the words from someone else.
Even though intellectually I knew he was the same funny sweet angel that we had always known. I was hurt that he was going to have such challenges to overcome in his childhood. This is a battle I have to fight for him but he lives on the battleground I just drive the tank that helps him off of the front lines of the fight of his life.

The progress in most areas is slow. He is still non-verbal but has his way of communicating, and we have recently acquired an iPad and ProLoQuo2 Go for him to communicate, if we could just teach the school how to use and to teach him, I'd be doing cartwheels all over the place!

Both of my children have autism , and autism or not, I will never stop loving every thing about them, and I will work to give them the most comfortable awesome life I am capable of.  I will never give up and never stop looking for answers.  I will change my mind, and the longer I trudge this road of autism the more I question, the medical system,  social service system, political system, and for sure the school system.  I took all of those professionals at face value and every single one of them has been a huge disappointment, but I'm learning to navigate my way and things are happening,  and getting better

If you are new to the Autism gig, it is a treacherous road and there is a lot of “Chatter” out there. Take what YOU need and leave the rest. I have been yelled at by women because I have not done things their way, I have burnt myself out on autism and had to take steps back.  I have second guessed every single move I've made as a parent, I have cried, I have laughed, I have been more scared than I thought was possible.  I found a strength that I never knew was possible Find yourself a group of moms that are like-minded and feed off of each other. Don’t get sucked in by celebrity do what works for your kid and your family. Good luck and God Bless.