Monday, March 31, 2014

Time to Connect!

Autism Awareness Month starts April 2. Time connect! Warriors ...unite! I want to hear your stories, I want to know about your journey with Autism. One of of the biggest resources to handling the challenges with autism is the autism community itself! You can read book after book, but it's the hands on everyday experiences of the people we come in contact with that provide the most valuable resources. I seem to be a magnet for this, everywhere I go I connect with someone else whose child is diagnosed. Just last Thursday, just getting coffee, I struck up a conversation with the Barista and sure enough, he had a child on the spectrum. My son's story. Something was different about him the first night in the hospital. Acid reflux, vomit shooting out of his nose. Constant screaming. The nursery attendant bringing him right back in the room because none of their resources could comfort him. " He must still be hungry," she said and handed him back to me. No rest. Unusually clingy, with almost super human strength hitting physical milestones way before his time. He would scream though the night but as long as he was near me he was all smiles, started saying words, even sentences... Then....the computer rebooted itself and the smiling child was gone. Empty glances into the heavens, unbearable unhappiness. The worst moment was when I went to change his diaper in a Mc Donald's bathroom. The sensory overload was too much for him. The sounds , the temperatures. he screamed as if I was torturing him. Then, the banging on the door. " Mam, do you need help? What's going on in there?" By the age of two, a parents as teachers rep came into the home and saw it. " If he loses words," she said, " I'm giving you a form to fill out." He lost more words. He had early intervention through my state as a child with a learning delay, then by the age of 2 1/2, he was diagnosed officially by two neurologists with classic autism caused by a chromosomal duplication on 3q11.2. Since then, he has put in hours of therapy and schooling like a high school boy. He has carried in essence a full time job, while other kids his age run and play. He is a fighter, he is a leader, he is an adventurer. Those gifts, took a little boy who couldn't speak or look at you in the eye and made him the person he is today. He is rocking through kindergarten, loved by his class, leading them in their morning letter chants. His disability not only built him but it forged an advocate from a shy woman who spent most of her life just trying to keep peace. His struggles are my weapon. His communication barriers are my voice. His triumphs are my shield. His compassion is my armor. A warrior birthed, from a single diagnosis. Autism. Our story. Now....tell me yours.

Sunday, March 30, 2014

They Are Starving.... A discussion about sensory diets.

They are hungry. In fact, starving. Deprived of something essential, that they need to survive and thrive. The more children I encounter on the spectrum the more I see a common link. My son and I were fortunate. He had early intervention services through our state, and he had an EXCELLENT occupational therapist who was open about what he needed and was willing to teach me, a mother who was willing to learn. I sat through every early intervention session he had with her and I learned what I needed to do most with him, from her. She taught me how to incorporate a sensory diet into his daily life. She knew what he needed before I did. She knew that he wasn't going to be able to accomplish anything, without getting his sensory needs met first. Sensory processing disorder and Autism go hand in hand, in fact many times the diagnosis of these two disorders are mistaken for each other. They are like sisters holding hands. Sensory processing disorder can come in a couple of different forms. One form, things and experiences being too much to take in, like walking straight out of a dark theatre into a bright afternoon sun. Or two, things and experiences not being intense enough, like not being able to feel your face after getting work done in a dentist's office. Imagine either one of those scenarios going on all the time, 24/7. Imagine that feeling or lack of feeling ten fold. Imagine having thoughts but not being able to express them because that scenario makes it impossible to communicate. Imagine just trying to do your everyday activities in that state! If you can imagine, then welcome to Autism! In order for someone on the spectrum to function in a world made for nuero typical people, they have to have a sensory diet in place. This has nothing to do with nutrition but just like you would not expect someone who had not eaten for a week to be able to function well at their job, a person on the spectrum cannot function without their sensory needs being met. There are a series of different activities that are "fed" to that person during different times of the day. The activities, which can range from swinging, bouncing, pressure, etc., help calm the nuero pathways. Those activities help send messages in a more direct line and calm the person suffering from this disorder so they can function. This diet is absolutely essential to their well being, so families need to have sensory things in place at home for their children with this disorder and most importantly, it MUST be written into the child's individualized education plan ( IEP) to be exercised at different points during the day. This may not keep away every meltdown but it will certainly keep away most. In my home, I covered a balance ball with 3 different textures of fabric, so my son had the benefit of not only being able to bounce on the ball, but the access to different textures to feel as well. I also have a mini trampoline set up for him. This is all part of my living room decor. When things get too much for him, he just walks over to that spot and starts bouncing. He knows how to self regulate at the age of 6, but more importantly he has the resources he needs to self regulate, right there in our front room. He can do this without having to leave the rest of the family, it has simply become part of our lives! I once had someone text me who was in a home with a child that has not been diagnosed but most likely should have been. I was told that everyone was miserable around the child because he was melting down constantly and would not stop screaming. I texted back and said, "Go to the kitchen , NOW! Find a bag of dried out beans and pour it into the nearest big container and put it on the floor in front of him!" It was done, and it calmed him within minutes. I texted back to see how he was doing 30 minutes later. The text back stated that the child was STILL playing in the beans and he was "like a different child". He was calm and happy and he just kept playing in them. Even if you do not officially have a diagnosis for your child, you can start making a more helpful environment in your home by setting up sensory friendly activities for your child. Here is a great link about sensory diets and ideas for activities that you can set up in your home. Most kids with autism IEP's have a sensory diet written into their plan but if your child does not or if your child has frequent meltdowns at school, look at this aspect of their plan and add accordingly. We wouldn't think of depriving these children of the food they need to survive, so we can't deprive them of this. Their sensory diet, is just as important!

Wednesday, March 12, 2014

The Autism Connection....why I am here.

Autism. The numbers get crazier everyday. 1 in 88 boys are diagnosed with it, 1 in 13 is the new number I heard today, here my state of Missouri. These are the numbers we know. This does not include the children that should be diagnosed but are unable to be because of lack of knowledge or road blocks in the system that have kept them from getting the help they need. This does not include those who need help but can't because families are in denial. The questions surrounding autism, are not always, "What is it?" Trailblazers and the sheer volume of our young society getting this diagnosis have brought great awareness to this disorder. Most of our population around the globe have at least heard of it and most of us know it firsthand. This isn't something that can be hidden anymore. But once you know it or suspect it, what do you do? Early intervention is key to dealing with this disorder, and I say disorder not disability because I have seen some amazingly able beings that happen to be autistic. My son's abilities frequently blow my mind, but the every day things he can't do but should be able to do for his age, are heartbreaking. I was fortunate enough to attend a meeting today to help the disabled in my area. After the meeting, a few of us stayed to go into depth about Autism. The questioned was posed. " How do we educate our community on how to navigate the special education system to help our kids, without alienating the school district and making it impossible for others who follow us?" This... Is no small question. Though the school systems sometimes are dreadful and we hear horror stories on the news and even from other mothers whose children have experienced horrific events through their school districts, in general the people working in special education are in it not for money, they are in it to make a difference. They are there because they understand it, and most of them have family members who are effected with a disability. Their limitations come through funding, and the services are only as good as the written individualized education plan ( IEP) . If you as a parent can't or don't get a good IEP in place, then everyone involved, not just your kid is at a disadvantage. Therapists and teachers follow the IEP, and though most do go above and beyond, they still have to follow what is written. That is your plan for your child, it is also the unit by which progress is measured through the school district. Since I moved back in July for personal reasons, I have been in conversation with many mothers all who have a similar story. There is an Autism connection. Most of them suspect and know in their hearts, but have hit road blocks with the system and don't know what to do for their kids. I decided, there is something I can do. I decided to write this blog. On it, I will start with basic things like stories of how I navigated the system with my little boy and how I'm still navigating. I'm planning on interviewing different people and posting those interviews so you, as a viewer can see what has worked with their families. Hopefully, even interviews with therapists. I'm going to tackle everything from sensory activities to do at home with your child to what to do when the evaluations come back as "OK" when you know NOTHING is "OK". This blog will morph frequently, and in no way is it intended to tell you how to live your life with your child with Autism, but it is here to share stories of what has worked with my family and with others and you can take that information and apply it as you feel best. Autism can make everyone, those who are diagnosed and those who are effected by that diagnosis, feel like they are all alone. The more people I meet, the more I break away from silence and speak candidly, the more I learn... We ALL have an "Autism Connection".