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

A couple of kids, a picket fence and a Suburban

All I wanted before I was a mom was a house with a picket fence, a couple of kids, and to drive a Suburban.  Well I should been more specific in my wishes, because I got all of those things and was over the moon happy.  Then autism invited itself to our lives and is a house guest from hell.

Seriously, I thought motherhood was going to be this amazing journey with my kids and I was going to get to run the PTA, run the sports activities, make sure my kids were social, and my house to be the Kool-Aid house (do people even know what the Kool Aid house is anymore?), where everyone wanted to play...... it was a plan easy to accomplish and achieve, I had this little June Cleaver dream going on in my head.

Then that fucking autism arrived, and I swear to God it cracked the parenthood foundation like nothing I could have ever imagined.  The autism arrived and it took away every shred of a dream that I had of motherhood.  I guess it's not appropriate to say, it took everything away, because I still am a mom - it EDITED my dream of motherhood.

Autism changed the plans that I would be the house everyone wanted to play at.  How can anyone play at our house, when we have non talkers, and we haven't grown out of Sesame Street at 7 years old, and instead of boy scouts, sports, and play dates we are in therapy after our 30 hours a week at school, we go to therapy 10 - 15 more hours a week.  It made the relationships we had very hard to keep up with.  My friends with typical children, don't want to play here and watch the same episode of Sesame Street we've been watching for 5 years or Cars, they have moved on.

Autism did however, put me in the lives of some super amazing autism families that are so awesome to my kids, and we all just "get it".  We went to a party or a gathering with them, and there is no need to "explain" our kid needs a moment, or why we can't sing "Happy Birthday" at a birthday party, or just figure out how to help each other out when we are trying to juggle all our stuff in addition to an over stimulated and anxious 6 year old that is ready to bounce himself off of the planet getting to the car.   We just have this amazing connection and understanding that I'm so grateful for.  I see the moms of typical kids and it's all a contest and gossip, and who made the better teacher gift, and just bullshit.  So that dream of motherhood I had, would have in some respects could have been a useless nightmare. Autism altered my motherhood in an awesome way because of other autism moms that would walk through fire with me and show me how to get out of it.

I lost friends and people "got busy", I also walked away from friends, because I got sad and hurt when they would say stuff like "he doesn't play with my kid, he ignores him",  "he looks so normal", "he's so cute, he'll just grow out of autism".  I politely and silently died a little bit inside, because the reality was that my kids have autism, it's not curable there are things about them that will always be different even if we are struck with some level of recovery.  One of my kids is severely impacted with autism and his needs are significant, parenting him gets more challenging each day, not easier like some typical kids as they get older.  Some of our family and friends will never understand that, and have politely put us on their "B" list of friends.  We don't get invited to parties, or we get invited an hour before parties start because they know we can't get a babysitter at such short notice. 

There are days when I long for a life of easy parenting (which I know is not reality).  Where I can just say "We're going to the movies", go and buy the ticket, some snacks and everyone sits down watches the movie laughs and or cries appropriately in the right places and we go home.  But with autism, we have to start prepping the movie about a week before we go, talking about the theatre, the darkness, the seats may move, it will be loud, the screen will be way bigger than the TV at home, and basically tell them about the movie we are going to see, because you see autism doesn't like surprise or the unexpected.  We may and have arrived at the movie theatre and the anxiety that comes with autism and had to leave before we could get autism under control to be courteous to the other paying customers.

After 3 years of desensitizing and working with therapists, and a ton of blood sweat and tears, and my kids finally go to the beach, and one of them goes into the ocean!!  So we have victories in some areas, we have to basically go through a war zone to get these victories and I relish and love every single victory that we have.

As Autism designed our life, and continues to design our life I usually hate what it has to do to our life, but I adapt and work through it until we get to a place of comfort and acceptance with whatever the issue may be.

My son's new favorite song is "Fixer Upper" from Frozen, and I swear, it couldn't be more appropriate when he walks around the house and sings  "You can fix the fixer upper with a little bit of Love"........ yes baby that is what mommy does all day everyday, tries to fix my fixer uppers with a little bit of love.   And sometimes a few tears, some laughter, and some patience, and some frustration, and some gentle coaxing and a lot of LOVE.

Autism - Round 2

In the midst of my oldest son getting diagnosed with Autism, I had a baby, a boy, and the cutest freaking little cherub ever!!  Jackson arrived 2 weeks after Franklin's official diagnosis.  So I was at home with a newborn and a new diagnosis of autism and the doctor handed me a prescription for OT and Speech therapy for Franklin and said "see you in a year".  That's it, that's all our medical community has for you when you're newly diagnosed.  More on that later....

A year into therapy Franklin turned 3 - Jackson turned 1 and I went to the doctor just to get a physical because we switched insurance and I wanted to meet our deductible so we weren't paying a bunch of money out of our pocket for speech and OT therapy.  Well at the at physical and mammogram I was diagnosed with State 1 Ductal Carcinoma - Breast Cancer, and felt like I was living in a massive vat of SUCK FEST.

I had to take a few months off of my strong research and search for stuff for autism and deal with the inconvenience of cancer (and I'm almost 5 years cancer free, and do not take that lightly)  I couldn't think of the seriousness of cancer because it paralyzed me.  So for 6 months I was surgically treated and had 6 surgeries to remove the cancer, get a hysterectomy, and reconstruction.

So a 1 year old, a 3 year old 20 hours a week of ABA in the house a week, a full time working husband, recovering from cancer at about 15 months Jackson started to lose some of his vocabulary, starting to fall behind, and crying constantly.  He was different than Franklin, but I had this horrible feeling in my stomach that he was going down the path of autism.  He just wasn't doing the things that other babies did.  He would obsessively cling to one toy, crash his body into things, no sensation of pain, babbling gone and loss of about 30-40 word approximations that he had.

I felt him going into the abyss of autism, and one of our in home supervisors also recommended that we go to the neurologist and have him thoroughly checked out.  Because even though it was something we all suspected you don't get very far in the system without a doctors diagnosis of autism.

At about 21 months Jackson received his diagnosis of autism and it felt like I was hit in the stomach with a club, and it hit my husband especially hard.  But I had to plow through the feelings and get down to the road of treatment, and off to the races with 20 hours of ABA, and some OT.  So just when I thought I would be able to get out and move amongst people, I became more locked into my house than ever.  25 hours of therapy for Jackson, and 25 for Franklin, I was locked and stuck in home therapy or an office waiting room waiting for the kids to finish therapy.  I was almost a year cancer free, and started to fall into a very dark place, and very sorry for myself, and I couldn't see past the pain. I was lonely and angry, and scared, and determined to get myself healthy and help my kids.

ABA therapy and school have worked for Jackson and caught him up like they were supposed to.  However, the developmental and behavior challenge that make him "different" than neuro-typical children are there and in someways probably always will be.  Jackson's needs and abilities are on a total different place on the spectrum than his brother Franklin.  His needs are still significant and very different than Franklin's.  I heard this phrase after Jackson was diagnosed  "You've met 1 kid with Autism, well you've met ONE kid with Autism", and it couldn't be more true.  While both my kids have a diagnosis of autism it manifests itself so differently in each of them it is almost fascinating if it wasn't so baffling and painful.

Jackson is now 5 and about to enter Kindergarten in the fall.  Thank you for following us as we design our lives by autism.

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.