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Description:The Autism Rowboat - My Blog The Autism Rowboat My Blog Quentin Books Links & Info Other Autism Blogs Avon Contact Row, row, row your boat Quentin's Gut 7/23/2016 1 Comment Imagine your gut is a small

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The Autism Rowboat - My Blog The Autism Rowboat My Blog Quentin Books Links & Info Other Autism Blogs Avon Contact Row, row, row your boat Quentin's Gut 7/23/2016 1 Comment Imagine your gut is a small town. Let’s say there are 3 gas stations, 5 restaurants, 2 grocery stores, 1 liquor store, 3 parks, 2 gift shops, 3 factories, 1 movie theater, 6 bars and 6 churches. It is a nice town and you have a low crime rate and low unemployment. Let’s imagine another town. This town has 1 gas station, 1 restaurant, 1 grocery store, 4 liquor stores, 1 park, 0 gift shops, 1 factory, 0 movie theaters, 8 bars and 3 churches. It is not as nice as the first town. Crime rate and unemployment are higher. Although you will find most of the same things in both towns, the ratios in the second town are not so good. Quentin’s gut is the second town. There are over 400 bacterial species in the intestines. Bacteria itself isn’t bad. It’s all about having the right balance. For example, bars aren’t a bad thing to have in a town, but you don’t want a town filled with only bars...where would you buy your groceries or fill up your car? We have tried several things to get Quentin’s gut more balanced. The first was a biofilm protocol. This involved 3 supplements, apple cider vinegar and honey to be given at three separate times of the day. Quentin hated it. I hated it. We didn’t see any positive results. Our current doctor said that a biofilm protocol can be a useful thing, but in Quentin’s case this wasn’t the right first step. This would be like planting trees and flowers along Main Street to make it look nice when half the shops are boarded up. We put Quentin on Vancomycin (antibiotic medication), Ivermectin (antiparasitic medication), Fluconazole (antifungal medication) and Gentamicin (antibiotic medication). Not all at once of course. The point of these is to get rid of any parasites and the excess of certain types of fungus and bacteria. Some of these did cause a definite die-off effect. This is both good and bad. Good, because it means it is working. Bad because it means that Quentin is crabby and uncomfortable. As in our town, getting rid of the unwanted element is only half the assignment. If you get rid of the bad but don’t replace it with something good, bad stuff will just come back. The best way to encourage good bacterial growth in the gut is probiotics. You can get probiotic supplements. It can be difficult to get actual live cultures even when you are buying from a reputable source. The best way to get probiotics is through fermented foods and drinks like Kefir, Yogurt, Kombucha, Kevita, Sauerkraut, or Kimchi. Luckily Quentin will eat these things. I have had some success making homemade coconut milk yogurt and sauerkraut. Our local Piggly Wiggly just started carrying Kombucha and Kimchi! The whole endeavor is a balancing act. Not just a simple walk down the balance beam. More like a walk down the balance beam after 5 shots of vodka. There is a lot of trial and error and over correcting for mistakes. And sometimes falling down. But we get back up and ferment some cabbage and try again. ? 1 Comment Busy 5/20/2016 2 Comments I haven’t posted for a while because I have been busy. I have been busy taking Quentin to appointments. We drive an hour and a half to Serenity Health Care to see Dr. Brown, who is directing Quentin’s biomedical treatments. We drive an hour to Madison to the Waisman Center twice a year for the Cerebral Palsy clinic and the Autism Clinic. We drove to Madison recently to the American Family Children’s Hospital so Quentin could get Botox injections in his left hand to help with his CP. I have been busy making healthy food. We are trying to eat healthier as a family. I have borrowed several cookbooks from the library including, The Forks Over Knives Cookbook and The Homemade Pantry, in an attempt to include more vegetables and fewer processed foods in our diet. It is going well, but it takes time. I have been busy cleaning up diaper messes. Sometimes things are a little off in Quentin's gut and he still puts his hand in his diaper to investigate. Then, he touches everything around him. Sometimes I change my outfit, his outfit and his sheets…and give him a bath…and spray air freshener. I have been busy painting several items like the kids' table and chairs. I have been busy deciding if Quentin should repeat 4K (to have enough time for his 30 hours of in home therapy) or move on to 5K (so he can stay with his classmates). We opted for 5K and as much in home therapy as we can fit in around that. I have been busy baking and frosting cakes for the Brodhead Veterinary Medical Center open house last weekend. My husband is a partner there and since I do cakes for the birthdays, they asked me to do cakes for the open house. I have been busy trying to teach a puppy to go potty outside and not chew on toys and shoes and paper and little boys. I have been busy trying to teach a couple of boys that puppies don’t like to be kicked or carried around or have their ears pulled. I have been busy with all the usual chores I do…cleaning, making meals, kissing owies, doing laundry, mowing the lawn and driving kids to and from school. I have also been busy making some of my own clothes, listening to Phryne Fisher mysteries and developing a Doctor Who obsession. So it’s not all work and no play. I will probably be busy this summer too. I will be busy taking kids to summer school, going to Michigan and New Jersey on vacation and working on potty training Quentin, but I’ll try to do a better job of posting on my blog. Have a great summer! 2 Comments Holy Cow 3/14/2016 2 Comments All children tend to repeat what they hear from the people around them or from the shows they watch. It is part of learning to speak. It can be both annoying and hilarious. Some kids take this to the extreme. Echolalia is the repetition of words, phrases and sounds and is often a symptom of autism. “Echo” obviously means echo and “lalia” means speech. It is literally echo speech. Click on the links below for more info from people who know more than me. Since autistic brains work differently than typical brains, many kids with autism have communication difficulties. Sometimes it is easier for them to repeat things they have heard rather than come up with their own words. I have even read about a kid who use phrases from Disney movies to communicate. Quentin often uses stock words or phrases to communicate. If he sings “Twinkle twinkle little star” he is telling you that he wants you to sit with him and rock him and sing twinkle twinkle little star. If he says “No, Quentin” he is telling you that he knows he is doing something he shouldn’t do and that you are probably about to tell him to stop. If you say "Hi Quentin," he will reply "Hi Quentin". Because that is what you say when you greet someone. He also repeats things that seem completely out of context. He will say “stand up or fall down.” I imagine he heard something like this during occupational therapy, but he has latched on to it and I don’t know what he means to tell us. At school he has been known to say “gum”. He has never had gum. We don’t really chew gum at our house. He doesn’t say it at home; only at school. Sometimes Quentin will repeat part of something that someone just said. I believe this is his way of letting us know that he is listening. He might not understand everything we just said, but he heard everything we just said. He is trying to get be part of the conversation. One of his favorite things to say is “Holy cow”. He loves it when it is repeated back to him so he can say it again. It becomes a game. Click here to watch the game! 2 Comments Turn the Other Cheek 2/18/2016 0 Comments Jesus said that when someone strikes you on your right cheek, turn the other one to him as well. Although I generally think Jesus gave out some pretty good advice, this is one instance where I am looking for a second opinion. Quentin likes to hit. He hits his head on things. He kicks things with his feet. He pounds his chest with his hand. He gives high fives. He hits the table with his palm or fist. He also likes to strike people on the cheek. This is a problem. I have visited a LOT of websites looking for advice. Connect Therapy has "7 Tips for Disciplining Children with Autism." Autism Learning Felt tells "How to Stop Your Autistic Child from Hitting." Autism Speaks has "Five Tips That Helped Improve My Child's Behavior." The first thing they all say is to find out why the child is hitting. Often, non-verbal children or those who have difficulty communicating will strike out in frustration because they aren’t being understood and they don’t know how to get what they want. For example, a child may hit his parents every time the parents put his shoes on. In this scenario, the child doesn’t like wearing shoes and doesn’t have the words to express this. This does not seem to be the case for Quentin. Although he actually doesn’t like wearing his shoes or his socks, he isn’t hitting when he is mad or frustrated. He isn’t hitting because he is not getting what he wants. When he hits me, he is usually smiling at me. It seems like when Quentin hits, he is saying “I like you. We are having fun. You are close enough for me to touch, so I will hit your face and see what you do next. Will you shout? I like noises. Will you make a funny face? That makes me laugh. I get so much sensory feedback when I hit things. Isn’t this fun???” Quentin’s therapists at home along with his aide, teacher and therapists at school are trying to cope with this. The new experiment is to say “no hitting” and show him a card with a hand hitting and a line through it. This is so he will hear and see what we are telling him. When he hits me, I end the activity if I can. I say “no hitting” and leave. The problem is that he will hit me when I am carrying him out to the van or when I am zipping up his coat. I can’t really stop doing those things. I just say “no hitting” and hope he understands. I do believe this will stop eventually. He used to cry every time the car stopped at a red light. Now he can handle the dozen or so traffic lights along Park St. in Madison without a single tear. He used to throw every toy in his reach without playing with anything. Now he plays with the toys before he throws them. He will learn to stop hitting the people he loves most. In the meantime…love hurts. 0 Comments Organized Chaos 2/9/2016 0 Comments I love to make lists and spreadsheets and binders. I like rearranging things and getting rid of things that don’t spark joy. I usually plan things well in advance so that there are no unpleasant surprises. For me this is a good coping strategy which helps me maintain my sanity. I want to share some of my current organizational systems which are working well for me. Tracking Calendar: When the twins first came home from the NICU I kept track of how much they slept, how much they ate as well as what came out the other end. Those of you with typical kids might think that seems excessive, but I found it very helpful and reassuring. There are still things that I track for Quentin: BM frequency and consistency, seizures, medication changes, illness or major incident. I have made my own calendar in the past, but finally realized that I can just jot things down in the squares of a regular weekly or monthly calendar that I can get for free from the bank. Binders: I have put the calendar in a binder that also contains contacts, phone logs, coupons, gift cards and any other papers I need to keep track of or take action on in the near future. I have separate binders for school stuff (IEP, class list, progress reports), Medical (after visit summaries, reports from specialists) and Resources & Info (Quentin’s trust, product info, government correspondence, transition information, etc.). The Family Calendar: Even though my husband and I both use Google Calendars, we never seem to know what the other has planned. I decided to make a calendar for the kitchen so we could both see what was going on that week. I used a magnetic chalkboard so I can write in the unusual events and just put up a magnet for reoccurring events. I also made a daily pictorial calendar for the boys at the bottom of the board. Quentin is not using it yet, but his brothers remind me every morning that I need to “do the calendar”. I used some pictures I had taken of people and places and other pictures are free online clip art. The boys really like knowing what is going to happen next. I like knowing what is going to happen next too. In spite of all my attempts to organize and control my life, I have learned to make all my plans with the knowledge that they might change. 0 Comments Quentin Can 1/6/2016 1 Comment Quentin can’t walk. Quentin can roll. Quentin can commando crawl. Quentin can move around in his Kidwalk Gait Trainer which we call his bike. Quentin can drive his Permobil Power Wheelchair which we call his car. Quentin can stand up with someone supporting his hips for balance, while he bears his full weight. Quentin can’t eat independently. Quentin can feed himself finger food. Quentin can hold a handled sippy cup to drink. Quentin can take a fork with food on it and eat the food and return the fork. Quentin can tell you which foods he wants to eat. Quentin can say all done when he is done with a meal. Quentin can’t play with toys like a typical 4-year old. Quentin can point at pictures in books. Quentin can play with apps on his iPad. Quentin can throw the ball to play catch with a person or a dog. Quentin can color and use a glue stick. Quentin can tell his therapists and aide which toys he wants to play with. Quentin can use his left hand to hold a toy while he moves it around with the right hand. Quentin can’t do many things his classmates in 4K can do. Quentin can spend his day in class with his peers, except when he needs to leave for therapy. Quentin can give his classmates a high five. Quentin can listen to his teacher read stories. Quentin can join his class when they sing songs. Quentin can knock on the window to the front office everyday so that the ladies who work there will wave at him. Quentin can be popular with his teachers and peers, not in spite of his differences, but because of them. Quentin is different, not less. 1 Comment I Am That Mom 12/15/2015 2 Comments So, you are sitting in church on Sunday feeling very happy and holy when they clamber into the pew in front of you. That family. The one with the noisy kids. You feel a little less happy and have some not so holy thoughts. You know they don't mean to be so distracting but it is hard to pay attention to anything with them sitting right in front of you. You wish they would sit someplace else so you can pray in peace. If you go to church, this has probably been you at some point. It was me. Now, I am that mom with the noisy kids. Once we complete our disorderly procession down the aisle, we usually land in the front pew. Many people with young children sit in the back in case they need to make a quick escape. We hope that our kids will pay more attention and behave better if they can see and hear everything that is going on. Sometimes this seems to work. Other times, it just ensures that everyone else can see and hear our kids being naughty. Quentin's brothers, Eli and Oliver, like to pick up the hymnals. They want to hold them and flip through the pages. They will inevitably drop them on the floor once the singing has stopped and all is quiet. I am certain that someday they will learn to hold on to them without dropping them. As of last Sunday, it is still not that day. Quentin has been doing a really good job of using more language to let us know what he wants. Most of the time this is great, but not during Mass. He tells when he wants "up" and won't stop till he gets picked up. He also enjoys repeating words and phrases he hears. Fortunately they are usually church related things like "Amen", "Hallelujah" and "Holy Spirit". It's more a problem of volume and timing. He likes to make these holy proclamations whenever it is quiet. He also just makes random noises a lot because the acoustics in church are so much fun. We can cover his mouth, but as you probably know, it is still possible to make noise with a hand over your mouth. We tell him to be quiet. Although I think he knows what that means, he ignores these requests. I can refuse to hold him and make him sit on the pew, but this usually just results in an increase of volume. If he gets especially loud, we do take him to the back and I sit with him on the stairs. I can't do this every time he makes too much noise though or I would spend an entire hour every Sunday sitting on the stairs. I often bring a sippy cup of water in the diaper bag in case someone is thirsty. Oliver will always ask for a drink. If I don't have it, he will keep asking and start whining that he is thirsty. He wants to make sure I really truly didn't bring it before he will give up. If I do have it, we create a commotion while the sippy cup gets passed around and offered to each boy. Once I put it back in the diaper bag, someone needs it again. NOW. Eli and Oliver like to turn around to look at the people behind them. They also like to point at people they find interesting and ask me questions about them. If we aren't in the front pew, Quentin prefers to tap the people in front of us. I try to stop him, but that kid is fast and I am usually feeling groggy and distracted by something his brothers are doing. I find it difficult to listen to the readings and homily when my boys do these things. I can only imagine how distracting we can be to others. Sometimes I want to stand up and say "Sorry, this really is the best I can do." But that would only add to the distraction. The people at St. Mary Catholic Church in Durand, IL have made my noisy family feel very welcome. They tell me how good and cute my boys are and give me encouraging smiles. They tell me that they remember when their kids were little. As they return to their pews after communion, they will smile and give a little wave or even a handshake to my boys. They remember that Jesus said "Let the little children come to me, and do not stop them; for it is to such as these that the kingdom of heaven belongs." 2 Comments The Diet 11/27/2015 1 Comment Quentin has been on a gluten free/casein free diet for a little over a year now. We went soy free as well about 7 months ago at the advice of a biomedical doctor. Some parts of this diet have been challenging, but it was not as difficult as I had feared. I think there are three reasons that going Gluten Free/Casein Free/Soy Free (GFCFSF) has been easier for me and Quentin than it is for many people. The first reason is that Quentin is not a picky eater. There are some 4 year olds who will only eat a certain brand of cereal or only want to have chicken nuggets or hot dogs for every meal. Luckily, Quentin isn’t that boy. He loves food - all food. There are a few textures he doesn’t care for, but he really likes a wide variety of foods. His appetite is impressive. When he is hungry he can eat as much as me. So switching to almond milk and corn pasta and coconut milk yogurt was no big deal to him. The second reason is that we tend to make a lot of things from scratch anyway. Sure, we have frozen pizza and mac n cheese in a box like everyone else. The difference is that we bake our own bread and cook meals from actual ingredients more often than not. I have even made mustard, coffee creamer, and sauerkraut. We can applesauce, peaches, chicken broth and tomato sauce. So, for us to make special meals for Quentin with different ingredients is not as difficult as it is for people who rely heavily on takeout and packaged foods. The final reason is that I am not afraid to try a new recipe, or substitute ingredients in a recipe or just make something up if I don’t have a recipe. I was not always this way. My friend Beth is responsible for this. I have learned that most other people don’t cook in such a haphazard fashion. Most people would be sure to have the right ingredients for the recipes they are going to make that week; especially if they have a child with a special diet. I tend to keep a lot of ingredients on hand…just in case. Most people would start preparing a meal well in advance of meal time. At our house, meal time is often a pretty flexible thing. Sometimes I realize that Quentin should eat soon and I don’t really have anything made. So I might grab a can of chicken meat or kidney beans off the pantry shelf, heat it up with some taco seasoning (which I made myself), boil some rice and melt GFCFSF cheese product on it all and…voila! A meal! I want to share some of Quentin’s favorite products and recipes in case you would like to try the diet or just try something new. Pizza - using the crust recipe from Cooking for Isaiah by Silvana Nardone. Autumn Muffins from Allergy Proof Recipes for Kids by Leslie Hammond and Lynne Marie Rominger Don Baker’s Pancakes, Salmon Burgers, and Coconut Quick Bread from Special Diets for Special Kids by Lisa Lewis, Ph.D. Babycakes NYC Chocolate Chip Cookies Sam Mills Pasta for Kids Daiya Cheddar Style Block Enjoy Life Bars Sesmark Savory Rice Thins (before we went Soy Free) Fruit & Nut Bars 1 Comment In My Shoes 11/11/2015 4 Comments I went for a walk this weekend. It was about a mile and it made me think of that expression – don’t judge a man till you have walked a mile in his shoes. So this post will give you the chance to walk a typical day in my shoes. 6:00 am – Eli (Quentin’s twin brother) and Oliver (their 3 year old brother) come into the bedroom to wake me and my husband, Jason. Partly because he is awesome and partly because he knows he won’t get any more sleep, Jason gets up. I hide under the covers and pretend to be asleep for a while longer. 6:45 am - I am downstairs to find some coffee. Jason makes the breakfast, while I begin the simple task of preparing Quentin’s meds. (Jason has told me that if I died without leaving a list, he would have no idea how much of anything to give him). I get 3 different meds from the fridge, the shoebox sized container of meds from the cupboard, 4 syringes, a bowl and a spoon. Then I go back to the fridge to get the applesauce that I never remember to get the first time I am in there. Quentin gets Kepra, Prilosec, Topamax, and Diflucan in the syringes. Then applesauce goes in a bowl with 4 drops vitamin D, liquid multivitamin, one scoop of TriEnza powder and probiotics. 7:00 am - Breakfast is on the table and if we forget to pray, Oliver will remind us. Quentin has usually banged his head on the table at some point by now, so he is wearing his safety helmet. We have started putting his glasses on with the helmet because then he can’t take them off and throw them, so he has those on too. I help Quentin eat breakfast. He can hold a sippy cup with handles and drink, but I have to be ready to grab it when he is done or he will throw it. If I load the fork or spoon and hand it to him, he will put it in his mouth. Again, if I am not paying attention, he will throw the fork when he is done. 7:50 am – Jason leaves for work. 8:00 am One of Quentin’s IDS therapists shows up and Pippin the dog alerts loudly that there is an intruder. Oliver asks what time it is, in hopes that the answer will be that it’s time for Sesame Street. It’s not. I am mean and make them play. 8:05 am – Eli asks if we can watch a show. I say no and make them play. 8:07 am – Oliver asks if we can watch a show. This goes on pretty much from first thing in the morning, until it is actually time for Sesame Street. 8:15 am – Eli, who didn’t eat breakfast, says he is hungry. I tell him he has to finish his breakfast. He insists I help feed him. 8:30 am – Oliver, who did eat breakfast, says he is hungry. I open a banana for him. 8:40 am – I try to tidy up the kitchen and have a second cup of coffee. Someone has a dirty diaper or an owie as soon as I try to do anything useful. 9:00 am – It is finally time for Sesame street, followed a half hour of Dinosaur Train. This is when I get to take a shower and have more than 2 minutes without interruption. I make phone calls, bake, take care of paperwork, tidy the house, start a load of laundry, work on my blog or just play super 2048 on my phone. 9:30 am – Quentin will usually indicate to his therapists that it is snack time. He has picture cards that he can choose and will say “snack”. I get them some snack options, and they help him eat. 11:00 am – Therapy is done. This is supposed to be lunch time, but kids have had so many blasted snacks by now that they won’t eat a proper meal. We basically have another snack. I help kids into school clothes, change diapers that need it, gather supplies for backpacks, comb hair, wipe faces, put on Quentin’s socks, braces and shoes. 11:30 am – I get 3 boys into coats then into car seats in the van. I grab my purse and 3 backpacks and we are off! (Oliver doesn’t go to school, but he likes to bring a backpack when we drop off his brothers.) 11:45 am – Unload Quentin’s “bike”, which is what we call his gait trainer and 3 boys and go line up at the Elementary School. Miss Dana, Quentin’s aide, is there to meet us. 12:00 pm – If I have any errands this is my chance to do them with only one boy. Otherwise we head home and Oliver has a nap. This is my favorite part of the day. 2:20 pm – Unfortunately Oliver is still sleeping and we need to leave soon to get the boys from school. I have to wake him up and there is always whining and crying and he doesn’t want to get up or go potty or put on his shoes or get in the van. 2:45 pm – Mrs. Richmond blows the whistle and recess is done. Miss Dana brings Quentin to the van in his “car”, which is what we call his power wheelchair. Quentin’s bike is there waiting for me to load into the van. Eli gets dismissed from his line and we all get into the van to go home. 3:00 pm – In theory, Quentin has therapy again now, but in practice this only happens occasionally because we don’t have a full staff of therapists for him yet. 3:05 pm – Oliver asks if we can watch a show. I make them play. 3:10 pm – I make popcorn. Quentin used to need popcorn every day. He isn’t quite as obsessed with it now, but I found that I now need popcorn every day. 3:15 pm – Oliver asks if we can watch a show. I tell him not yet. 3:20 pm – I sweep the floor. Eli asks if we can watch a show. I say soon. 3:30 pm – Eli asks if we can watch a show. I say yes. They fight about which show we are going to watch. I help them choose a show they both agree on. I hope that I will be able to get something done. 3:40 pm – Just as I sit down to make Avon calls, Oliver needs more milk in his sippy cup. 3:45 pm – Just as I sit down to make Avon calls, Eli pushes Oliver and there is fighting and a time out. 3:50 pm – Just as I sit down to make Avon calls, Oliver wants a banana. 4:00pm – I pour myself a rum and coke and sit down to make those Avon calls. 4:30pm – Oliver goes potty all by himself and then decides to dump the little potty all by himself, but instead of the big potty, he pours it into the base of the little potty which leaks all over and makes a big mess. I yell and clean and wash my hands twice and pour myself another drink. 4:45pm – If Quentin doesn’t have therapy, he will be done resting and want to come out and roll around on the floor and play. I put his helmet first, then close the bathroom door so he doesn’t go in and play with the potty and I put up the gate in the mudroom so he doesn’t play with the dog food. 5:00 pm – Eli and Oliver both want a snack now so I start getting supper ready. I only have to get one medication from the fridge for the evening, the big box of meds, 2 syringes, bowl, spoon and back to the fridge, because I forgot the applesauce again. 5:15 pm – The boys tell me that their movie is done, and ask for another. I say no and tell them to pick up their toys. 5:20 pm – They are fighting and not picking up their toys. 5:25 pm – Quentin is crying and I change his diaper and give him a hug. He is happier now, so he slaps me in the face. I put him back in his bed. 5:30 pm – Jason comes home from work. 5:35 pm – Jason wishes he was back at work. 6:00 pm – If there was therapy, the therapist goes home and I sit down to eat with my family. Quentin gets his helmet on because before we can pray, he is banging his head again. Quentin doesn’t want to eat anything and keeps saying “all done”. I get the seizure meds in him anyway and put him in his bed and the rest of us eat. 6:30 pm – I put the boys in their “cozies” and in nighttime diapers while Jason clears the table and loads the dishwasher. 6:45pm – Oliver is sitting under the table and I notice an unpleasant aroma and we do a diaper change. 7:00 pm – Quentin is out like a light. We turn on the TV or a movie that Jason and I want to watch. We each snuggle up with a boy. 7:05 pm – Eli wants a drink and their sippy cup is empty, so I get them more milk. 7:15 pm – Oliver wants another banana. 8:00 pm – Eli is sleeping. Oliver is talking. 9:00 pm – Bed. Finally. 4 Comments It's Like a Marathon 11/3/2015 0 Comments A couple weeks ago, I was talking on the phone with a friend who asked how things were going for Quentin with all the therapy and interventions we have been doing. I told her that we were seeing some improvements but it is slow. I used the analogy that it is a marathon not a sprint. After we got off the phone, I started thinking about that comparison. Having a child with autism is like running a marathon, but it is a little different from any other race I have run. Imagine that on the day your child was diagnosed, you were told you would be running a marathon the next day in a city you have never been to. You have not been training for a marathon. You are not even in great shape. But there’s no other option. You have to do it. When you arrive on race day, you receive no map of the course. You have only a vague idea of where the finish line is. At the starting line, you hear the gunshot and some people start running. Some sit down and cry and refuse to run. But you figure you might as well give it a try, so you jog along at a slowish pace. You come to a fork in the road and notice that people are taking different directions. Some are veering left, some right. There is no sign pointing the correct way. You just have to choose one and keep moving. When you come up against dead ends, you double back and try a different route. After what feels like hours, you realize that there are no mile markers either. You don’t know how far you have come or how close you are to the end. You have been running for a long time, but you might not be much closer to the finish line because you aren’t sure you are taking the right road. You pass many bystanders as you run. Some of them shout encouragement; others offer drinks of water. Some tell you that you are on the wrong road; others critique your running technique. Some look at you like you are crazy, others look at you with pity. At one point you notice that there are people who are walking back in the opposite direction with medals around their necks. They tell you that they made it to the end. They finished the race. Their child received an autism diagnosis just like yours. They fought until their child became the best possible version of themselves. They tell you that you are heading in the right direction. There is more than one right route. You will make it eventually. Just keep running. You might not be the fastest runner. You might make a wrong turn. But the only sure way to not finish the race is to stop running. If your child has autism and you want to talk to a parent who has been there check out TACA's parent mentor program. 0 Comments < Whois

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