AAC Autism Friendly Trunk or Treat Fall Fundraiser Event

When: Saturday, October 29 at 3 PM – 5 PM

Where: Interim parking lot, 1901 N Union Blvd, Colorado Springs, CO 80909-2229, United States

spiderWho we are: Autism & Asperger Connections is a 501(c)3 non-profit organization linking families, individuals, and professionals in the Colorado Springs community to autism support, information, and resources. We currently provide 14 different free support groups throughout the community and have reached 300+ people locally and more than 600 people online in our Facebook community. The support groups range from Mom’s Night Outs and Dad’s Night Out to Family Support and Social Groups. We have Teen Groups, Tween Groups, groups for Young Adults, and groups for Adults on the spectrum. When we find the need for a new group, we create one to meet the needs of the community. AAC promotes awareness via educational presentations to local organizations like the USAF, El Paso and Teller County 911 Dispatcher Authority, and other local groups and schools upon request. Our organization helps to link members to provider services.

AAC is comprised of all volunteers. There are no paid staff, and we do not maintain an office. All of our budget is comprised from donations from the community. The money raised goes directly back into funding our programs.

Who can attend: People and families of people on the autism spectrum and SPDHow you can help: We need decorated car/truck trunks filled with candy for the kiddos

If you plan to provide a car/truck trunk for the event, please keep in mind this is a sensory friendly event so no scary or super loud audio costumes or decorations please.

To RSVP, join the fun, and/or make a donation please contact us at:costumes

Email: info@autismaspergerconnections.org
Paypal: http://autismaspergerconnections.org
Call us at: 719-344-5619

Please RSVP so we know how much candy and trunks we need to have!

A New Life and A New Journey

By D. Richards

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I knew that October day would forever be ingrained in my memory.  From the outset, I expected that I’d either be reassured that there was nothing to worry about, or I’d find my greatest fears confirmed. On that day, I barely felt the breeze in my face as I stepped out of the car and put on my sunglasses. I heard a freight train ramble on its way, as we headed into the Developmental Pediatrics Center downtown. I don’t recall much more because I was preoccupied, and had been for days. Finally, we were to meet with a specialist regarding concerns about our son’s development. My husband and I walked in together silently, holding hands with our two-year-old son (I will refer to him as dear child, DC).

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By that time, we’d had DC in daycare for a few months. We had seen first hand how he behaved differently, compared to his peers. He lagged behind in most facets of development, but particularly in communication and socialization. It was difficult to get him interested in activities with peers, enough to participate. He lived in his own world, a world of meaningless vocalization, repetitive behavior, and obsession with items. We had observed his typically developing 10-month-old sister and noted marked differences. Each time I watched them, I was overcome by a fearful sense of foreboding. Through staff at DC’s daycare, we had connected with a local Early Intervention group. I heard phrases like, “tactile defensiveness,” and when I tried to read up more, I was shocked to learn of possible implications. Even as a physician, I was not very informed about ASD and such developmental disorders. I sunk into a state of denial, vehemently refusing to face the truth.

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Neither my husband nor I had slept much in days. DC was going through a particularly rough time, sleeping very little, having temper tantrums every waking hour, throwing chaos and worry into our lives and our hearts. The Developmental Pediatrician spent a whole hour with us. At the end of it all, she stated very calmly, “By definition, he has Autism Spectrum Disorder.” I swallowed hard and shed a tear. My husband was stunned and speechless. In that very instant, our challenging yet loving lives as parents of a child on the autism spectrum formally began.

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As you read this, you might nod your head in recognition of a similar beginning to your journey. You may think back to the past and wonder how you survived those impossibly difficult days, weeks, and months. If you are new on the journey, you may be relieved to learn that many others have gone through a similar process. This article is directed towards parents new on the journey. I’d like to share a few tips I learned over time that I hope will help you stay encouraged:

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1. You are not alone in this. In 2014, the Centers for Disease Control (CDC) reported new prevalence data for autism showing that 1 in 68 children (1 in 42 boys and 1 in 189 girls) have Autism Spectrum Disorder (ASD). If these numbers aren’t clear enough, consider then an average kindergarten class might have about 21 children. There might be at least one child with ASD in a group of three kindergarten classes. Assuming classes with only boys, just for the sake of illustration, you may have one boy with ASD in every group of two classes. Imagine the number of parents and siblings living with a loved one affected by ASD. The take-home message is that ASD is very real and very present in our world. At every given time, there are many people new to the autism journey, and many others that are more experienced. Most U.S. states have outlets and support groups where autism families can meet, share experiences, and learn from each other. You need not struggle alone. Reach out to others for encouragement and sustenance.

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2. It’s okay to grieve. I remember trying to get through the first few months and years after DC’s diagnosis, feeling low, depressed, and wondering about the future. DC’s ASD diagnosis was a blessing and a curse. Finally we knew what the problem was and could channel efforts meaningfully, but the very same diagnosis had many unpleasant implications. In retrospect, I feel that taking time to grieve helped me on my journey. Yes, DC was alive and kicking, but I had much to grieve about. DC would not develop language like other children, he might be looked at differently by some people, tantrums might continue for a long while, and I would have to get used to having a steady stream of therapists working in my home. My memories of getting my first child in school would not be about taking him to the bus and posing for a lovely picture, rather it would be about meeting a panel of school authorities for an Individualized Education Plan (IEP) meeting. Elisabeth Kubler-Ross wrote about the five stages of grieving; I believe those apply here also. Denial and isolation, anger, bargaining, depression, and acceptance – all stages that I have been through on my autism journey. You cannot reach the point of acceptance without going through the earlier stages of grieving. You cannot start healing till you’ve taken time to face the pain, disappointment, and trauma. Furthermore, you may have go back and forth with each stage of development, as you realize new challenges you may face as your child grows.

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3. You cannot afford to be paralyzed by your grief. When my DC was three, I was mourning the fact that he could not talk and would not socialize with other kids. I could not attend play dates; he would run off or throw a tantrum; it was so stressful that I simply gave up. Once, a college student I asked to babysit, refused to return a second time, once she learned of his diagnosis, fearing that something might come up that she would not know how to deal with. When he turned four and headed to preschool, I mourned the fact that I had to attend IEP meetings and seemed to be in perpetual  negotiations with therapists and schoolteachers. In kindergarten, I mourned the fact that at Valentine’s Day parties, I had to watch DC sitting in a corner while others sang, because he could not participate. In order words, you will realize new deficiencies with each phase of development and so you cannot allow yourself to be paralyzed by grief. You must draw support from wherever you can, and find a way to keep working on finding therapists, evaluating progress, and doing all you can to help your child improve. I have found that, over time, with adequate support, the pain and grief do subside somewhat.

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4. Avoid the stress; it’s not worth it. Do you have friends who inadvertently make you feel even worse about your child’s situation, who like to boast about their children’s accomplishments in a thoughtless manner? Do you have family who tell you that you worry unnecessarily, that DC will get better with time and is, “Just a little slow,” when you know there is much more to it? Do you have people around you who insinuate that if you do so and so, DC might improve, like you don’t already do enough? Well, confront them and ask them to stop. If they persist, it may be time to cut them out of your social circle. You have too much on your plate and cannot afford to spend too much time and energy with people who tear you down, rather than build you up. You deserve much more, and once you cut out unnecessary people, you will have more time to attract a more supportive group. Seek out autism support groups and find other parents dealing with similar issues. Focus on people who encourage you to enjoy your child and celebrate his or her strengths and uniqueness. Listen to people who are willing to make productive suggestions to help you work on challenges. You will feel encouraged, rejuvenated, and alive; you will feel motivated to do even more for your child, to do better than your best.

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5. Descriptive terms might make a difference. From the very beginning, I felt a twinge of resentment each time a friend or acquaintance would say, “He is autistic”, in referring to DC. I thought I was alone in feeling this way till I came across writing about people-first language. Advocacy groups first recommended this sort of language in 1988, as an option for describing people with disabilities. There is some controversy however, with some groups being in favor, and others not. For example, the people-first language has been universally rejected in deaf culture. My opinion is that each person has to decide what makes him or her uncomfortable and try to avoid it. I consider the word autistic to be all encompassing, implying that DC’s life is defined entirely by autism, and leaving no room for the possibility that there might be anything else worth discussing about him. Yes, my DC has autism, but he also has a lovely smile, is fascinated by the outdoors, loves organization and routine, and loves to read and play with his Legos. It has been therapeutic for me to have close family and friends use ‘has autism’ in describing DC, rather than ‘autistic’. I was able to eliminate a source of stress by a mere change in descriptive language.

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Is there a possible advantage to starting with the above considerations? The answer is a resounding yes. You will start on a more solid path, better equipped to start tackling the challenges that might come.

 

Bio: D. Richards is a full-time physician, devoted wife, and mother. She hopes to share her experiences as a professional mom parenting autism, in the hope that others might reap benefit. For a number of reasons including protecting the privacy of her underage child, she prefers to write under a pseudonym.

Monica Loves Designing Paper Made Clothes for Her Chipettes to Sing

by Gary Martinez

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This 9 year old girl loves YouTube videos today, wanna know why?

Monica knows all the words to her favorite Chipette song “Wrecking Ball” and can sing to it.

Jeanette is her favorite Chipette who wears purple clothes, glasses and is the lead singer.

 

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Here are her Chipettes wearing the clothes Monica made them.  She has a treasure box with play gold & jewelry to mimic the video.

Everyday this piece makes her feel special in her sensory lifestyle.

See, three years ago Monica could not even sing a word, follow a beat or speak in clear sentences.

 

Monica was retained in kindergarten, (the previous school gave her no support) as the sped kids were a sore thumb in the back of the room and were not included in activities so in return she did not learn or progress.

Then a good thing happened.  Her mother moved. She started at a new school and what a game changer.

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Monica’s current school has been the difference in her life from a principal who knows everyone by name to a staff who follows his example. We now get the necessary support we need and work as a team. Monica also got some low energy feedback treatment that opened up some non-active areas in the brain.

This combination with daily maintenance has turned Monica into a rock star who is a much happier little girl who is now in full day regular classroom but does get two 30 minute sped support action to make her day awesome!

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Positive people make a positive difference, living life through Monica’s eyes to give her the best day every day is how it should be with our unique creative kiddos. Monica rocks!

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Our Story

by Lyz Bryant

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In light of Autism Awareness month and our recent run in with the skepticism by the current school over our son’s diagnosis, I feel it’s finally time that I share our story with the community here. If our story can help just one other family going through what we WENT through to know that they aren’t alone, when we thought we were, then everything we went through was worth it. I’m sure there are things I have left out, or skipped and if this is all over the place, I apologize. It’s so much and my brain is crazy.

 

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On June 26, 2005 we became parents to an amazing little boy named Randall Alan Bryant Jr., aka RJ. He was an amazing infant. He hit every mile stone on time or early with the earliest mile stone being walking at only 7 months! He has always had this light in his eyes.

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He spoke late due to a tongue tie and lip tie but was speaking in 3 word sentences by 13 months, about 3 months after the revision of the ties. At 18 months he had the vocab of a 26 month old. He was such a curious little thing. At about 12 months though, we started to joke about him hitting the terrible 2’s early, but we were scared. Our funny, loving, toddler would throw violent tantrums lasting upwards of an hour, where I would have to lay on the ground with him in a hug hold to keep from harming himself. He once slammed his head against the wall, purposefully, so hard that he had a bruised goose egg on his forehead the size of at least a golf ball, and yes, at only a year old. He would hit, kick, bite himself, and slam his head on the ground, walls, anything. We asked for help but were told, “Oh he’s so smart and friendly. There is nothing to worry about. He will grow out of it.” Right after he turned 2 we found out we were expecting our second child.

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When I was about 7 months pregnant we had taken RJ in to meet his new pediatrician because we had just PCS’d to Georgia. The pediatrician took one look at him and said, “He’s rough” to which my husband and I agreed. He looked at me and asked if we had thought about medicating him. I said “No, he’s too young for that”. The pediatrician went on to tell us about this medication, Risperdal, for kids with autism sometimes and it works great. He said we should try it because with the new baby, his behavior at the time would be detrimental to his (baby’s) well-being.  So we agreed because we didn’t want to take the chance of our newborn being in danger. We saw absolutely no change in him at all a couple months down the road and decided that there was no reason to put that into our 2 year old if it did nothing so we stopped it.

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When RJ was around 3, my husband had been deployed for a few months and there was a big falling out with a group of our friends because RJ was too rough.  Another friend shared with me that she had just had her son seen by a psychiatrist through Tricare, no doctor referral needed.  At that time I needed a break from the constant craziness of life of a deployed spouse with an infant and a preschooler who was too smart for his own good and on the go 24/7.

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We got in with a psychologist who confirmed ADHD and said, “Here are med choices that will help and you should see our therapist in office for behavior modification.” I decided to talk it over with my husband and we went back a few weeks later and started him on Adderall. It worked… until it didn’t.  And that started the never ending trial and error of medications. By the time RJ was 5 years old he had been on every single ADHD stimulant and non-stimulant that you could name at the time. We had also dove into anti-psychotics because his mood swings and meltdowns were getting worse.  We were sent for a psychological profile that came back with ADHD, Anxiety, and Bipolar Disorder. It took me a while to wrap my head around that one.

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In 2011 we moved to Cape Cod, MA with RJ on a cocktail of meds. When we arrived we couldn’t find a doctor to prescribe any of his medications or who would even see him to make adjustments. He did not handle the move well at all and ended up with his first psychiatric hospitalization at just 6 years old during Thanksgiving. He came home once again over-medicated and gained 25 lbs in a month. By this time we had lived there for 3 months and still another 3 weeks away from seeing a psychiatrist. We ended up having to receive a secondary insurance through the state to get him any services because Tricare covered nothing on Cape Cod.

Over the next 2 years we had been seen by doctors at Tufts medical center in Boston, and he had a full evaluation done by the May Institute for Autism. At Tufts they came back with a laundry list of diagnosis including RAD, ADHD, BPD, PDD, ASD  and more I can’t remember at the moment. But the May Institute insisted there was no way he had any form whatsoever of ASD because we couldn’t name something he was hyperfocused on, the fact that he tried to make friends and that his speech was advanced. We had a few calls to the Crisis Management team where they would come to our home and try to calm him down without hospitalization and it worked for the most part.

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In 2013 he just went downhill fast after an amazing summer visiting family. There was an incident with another family on our street that involved the police and then the Coast Guard command trying to kick us off base. A week after the incident, RJ went into an explosive melt down and threatened to hit his father over the head with a hammer after completely destroying the house which ended up with his second hospitalization. Two days later, we found out baby number 3 was on the way.

 

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During this hospitalization he seemed to do well. He was home 10 days later and back to school for his 3rd grade year. The school had always been an issue in Massachusetts. RJ started kindergarten in Georgia and at that time his teachers raved about how smart he was. He scored the highest in the grade on the standardized tests they took at the beginning of the year and he was permitted early testing for the gifted program, and accepted. However, when we moved to Massachusetts, they were a year behind where he had been in Georgia and they had no gifted program. He fell behind quickly due to boredom and no matter how much I tried to work with them they said unless he showed he could do the work then there was nothing they would do. I was at the school numerous times because of bullying issues, and teacher/ classwork issues and trying to get RJ on an IEP, to which they changed their minds.

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Around Christmas time 2013 we found out that we were receiving a compassionate reassignment to Colorado Springs, news we had waited for since moving to Cape Cod. We received the official orders on my birthday just a couple weeks later. The end of January brought a tough time for RJ and he was hospitalized again just 3 weeks before TMO would show up and start packing our house for our move.  He came home just in time to finish one more week of school and then we were moving. In the hospital this time he was put on Lithium, Abilify, and Chlonodine, the least amount of meds he had been on at one time in a long time. The move went relatively smoothly and RJ did okay for about a month, and then he went out of control again. Our new psychiatrist here left us in the care of his nurse. She tried to do an entire medication overhaul even though I insisted that his Lithium levels had to be low. No matter what, we could never keep his levels at a therapeutic dose.  The cocktail that she put him on sent him spiraling within a few hours, and I stopped it immediately, being 8 months pregnant, because I couldn’t handle that.

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About 2 months after we arrived in Colorado Springs, RJ ended up in the hospital again. This time he was at Cedar Springs. At that point they changed his medication again and put him on Depakote, and left everything else. We also decided at that point to go for RTC because he needed more than we could do at the time. We felt he needed a longer stay. I spent the last few weeks of my pregnancy going to visit him 4 times a week plus weekly family therapy.  There were SO many issues with his entire RTC stay. The therapists were great but he only spent a very small portion of his day with them. The techs on the other hand… they would sit and WATCH the kids break out in fights until they had to put their hands on them. We would sit during visiting and they seemed to sometimes almost encourage the fights. One of the techs sat and watched as RJ and some other children got in a fight to where it escalated so far as to RJ biting another patient hard enough to break the skin and require HIV testing. This happened twice and both times “no one saw what happened”.  We had also had medications added and changed. One day I got a call asking if they could give PRN (as needed) and I agreed. Then, I got a call back a few minutes later apologizing to me that they gave him the wrong medication, then again another call saying “Oh the doctor was going to add that one on anyways”.  I was stunned and had no clue what to do.  RJ also broke out in a rash all over his body from the beginning of his stay. He was allergic to the soap they used to wash the clothes so we were required to provide soap for his laundry. They washed clothes twice a week and the bottle we brought was for 64 loads. About 3 weeks after being in RTC they told us he was out of detergent. Not low, out.  We ended up finding out that the techs had been using his detergent for EVERYONE else on the ward.  We told them that they needed to replace it ASAP.  We were told they would. A week later it still hadn’t been done. We found that out because I received a phone call to authorize Benadryl for RJ because he had broken out, not just in a rash, but in hives from head to toe. At this point we were beyond fed up and brought him home.  He came home on Depakote, Haldol, Cclonidine, Seroquel, Abilify and Melatonin.

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About 2 months later, after watching him drool all over himself uncontrollably, shake so bad he couldn’t button his own pants, and watch him gain weight so quickly that a boys size 14 was too small around the waist for him, we decided to try some vitamins that a friend of mine had tried with her son. We figured if they didn’t work, we were no worse off than we had been.

The first few months were rough on the vitamins. The way you know they are working is when the behaviors get worse, then it’s time to taper down off meds. Then you have another month or two after all the meds have stopped for all the chemicals to make their way out of the body. It can happen sooner depending on how much protein intake there is, but RJ quit eating for a while.  We opted for online public school through Connections Academy until he was stable enough to go to school. About a month into everything we realized that homeschooling wasn’t working as RJ and I do not work well together as teacher and student.  We talked to our local school about him coming back. They automatically set up a meeting to “discuss the best possible way to help RJ when he returns,” with the school psychologist from another school that offered a class of only five students, more supervision and an IEP which I had been fighting for years to get him.

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Once the meds were completely out of his system we were seeing more “classic” Autism signs. It was like the medications hid EVERYTHING that would make the doctors say “YES it’s Autism!!!!” Dr. Drozd has been absolutely amazing for us. He got RJ the sleep study I had also been wanting for years. We found out this January that RJ has severe pediatric sleep apnea and possibly narcolepsy. He had his tonsils and adenoids removed, but we are still waiting on another sleep study and other testing on the narcolepsy side. He still sleeps a lot during the day, which gets him in trouble at school. He still is not sleeping through the night.

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We have had countless issues with bullying and his school district letting it happen. RJ was suspended once from his current school, for choking another student on the playground and yelling some pretty nasty words to this child. The other child admitted to verbally attacking RJ and pulling on him. Nothing was done to the other student. On his IEP he has transportation written in. We pulled him off the bus for a while because one day, the bus pulled up and I could already see it was bad. I went out to get him and was met with the bus driver yelling at me, all the kids going ballistic, and RJ cursing up a storm (something he picked up from his stint in RTC).  Later that night I had gotten on a local Facebook group to vent and low and behold, the para from his bus jumps on and messages me. She had the gall to call RJ a “problem child” and then admitted that what had happened was that another student was making fun of RJ for his ears being pierced, calling him a girl, and making fun of his glasses. She REFUSED to assist him and indeed, she and the driver joined in on the bullying coaxing the other students by saying that is earrings were “SOOOO PRETTY”. NOTHING was done to neither the driver nor the para. She REFUSED to apologize to me or my child.  She still is a para on a bus but they put her on another route per her request.

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We have been through hell and back with him. I know it’s not over yet, it probably will never be.

But he is getting better.

We have ABA now, and OT, and a dx that fits him better than any of those others ever did. Life as an Autism parent, even a high functioning one, will NEVER be easy.

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Our middle son takes the brunt of it a lot and I am so proud of the person my middle son is.

There are days where I sit and cry. I just don’t know what to do when RJ is screaming and yelling at us and calling us horrid names and saying he hates us. Those are the days I hate what we go through. The good days can be few and far between, but we have also learned to cherish those days.

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I think as a parent of a child with Autism, we all know that feeling. I think we are more fortunate because we don’t take the good for granted. Again, if our story can help encourage just one other family going through what we WENT through to know that they aren’t alone, then everything we went through was worth it. Just to help one other family feel relieved that it’s not them, it’s not their parenting, they didn’t fail, that things can be better. I’m sure I have left things out because things come up and I’m like “OH!!! I have to add that!!!” so, if you have any questions or want to talk more, I’m on Facebook and am always up for sharing more of our story.

Lyz Bryant

 

The Good Thing About Autism

By Kristi Wagner, Parent Contributor

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I remember bringing home my first born son from the hospital. I was obsessed. Overwhelmed by the staggering responsibility of taking care of this little life. And overwhelmed by the perfect beauty of our precious baby. Sheer, blinding love.

Those first months were a blur of holding him and nursing him a LOT. One night when he was three months old he was having a really hard time sleeping. Again. And, again, I did everything I could. But this time nothing worked. And he ended up shrieking for several minutes, inconsolable. I was devastated. I felt like a failure as a mom. And pretty much all I did was “mom,” so the feeling of failure and desperation ran deep.

So began my journey- the first of many books and frantic mom research to help my helpless little son.

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It wasn’t until he was about seven years old that we realized he had autism. And the journey continued. More research and books and support groups. Massive diet overhauls and sensory work and exhaustion and perseverance. And the poignant joy and work of having three more children.

And now he is a handsome, tall, pimply teenage boy. And he remembers football scores and history events impeccably. He reads and writes and is the model of discipline in completing his chores and home school work. I catch glimpses of a great man growing in him.

And then there are other times. When the video game isn’t going his way, and the faulty executive function in his brain betrays him. He throws the remote and storms to his room, crying and screaming like a toddler. And my heart breaks for this amazing young man who did not ask to have autism.

I’m struck by his patience through it all. It is his life, I suppose. It’s all he knows. He’s used to sounds being too loud. Crowds of people being overwhelming. Emotions flaring out of control.

So, I’ve learned to be a little more patient through it, too. I’ve learned that many times I can’t fix the problem. I sit with him sadly. My heart fully sharing the pain. I offer some juice or lure the dog to comfort him. And we get over it together.

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I am learning to embrace the bitter and the sweet in this journey my son travels. He may work through the many struggles enough to find a fulfilling niche as an independent adult. And he may not.

In the meantime we find meaning and hope in the knowledge that there is more to life than perfect social skills and high end careers. Deep joy surges in the mystery that we live in an upside down world. The truth is that in the ways that really matter the weak are strong, the last are first, and the losers are the ultimate, beautiful winners.

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What a privilege is mine that I get to be the mom as I fiercely love this boy! My heart and prayers stretch upward as I haltingly release this precious gift into the purposes for which he was created.

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What Should I Feed My Child?

By Becky Mccully

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We’ve been on the journey of feeling that our child is “different” from other kids for about one and a half years. He’s now seven. As we started reading up on autism, Asperger’s, ADD, ADHD, sensory processing disorder (all those names are overwhelming enough!!), we heard over and over about diet. XYZ can affect your child’s mood, behavior, learning, attention. My husband and I didn’t know where to start.

 

Finally, I chose to start by eliminating high fructose corn syrup (HFCS) from our diet. Why did I choose to start there? Because it’s in SO MANY foods: bread, ketchup, sweet pickles, canned baked beans, juice boxes, frozen juice, bottled juice, soda, candy, yogurt, pre-made baked goods, graham crackers, cereal. The list goes on and on. Our kitchen was full of the stuff. I was feeding it to my kids.

 

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Here it is in a fruit snack.

 

So I stopped.

 

While at the grocery store, I had to read every label, making grocery shopping much more time consuming and tedious. However, eliminating HFCS was a great choice and a profitable starting point. My son began to calm down, show better self control, and a broader range of emotions. Amazing!! We were thrilled.

 

One day our family decided to go hiking. It was a beautiful fall day. The leaves were changing, and the air was crisp. What a wonderful family morning that was!! Our son was happy and content. However, that all changed soon after we got into the car. Mom (me) had forgotten to pack snacks. Where was my brain? The only food in the car was dried papaya. I carefully read the label. No HFCS. I breathed a sigh of relief and fed it to my children. By the time we got home ten minutes later, my son was starting to become hyper. The kids were starving, so I gave them another snack. Within another ten minutes, my son was out of control with wild boyness, but he absolutely could not stop himself.

 

I ran to the packages…no HFCS. But they did have one ingredient in common…yellow 6.

“Yellow 6? That’s a food dye. How can we eliminate food dyes?” I thought to myself. I literally ran to the computer and looked up yellow 6 and Asperger’s. Oh, the plethora of articles and blog posts that popped up. Then I messaged some fellow parents whose children have Asperger’s.

Dried papaya

Ingredients may include yellow #6.

“Yes,” they said, “food dyes are horrible. Have your son do lots of heavy work (running, bicycling, exercise, playing with play dough). The effects of food dyes can last two or three days.” Sure enough, two or three days later, my son calmed down. Amazing.

 

We have now eliminated all HFCS, food dyes, artificial flavors, and artificial preservatives. I have learned a ton about the food industry. I’ve found brands of foods that my kids like and am starting to make snack foods and yogurt at home. Yes, buying organic and natural foods is expensive. However, making yogurt and other snacks at home balances out the budget.

 

And my son? He is much happier. He understands how his behavior changes when he eats HFCS and dyes. He is now reading the labels himself. I am thankful!!

 

And I may be ready to tackle gluten free. Gulp.

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Birthday Letter to Daniel – Age 4

Birthday cake   By Emily H.E. Brown

 

Dear Daniel,

Your birthday letter comes late this year. Your parents have been unreasonably busy. Your papa is in massage school and I am building a practice (moving to a new office) and learning a LOT. I’m learning a lot about a lot of things, but being the mom you need me to be is something I always have an antenna up for. In these last 10 months or so, the “topics” for my development as your mom have included Human Design/Manifestors and Autism. According to Human Design, you are what is called an “Emotional Manifestor.” Your strategy is “to inform” and your life’s purpose is to “initiate” – what, I don’t know, but you initiate a lot.

 

Yesterday, we took you for a hard day of testing and they gave you a diagnosis of Autism. We really didn’t see that coming, so we’re struggling at the moment to get our footing. We’re hellbent on not letting you be defined by a bunch of people who have only known you for a day. We’re committed to taking what they can offer that we want for you and leaving the rest.

Shoots growing from the ground

Only optimism and strengths-based assessments welcome here, thank-you very much!

You are a REMARKABLE person. If you read the definitions of a “Manifestor” and an “autistic person” you’ll see that the descriptions are astonishingly similar. It’s really quite remarkable! Diagnosis is intended to serve only positive purposes, but in fact, it is very often violent and diminishing, extracting from a person all the specialness and gifts that they have to offer the world.   People who talk about “autism” seek to cure, fix, … They see the person described as autistic as damaged, disabled, …. They seek “ordinary” “indistinguishable from their peers.” I find that revolting. Who would want a life like that?!?! But when people talk about raising their Manifestor child, they talk about celebrating a child’s gifts, rejoicing in their child’s personal power, capacity to initiate, and seemingly total freedom from co-dependence; they talk about teaching him/her to cope with an excessively controlling society, and to consider others needs when making decisions. I see that as a balanced, sane, and sustainable way to love a human being.

In every school of therapy dealing with relationships, there is a core tenant – we must never seek to fix/change another person. I am in relationship with you and thus I must never seek to change or “fix” who you are. That should not be hard. You are not broken. Autism or manifestor or something else… the words we choose speak volumes about what we believe, and the way a parent describes a child speaks volumes about who that parent believes the child to be. I choose to believe you are Daniel: the perfect, whole, unique, wild, wonderful, powerful, intense, adorable person.

Mother and child holding hands

I am blessed and honored to parent such a soul!

I welcome access to services that support our pursuit of giving you a foundation for joy. I reject any words they might use that inhibit that. I believe this may require that we forego many services, because the purveyors of those services may carry baggage you don’t benefit from being asked to carry. Thus, I need to learn to hear through language, to get behind it, to find the spirit behind the words. You remain as you have always been, compassionate and calm. You still accept limits with remarkably little difficulty, and still don’t have many tantrums. We’ve learned not to set you up for tantrums too. One important way we do that is by making sure to let you get enough sleep. We’re trying to incorporate more outside time into our whole family’s weekend routines and to ensure that all the people in your caregiving/care-receiving routine are positive, non-anxious, and good for you.

I pray “that you will continue to explore the wonderful world with eyes, heart, and mind wide open; that you keep exploring the whole range of yourself: athleticism and musicality, solemnity and exuberance, sense of humor and soulfulness; and that you live into your gentleness, trust your intuition, and embrace the adventures that await you every day.”

Love, Mama

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Water Safety & Your Autistic Child

boy at poolThis week marks the beginning of swimming season, as outdoor pools across Colorado Springs opened on Memorial Day weekend.  Water safety, while a critical life skill for any child, is especially important for kids on the spectrum. Autistic children are frequently drawn to water, and statistics indicate that drowning is a leading cause of death for autistic individuals.

Before heading to the pool or the lake this summer, take the time to teach or review important water safety skills with your child.

Consider Sensory Needs
Many kids on the spectrum have sensory needs which must be considered when teaching them to be safe in and around water. Sensory avoiders may need to ease into the pool and get used to the water before they are able to enjoy the experience enough to benefit from a swimming lesson. Sensory seekers may love the pressure they get from the water and just jump right in, not recognizing the potential danger.  Tailor your approach to water safety based on your child’s specific sensory needs.

Teach Water Safety
All children, whether or not they are interested in swimming or even getting into the water, should be taught water safety skills.  The most important water safety rule is this: unless an adult is present, the child should never go into any body of water.  If your child is rule driven, teach him or her specific rules for safe behavior around water (e.g. “You do not go near water without an adult near you”, or for a younger/preverbal child “You do not go into the water without a familiar adult holding your hand”).  After the rules have been established, practice them with your child (at the pool, by a lake, etc.) to ensure he or she has internalized them, and so you can reinforce safe behaviors.

Teach Swimming
The ultimate water safety skill is knowing how to swim. Whether you choose to enroll your child in swimming lessons or teach him/her to swim yourself, set your child up for success by tailoring the approach and learning environment to your child’s needs. Minimizing distractions while your child is in the water (e.g. by scheduling lessons during less busy times) is generally helpful.  If your child is a visual learner, use pictures to show the steps involved in swimming (tip: laminate the pictures to make them water-proof!). You may also want to show your child a video of a person swimming before you begin lessons.  YouTube has a large selection of swimming and water safety videos for kids.  Finally, ensure that swimming skills are broken down and taught progressively from simple to more complex (so as not to overwhelm your child), keep things consistent, offer lots of opportunity for practice/repetition, and above all, keep swimming lessons fun!

Water can provide a wonderful sensory experience for kids on the spectrum. Teaching your child how to be safe in and around water will pay off in hours of enjoyable and refreshing summertime fun!

Autism and Trauma – New Film Featuring Stories of Autistic Adults

In discussions about autism, the stories and experiences of autistic adults are often overlooked. A new film, Autism and Trauma, aims to change that by bringing greater awareness to the issues faced by adults on the spectrum.

The Autistic Global Initiative (AGI) is a national program focused on initiatives that bring greater awareness to the growing population of adults with autism. The program itself is staffed and self-directed by adults with autism.  AGI is partnering with the CU School of Medicine’s JFK Partners to screen the premiere of Autism and Trauma, produced by Dr. Valerie Paradiz, executive director of AGI.

Autism and Trauma features adults with autism sharing the effects of trauma in childhood and their survivorship stories. Many autistic individuals experience trauma as a result of being mistreated in childhood or bullied in school.  Oftentimes, these negative experiences continue into adulthood, through harassment in the workplace or other social situations.  This can lead to the development of other conditions, such as PTSD.

AGI’s executive director, Valerie Paradiz, states: ”We are determined to get this important message out there, not only for adults who need support in recovery from trauma, but also for children with autism and their families. With the program’s recent move to Boulder, we are building strong relationships across Colorado and in neighboring states with service organizations, hospitals, schools, universities, family advocacy groups and self-advocates with disabilities. AGI leadership feels that solutions to many of the issues that face our community in adult services and adult life can be found within the adult autistic population itself. By designing and directing initiatives specific to adult concerns and to those who provide support to adults, AGI aims to be a part of the solution to the demand that lies ahead.”

This screening of Autism and Trauma is the first in a series of national initiatives aimed at bringing awareness to this overlooked, yet pervasive, problem.  Increased societal recognition and understanding is needed to address the urgent need for capacity-building in education, research, employment, housing and residential support, and community involvement for autistic adults.

What:  Film screening ~ Autism and Trauma
When: Friday, June 6, 2014, 6pm
Where: Anschutz Medical Campus, 13121 E. 17th Ave., C234, Aurora, CO 80045 (Rm. 1102-Education 2 South)

This film is open to the public. For more information, visit www.jfkpartners.org.

Support Group for Families with Kids on the Spectrum

images-2Our Family Support Group is starting up again on Saturday, 5/31. This is a support and social group for families with kids on the spectrum, ages 5-12.

While the group was on hold these past few months, we solicited feedback from our membership on preferred meeting days, times, locations, and format.  Based on your feedback, this group will now meet once a month on Saturday mornings (the last Saturday of every month) from 10:30am-12:00pm. We will have a fun activity for the kids at each meeting, while parents visit with each other in the same space for a concurrent parent support group meeting. Member feedback also indicates that meeting at a library is not ideal (primarily due to space and noise restrictions). Special Kids Special Families (SKSF) has graciously agreed to allow us to use their space at their Adult Services Facility at 3450 N. Nevada Ave. Thank you SKSF!

We look forward to starting up this group again, and hope you’ll join us on 5/31! For more information or to RSVP, please contact us.

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