Beach Boy

Beach Boy

Wrote “I saw a dolphin with mommy” in the sand.. was proud and excited of his sentence

Advertisements

How Time Flies

Image

It’s Been Almost 4 years since I’ve updated this blog, and it would take me 4 years to catch up on the challenges and amazing progress we have come across on our journey.. I stopped sharing my openness about my struggles and victories because I ran into some judgement along the way. I became very private with my life because I felt hurt by how some people didn’t understand me or my son. I became protective of my family. Now, after journeys and journeys and growth and growth, I am confident in my parenting style, I am okay with not being understood, and judgement has no place where you operate from love, it doesn’t even register, and that is what we do here, in my family, we are about love. We take the challenges as they come, do with them what we can, celebrate the victories, and we do it together. 

Jais has made such amazing progress, I can’t even begin to express my absolute joy in the little boy he has become.. Just two days ago he learned how to ride a bike. And I don’t mean that I stayed out with him for hours, picked him up when he fell, or that he used training wheels, I mean, he decided he wanted to learn to ride a bike, went out and grabbed an old junkyard bike that we had on the side of the house, with completely flat tires, and while I was in here doing homework with his sister, THAT BOY TAUGHT HIMSELF HOW TO RIDE A BIKE! He came in to tell me, “mommy I’m riding a bike!” and I thought he was using his imagination, but there he was, riding this barely ride-able bike. Since then, Daddy has fixed the tires, and he rides the bike like he’s been riding it for years, stops on a dime. He’s amazing, well above his peers in math skills, spending 70% of his school day in a mainstream second grade classroom, builds wind gages out of pencils and masking tape, draws maps of the country, and fixed my macbook… don’t even know he did it, but he did, I swear, saved me $1,000 dollars!

It hasn’t been an easy journey, by any means, each and every victory has been reached through hard work (intensive therapy 5 days a week in our home), school days with extra P.E. sessions, and lots and lots of patience… we still thank our lucky stars for all of his helpers, and we still find ourselves sighing with frustration just as much as we find ourselves giggling with this little boy. One thing is for sure, this boy has taught us more than we could ever teach him… We love our challenging joyful journey, and I’m excited to start sharing it again, to anybody who will read this with open hearts and minds!

My book about autism

I’m in the very very early stages of attempting to write a book about my experiences with Jais and autism. This is just one little brainstorming writing session- completely full of typos, and un-edited. But, I thought I would send it to you guys to see what your thoughts were. This is the first time I’ve ever written down my labor story, and it was very difficult and emotional . . .

…………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………

Into the late hours of the night, his squeals and babbles echo through the hallway. I have not slept soundly for 5 years. The day I became pregnant, I started worrying, maybe even abnormally so.

I was 23 years old, a college graduate, and an Air Force Wife. Facing the uncertainty of adult life and all that it entailed was overwhelming enough. But, to add to the stress of that, I was half a world away from my mom and sisters who were cornerstones of my heart. When deployment became an everyday discussion in my husband’s career, and an inevitable future, that was the last straw. I prayed for guidance, understanding, patience, and a sense of calm in what felt like an emotional tornado in my heart. Like an irrational thought often does, the idea to have a baby in order to defeat loneliness popped into my head. And it seems less then two weeks later I was pregnant. I knew I was pregnant before I even was, before it registered via the little pink lines. Because I had insisted I was pregnant so many times before, only to waste ten dollars on a home test, Chris didn’t believe me. He refused to buy a test, and I lay defeated in the bathtub, drawing circles in the water over the life forming inside my belly. Like, he always does, Chris gave into me and we purchased yet another pregnancy test, this time it turned out positive, and the anxiety began. I had already been on anti-depressants, coming from a family of substance abusing emotional wrecks. So, therapy was already a part of my life. Now, though there was a real concern. I could no longer have emotional tirades and go walking down the street in the dark insisting I was going to hitchhike back to California . . . all the way from where we were in Texas. Each sobbing episode would affect my unborn child, and I was terrified. I was on Lexapro at the time I got pregnant, which was not considered safe for a pregnant woman or her baby, so I was switched to Zoloft, a much safer option. Taking me off of anti-depressants all together was not even an option because my emotions were so volatile, even on the medication.
My emotional outbursts were no longer fueled by jealousy or feelings of inadequacy. Now, I was facing some real crises. I began to fear for the health of my baby, I worried about diseases, miscarriages, deformations, and genetic disorders. I worried myself sick, but worked hard to keep my heart rate down in order to maintain a safe and healthy balance for the both of us. The first trimester was full of tears, prayers, questions, and fears. But it seemed like the first day of the 2nd trimester I woke up a new woman. I felt happy, balanced, hungry, and ready to exercise.
I didn’t stay away from caffeine, I allowed myself one Pepsi a day, and I even snuck one or two mountain dews throughout the 2nd and 3rd trimester.
Jais developed beautifully. I gained a healthy 30 pounds, and my healthy baby boy was perfect inside my uterus. At 38 weeks I went into labor. Chris was a navigator on the C-130 at the time, out at Pope AFB in North Carolina. I woke up at 6am feeling contractions. I walked around the house, and recorded every contraction, seven minutes apart. I showered to ease the pain, 6.5 minutes apart. I decided it was time to call Chris. He came home from work and we were off to the hospital with our cameras and bag full of cute baby outfits. After I was monitored and examined, I was sent home and told that I was not in labor, but just experiencing Braxton hicks. Since it was December, we decided to go Christmas shopping. By this time my contractions were 5 minutes apart. It was 11am and I was miserable. Pushing the cart through the BX, I had to stop every 5 minutes and squat on the ground in pain. Everybody asked me if I was okay, and we explained that I was just experiencing Braxton hicks. The ride home seemed like it was the longest ride ever. Chris decided to stop somewhere, and then we were detoured the long way around. I was contracting the whole time, and each one were stronger then the last. When we got home I insisted Chris call the hospital and explain that I was in a lot of pain. They insisted again it was Braxton hicks and advised me to take some Tylenol pm and get some rest. I took two Tylenol pm, but was unable to rest. After an hour at home, and no relief or break in the contractions, I cried and begged Chris to drive me to the hospital again. When I got there, they seemed annoyed to see me, and said there was no room in triage and that I would have to wait in the waiting room until there was room. I was in extreme pain and could not sit still on the hard leather benches. In the bathroom of the waiting room I began to bleed. After begging the nurses for a bed, they finally gave me some rest in triage. The same doctor that had checked my dilation that morning, checked me again, and insisted I was still not dilated enough to be in labor, or admitted. He said that I was simply dehydrated. I was hooked up to an IV, and my contractions were not monitored, nor were the heartbeat of my baby. Three hours went by with me laboring, 5 minutes apart, 4 minutes apart, 3 minutes apart, and then my mucous plug came out. At this, Chris called the doctor over to see me. They hooked me up for contraction monitoring finally, I was crying because of the pain, and the nurse told me that I needed to be still while she hooked me up, and that I was fine, this wasn’t even real labor. The doctor confirmed that it was in fact my mucous plug, and checked my dilation again. He announced that I was right around 4 and perhaps could be admitted finally. He then said he was going to bring over another doctor for a second opinion. As soon as the other doctor stuck his fingers in to check me, his face looked concerned, he said “You’re at a 10, ready to push.” From there it was a flurry and scurry of medical procedures. I was wheeled quickly down to the labor and delivery room. It was discovered there was not monitor on my baby and as soon as they hooked up Jais to a monitor, things got very urgent. I was given an oxygen mask, I was briefed by a surgeon and informed I may be getting an emergency c-section. It was explained to my very quickly that Jais needed to come out now, and there was no time for an epidural. I was given something in my IV to help with the pain, but I FELT EVERYTHING. They broke my water, and I pushed once, after that, Jais’s heartbeat was at a very concerning 30 and I was told that an episiotomy was going to be done, and forceps were going to be used. I felt those scissors cut my skin. I felt those forceps squeeze into me and pull out the baby I was supposed to push out with my inner woman strength and instinct. There wasn’t even time for Chris to cut the cord, or for me to hold Jais, as was written in my birthing plan. The birthing plan might as well have not been written, it was gone like the beautiful labor I was supposed to experience. Jais was whisked away from me before I even got to look at his face. I couldn’t hear him cry. I begged and begged to see him, to hold him, to feed him on my breast. I begged to kiss his little cheeks, which were marked red where the forceps grabbed him and pulled him out of his warm womb. How scary it must’ve been for him. My poor sweet baby who was supposed to make his way safely through the birth canal, was rushed out, his little heart barely beating, rushed under the lights, wondering where his mommy was. Chris couldn’t film the labor because of the emergency state we were all in, but was finally able to turn on the camera once jais’s second apgar was taken and he started breathing on his own. I’ve watched this video only twice, and it breaks my heart every time. ON the video you can see me, face flushed in fear and pain, eyes wide with tears and panic. You can hear me asking to see Jais over and over again, asking if he’s okay. And then you see in the corner, the doctor who insisted I wasn’t in labor. He was a resident, on his way to be a pediatrician, doing rounds as an OB. We went to the hospital director a week later to file a formal complaint about him. We were gently coerced against doing so, and with a seemingly healthy baby boy in our arms, we left the hospital without even being able to tell our story to a pair of caring ears.
Looking back, I wish I fought for myself. I wish I had the confidence and strength to insist I was in labor. I wish I had the knowledge to insist my baby was being monitored. I wish I had the chance for a peaceful labor. This is why my second baby was born with the aid of midwives, and it was everything my first labor was not.
Jais was healthy, after his second apgar, and a small bout with jaundice in his first week, he was beautifully healthy. He had a few ear infections, about 8 his first year, but besides that he was a very beautiful “bouncy baby boy”. I can even say he was an extremely good baby. Some people might remember with cloudy vision that their baby only cried when hungry, tired, or wet. But, seriously, this was Jais. He was happy, quiet, easy to transition, and extraordinarily independent. After Jais was diagnosed with Autism, we reflected back to try and see when it was first noticeable. We watched videos of him as a baby, we looked back at pictures, and we even looked at the notes in his baby book. I can honestly say that I feel it was apparent from day one. And, I personally in my heart believe that his traumatic birth set it off. I don’t believe that it caused it; I believe (without any medical evidence or scientific research to back me up) that he had a genetic disposition that was set off by his traumatic birth. I hope and pray that this is not the case, because then I can put the blame back on myself- why didn’t I insist I was in labor? Why didn’t I insist they monitor my baby? These questions plague my heart daily.
But, if there is even something to blame, then am I not loving and accepting my son for everything that he is? If I feel angry, am I somehow betraying Jais? I NEVER want Jais to think that I don’t love him for exactly who he is. Sure, I want to help him rise above autism, have all of the opportunities he deserves, become everything I know that he can be, and have all that life has to offer. But, if he’s never “cured” of autism, if he never crosses over into “neuro-typical” status, I will still believe he is complete and perfect exactly how he is. He is beautiful and complex in ways no other human being in the world is. If he does in fact become “cured”, I can honestly say I will miss the “autistic Jais” that I knew. When you have an autistic child, you mourn for about a week, the child you thought you’d have- the walking at 1, talking at 2, neuro-typical child that you’ll brag about in the playgroup. And then you move on. And I’ve spent every day after, and will spend every day in the future falling in love with the CHILD THAT HE IS!

You look into the eyes of this beautiful handsome boy. And you hope and wish he would have everything, every opportunity, every experience, and every chance that he deserves. You look into his eyes and send a wish into the future that he will be safe, that he will be healthy, and that he will fall in love . . . that somebody will fall in love with him. Not because like every other average woman, you simply desire to be a grandma, but because you just want him to feel life, feel warmth, feel the comfort that is being a husband, having a wife, being in a family.

Thomas – a good friend for autistic children

This was a great article- retrieved from: http://www.myfavoritetoys.com/autism_thomas.php

Millions of children around the world love Thomas the Tank Engine. Parents everywhere have watched their children learn, grow and have fun with this cheeky little blue engine. For many children with autistic spectrum disorders, Thomas plays an even more important role. A 2002 study by the National Autistic Society in the UK shows that Thomas the Tank Engine helps break through the barriers of many children with autism and Asperger syndrome. Parents of children with ASD have known for years that Thomas and his friends have special value to their children. The report confirms this anecdotal evidence, stating that children with ASD associate far more strongly with Thomas the Tank Engine than with other children’s characters. Some parents of children with ASD have reported leaps of emotion, imagination and symbolic play that were unimaginable before the child’s relationship with Thomas. Why Thomas the Tank Engine? Children with ASD seem to be particularly fascinated with Thomas. A number of reasons have been proposed to explain this special relationship. Children with autism are often attracted to objects arranged in lines (like cars on a train), as well as spinning objects and wheels. Thomas and his friends have bold, easily-to-recognize colors. Thomas and the other characters have friendly faces, often with exaggerated expressions. In the videos, the expressions are set for some time and are often accompanied by simple narration explaining the emotion (“Thomas was sad.”), allowing children to identify the feelings and expressions. The narration of the videos is calm and clear, and changes are ‘signposted’ clearly. The stories are relatively short (less than five minutes) and easy to follow. Things that go wrong are usually resolved by the end of the episode. The unique stop-action photography of the videos allows the background and scenery to remain still, allowing for greater focus on the “big picture” with less distraction. The characters play predictable roles. Children with ASD often have the need to identify, list, collect and create lines with favorite objects. Thomas is especially suitable for these activities. Thomas is a True-Blue Friend Many children with ASD have a hard time making and maintaining friendships. Thomas and the other characters can serve as substitute friends in a world with few friends. Parents of children with autism and related disorders often mention that their children find Thomas calming and comforting, rather like a ‘security blanket’. Children often like to have their trains with them at all times. The sound of the videos playing in the background can have a comforting effect while the child is engaged in other activities. This is especially important for children with ASD, where the world is often frightening beyond their understanding. Learning with Thomas Thomas often serves as a ‘gateway to learning’ for children with ASD. The interest in Thomas provides children with the motivation and interest to try new things. For example, a child who is not otherwise interested in the computer will eagerly learn computer skills when introduced to a Thomas game. Thomas also often plays an important role in learning color recognition, numbers and language skills. Because language is such an obstacle for many children with ASD, Thomas’ influence on these skills is especially beneficial. Parents report children echoing entire chunks of Thomas videos. (This use of language, called echolalia, is common in children with autism.) Over time, many children move to using Thomas language in real-life situations. Parents have reported great success in using Thomas language with their children, such as “Stop, the signal is up,” or “Apply the brakes”. Emotional and Social Development In the videos, Thomas and the other characters have exaggerated facial expressions, which are often set for a relatively long period of time. This allows the child with ASD to relate to the emotions, expressions and feelings of the characters. This is especially valuable for children who have difficulty understanding people and their thoughts and feelings. You can see some examples of Thomas’ facial expressions on our Many Faces of Thomas page. Perhaps the best way to understand the profound effects Thomas the Tank Engine has had on children with autism is to read the accounts first-hand. Read the stories that some readers have sent to us. We would love to hear about your experiences as well. Please drop us an email at asd@myfavoritetoys.com with your stories about Thomas and children with ASD. Resources Hannah Brown, “Autistic Kids Make Connection with Thomas,” New York Post, July 26, 2000. Page 57. The National Autistic Society, London, England. “Do children with autism spectrum disorders have a special relationship with Thomas the Tank Engine and, if so, why?” Research undertaken by Aidan Prior Communications. February, 2002. www.nas.org.uk

Also on this website:

For many children with autism and other Autism Spectrum Disorders, Thomas the Tank Engine serves as a gateway into the world of understanding emotions. in a 2002 study by the National Autistic Society in the UK, researchers found that some children were able to make significant leaps in emotional development that were previously unimaginable. (You can read more about the study here.)

Go to website to see the many faces of Thomas.

Thomas Live on Stage- Autism Friendly Tickets!

So, Jais has a new obsession with Thomas- and I knew about this show, but it is only by accident that I discovered discounted tickets and quiet rooms for these shows- some of them have already passed, but there are plenty shows still to come!

from website: http://www.autismspeaks.org/sponsoredevents/thomas_dates.php

Thomas & Friends TM Live! On Stage: A Circus Comes to Town
Autism Speaks is partnering with Thomas & Friends Live! On Stage: A Circus Comes to Town, to bring special performances across the country tailored to children with autism and their families. AEG/ThemeSTAR will donate one dollar to Autism Speaks from each ticket sold for these special performances and will also offer a discount on tickets to our families. Select performances will have a quiet room.

Check out a Thomas & Friends performance in your town!

Sat., January 31, 2009 – Los Angeles, Calif.

Time: 5:00 p.m.

Location: Nokia Theatre

Quiet Room Location: Nokia Boardroom

Ticket Price: $15 for all seats except P1

Discount Code: AUTISM

http://www.ticketmaster.com

Tues., February 3, 2009 – Ontario, Calif.

Time: 7:00 p.m.

Location: Citizen Business Bank Arena

Quiet Room Location: TBD

Ticket Price: $15 for all seats except P1

Discount Code: AUTISM

http://www.ticketmaster.com

Fri., February 6, 2009 – Costa Mesa, Calif.

Time: 7:00 p.m.

Location: Segerstrom Hall

Quiet Room Location: TBD

Ticket Price: $15 for all seats except P1

Discount Code: 8735

http://www.ocpac.org

Tues., February 10, 2009 – Bakersfield, Calif.

Time: 7:00 p.m.

Location: Rabobank Theatre

Quiet Room Location: TBD

Ticket Price: $10 for all seats except P1

Discount Code: AUTISM

http://www.ticketmaster.com

Fri., April 17, 2009 – New York, N.Y.

Time: 5:00 p.m.

Location: Beacon Theatre

Quiet Room Location: TBD

Ticket Price: $20 for all seats except P1 & P2

Discount Code: AUTISM

http://www.ticketmaster.com

Tues., June 2, 2009 – Grand Prairie, Texas

Time: 6:30 p.m.

Location: Nokia Theatre

Quiet Room Location: TBD

Ticket Price: $15 for all seats except P1

Discount Code: AUTISM

http://www.ticketmaster.com

Tues., June 16, 2009 – Uniondale, N.Y.

Time: 6:30 p.m.

Location: Nassau Coliseum

Quiet Room Location: TBD

Ticket Price: $15 for all seats except P1 & P2

Discount Code: AUTISM

http://www.ticketmaster.com

Fri., June 19, 2009 – Newark, N.J.

Time: 7:00 p.m.

Location: Prudential Center

Quiet Room Location: TBD

Ticket Price: $15 for all seats except P1 & P2

Discount Code: AUTISM

http://www.ticketmaster.com

Magic Words

Jais just got home from school 5 minutes ago, and said “apple” to request his snack- on his own- no prompts. Then when he saw a new box I got in the mail said “help” – asking me to open it. When I grabbed the antibacterial gel to wash his hands for snack time, he said “handsome”- relating it to lotions, which we call “handsomes”, and then said “sit down” as he sat down for his snack. I am so happy and feel so content right now. Sometimes I get so caught up in the day that I don’t even realize the magic that is happening all around me . . . What a beautiful day it is today!