Wednesday, April 10, 2013
Sometimes people wonder why I have a home team. I am pretty sure my neighbors may think I am a drug dealer with all of the cars that come and go from my house in the evenings and on the weekends. Why do I need "aides" or "helpers"? Why can't I just take care of my boys myself? There are about a million reasons why I have a home team, so I am hoping to share a few of those with the world. When Brady was first diagnosed we ran a full in-home ABA program for his primary education. I hired two young ladies to do ABA 5 days a week with him in our home. One of those ladies...5-1/2 years later...is still on our team. The other young woman is doing great things as well, I have no doubt. My boys and I are INSANELY FORTUNATE to have the most amazing home team possible. I now have a total of 6 gals that work with Brady and Ty. Four of them have been a part of our team and our lives for several years, and just this year I added two new ladies to our team. When I starting sending my boys to Helping Hands full time for their primary education and therapies, I wondered what road our home team would take. We still do an ABA home program through our consultant that comes out from the boys school. But it turns out there is so much more than ABA that my home team can do for my boys. Things don't come naturally to my boys like they do to typically developing children. They have to be taught nearly everything. When it comes to meal time, my boys need to be assisted and taught how to use a spoon or a fork, or how to drink from an open cup. They need to be rewarded for sitting at the table for a meal so that they stay in their seat and actually eat their food. When it is time for a bath, we have to teach the boys step by step how to wash their hair, their bodies, dry themselves off independently, dress themselves and brush their teeth. Nothing comes easy to Brady and Ty...it is all hard work and it takes a hard working team to help them conquer these new skills and over time become independent in doing them. Our home team assists me in taking the boys to public places that they greatly enjoy - the Zoo, COSI, Buckeye Bounce, swimming pools, Zoombezi Bay, Recreations Outlet - and keep them safe and show them how to play appropriately. Even a trip to the mall to get fitted for new shoes requires a second pair of hands to keep my boys safe and make it a productive trip. Most kids can come home from school and play for the evening, but it isn't that easy for my boys. They only have a few "toys" they will independently seek out for appropriate play. We have an entire playroom full of amazing toys, but without the facilitation from myself or an aide, Brady and Ty don't know what to do with them. They can be independent with puzzles, their iPads, coloring and stickers. They also seek out gross motor sensory toys like the trampoline, therapy ball and swing. But to help them to grow in their play choices and play games or partake in any type of pretend play, adult help is absolutely necessary. My boys don't come home from school and ask if they can go outside to play with friends. My boys need help. My boys need help playing, they need help eating, they need help bathing, they need help growing. And my home team is the way I can make that happen. I feel very fortunate that my boys got the funding they have at such an early age to let me do that. I am fortunate to work on another family's home team myself for the last 2 years (that is a blog for another day in itself). I believe I know the keys to running a consistent and successful home team because I have found the most amazing team members and then I am sure to keep hold of them for as long as they will have us!
Monday, April 8, 2013
"Why won't he play with me?" This is a question I was asked by a little boy tonight at the playground, and it isn't the first time a child has asked me this about Brady (or Ty). Every time it breaks my heart a little more. Brady is 7 years old now. He doesn't have a friend. He doesn't even know what a friend is. He has never wanted to play with another child, and often resists their attempts to play with him if they try. He doesn't reciprocate another child's greetings. He doesn't try to join in their games. He doesn't want to ride bikes with the kids next door. He doesn't know the names of his classmates or try to play with them. He doesn't talk about who he played with today or who he likes or doesn't like. "Why won't he play with me?" Because he doesn't know how. He doesn't know he should or that he could. He doesn't know what fun it is to have a friend. He doesn't know what is expected of playing together or of being a friend. Making friends, playing with other kids, being social...these things don't come naturally like they do to typically developing children. They don't even come as easily to him as they do to some children with autism. Social interactions are definitely the area where autism affects Brady most. And as a Mom, it breaks my heart that he can't seem to progress socially. It isn't for lack of trying on my part or on his therapy team's part. Brady has been in typical preschool, special needs school including peers, he has participated in typical sports and special needs sports, he took place in social groups and many other groups to promote social engagement with peers. It just hasn't happened for him. And when there is zero desire from the child...its an almost impossible skill to teach. It takes incredible prompting just to get Brady to say hello back to a peer, and even more prompting to get him take a turn with them in a game or sport. I can't help sometimes but think about what he is missing out on. I remember my early school days and my first few friends and what those friendships meant to me. I remember playing at recess with them, sitting together at lunch, playing softball, having those first sleepovers...these are all experiences my precious boy is missing out on. This is the area where I find it most difficult to stay positive and keep hope alive. The one silver lining is that I have such great friends myself who have kids who just keep trying with Brady and never give up. Thank you Noah & Grace & Dylan!!! If your child wants to play with a child on the spectrum, and the play isn't reciprocated, talk to the parent about what could be done to best support a relationship between the children. Even if you aren't successful, your attempt and support will mean the world to the family. A friend gave me a great wish of encouragement this evening and she said, "I also struggle with this but I hope that one day you will see the same progress with social play you have seen with other areas, and you'll be able to mark this day as a place on your journey in how far you have come." I pray and hope she is right and that both of my boys see that day :)
Sunday, April 7, 2013
For most families, I would guess that going out to eat is a fairly easy decision. For families affected by autism it is anything but. I know many families with autism who don't even consider going out to a restaurant because the risk is so great. There are so many factors that make eating out a stressful experience for our kiddos. Here are just a few: 1) Will the restaurant have one of the 5 foods my child eats? Will it look familiar, smell familiar, be the right texture like he is used to so that he will actually eat? I will write a blog during the next week about the picky eaters that many of our kiddos with ASD (Autism Spectrum Disorder) are that will better explain this. 2) Will the restaurant have a menu free of allergens my child cannot tolerate? Many of our kids have severe food allergies such as peanut or egg or wheat. Other families have chosen a GFCF (Gluten Free Casein Free) diet to benefit their child. These dietary restrictions are difficult to accommodate in most restaurants. My boys spent several years on a GFCF diet and Brady has some mild food allergies, so I get just how hard this can be on the family. So, if you see a family bring food of their own for a child, don't judge please. The child may not be able or willing to eat what is on the menu but still needs the social experience of eating out to be successful in this world. 3) Will there be a wait to be seated at the restaurant? Many of our kids have receptive language delays, meaning they don't understand the concept of waiting. Once they are at the restaurant they expect to eat, and they don't understand why they have to wait and may have a total meltdown over this concept. 4) What type of setting is the restaurant? Will there be a booth available so that I can make sure my child stays seated and doesn't jump up and down or attempt to run around the restaurant? I am constantly worried we are going to bother other people eating their meal when we are at a restaurant. Maybe I worry too much, but we have had a few altercations that have caused me to feel this way. 5) What will the noise level be like at the restaurant? For my boys, I don't want it to be too loud because they will want to cover their ears to cancel some of the noise out and won't enjoys themselves. I also don't want it to be too quiet because the boys will usually verbally script or vocally stim in this environment. (Vocal stimming is when a person uses their vocal chords to produce repetitive sounds to self-regulate emotions and to process information. Vocal stims can sound like words, noise, songs, echos, sound effects, gibberish, talking, laughing, hums, animal sounds, and many other forms.) A little bit of noise helps to cover that up to other patrons and keeps us from getting called out. These are just a few of the questions I have to consider when making the decision if my family can handle eating out at a restaurant. I mentioned that we have had a few altercations, and we have had some good and some bad that come to mind. The worst experience I remember was at a Raising Cane's, but the staff of the restaurant was fabulous and in no way was the restaurant the problem. Brady, myself and two of our aides were eating a meal there and Brady was in a great mood. He was sitting in a booth next to me, up on his knees, eating his chicken, and being very well behaved. Then he began to cough and choke a little on a bite. Because of Brady's limited understanding of social situations, he did not understand that he should cover his mouth or face his body toward our table. Instead, he turned his body toward the back of our booth which backed up to another booth where a 50-60ish year-old couple was eating. The man at the table started to yell at Brady to stop coughing in his wife's hair and stood up to yell at out table to stop him and teach him some manners. To make a long story short, he and his wife moves across the restaurant where they could be at a table far from us...which was fine by me. My aide stood up for Brady and yelled back at the man (thanks Ashley) as I made sure Brady was okay and no longer choking, and a restaurant employee came to check up on Brady as well. I was very bothered and upset by this incident, but this is one of several incidents we have had when eating out. We have also had some amazing experiences such as the one we had at a Red Robin in December. Here was what I wrote the night of our visit: This evening we were at the Red Robin on Gemini in Columbus, OH. I was dining with my 7-yr-old son who has autism and he saw a certain cartoon come on one of the TV's that he is terrified of. As he ran from our table and covered his eyes crying and saying, "tv off" 4 staff members attended to us immediately. They blocked my sons view of the TV until they could locate the remote to turn it off. They immediately offered to make him a milkshake or bring him some fries, anything to make him happy. They also left that TV off the entire duration of our meal. Sometimes dining with a child with special needs can be difficult or embarrassing for the family, but the staff of this Red Robin gave my son an incredible experience when it could have been horrific. They catered to us and could not have been more compassionate and accommodating. I will visit this Red Robin frequently and will encourage all of our friends to do the same. Thank-you for putting a smile on my son's face and treating is with the up most respect!!! Since that night when we have visited that Red Robin, they recognize Brady and I and always welcome us with open arms and accommodate by changing the TV stations to all sports as soon as we arrive. As difficult as autism can be for a child and for the family, it is always heart warming when we can share a story like this one :)
Thursday, April 4, 2013
Tonight's blog is "borrowed". This is written by Ashley, a very important person in my family's life. I hired Ashley in August 2007 and she has spent the last 5-1/2 years as an ABA therapist and aide to first Brady and then to both Brady and Ty. Be prepared for tears and laughter...every word of this is true!!! Thanks Ashley for your dedication :) Autism is: HARD. I'll say it again, autism is hard. You probably see all the adorable pictures I put up of my adorable kiddos I work with. And read my statuses bragging about their latest accomplishments, but it's not all roses and rainbows. Autism is hard. It's hard for the parents, and caregivers, therapists, aides, and teachers. It's hard to remember what trigger words will set a kid off onto a 20 minute tantrum, or that even though it's sunny and warm out, we haven't done any at-home programs in a week so we need to stay inside and 'work.' It's hard when plans change at the last minute, and the kids don't understand. It's hard when that one special toy is missing and even though you are going to be extremely late for wherever it is your going you can't leave the house until the toy is located. It's hard when it's raining and cold outside and your kiddo FINALLY uses appropriate language to ask to go outside and you have to try to explain to him that it's not a choice right now. It's hard not to be discouraged when the same goal is on the IEP for the THIRD STRAIGHT school year. Autism is hard. It's hard for the kids it affects. They can't communicate how they want to, they work 'full time jobs' at 2 years old, their entire lives are scheduled to the minute with therapies, doctors appointments, school and at home programming. Autism is hard for the siblings, when they spend their lives in speech therapy waiting rooms, or never get to pick what shows to watch on tv. It's hard to watch people stare at their little sister or brother in public and whisper with disapproving looks on their faces. Autism is DEPRESSING. I like to think I am a pretty positive person. But sometimes it gets to me. When I watch the kids I love so much struggle with tasks that most of us take for granted. It's depressing to watch them cry because they are so frustrated with their homework, or OT work. It's depressing to watch them struggle to find the words they need to get their point across. It's depressing to watch them have a meltdown because the wrong show is on television, the room is too loud, you didn't understand what they were asking for. It's depressing to watch a peer approach them, desperate to have a playmate and the kiddo with autism not even realize they were just asked to play. It's even more depressing to watch the kiddo with autism approach a peer because they desperately want to play and get rejected by that peer. It's depressing to spend time with an NT kid and realize JUST how far behind you really are. BUT, more importantly, Autism is FUN and FUNNY. I laugh daily at work. My kiddos are silly and goofy and smile all the time. They do funny things, and most of what they say is downright HILARIOUS. And autism is fun. I get to go to work and play with messy things like shaving cream, and paint, sand, and cornstarch and water. We get to go places like COSI, the zoo, the pool, the beach and SESAME PLACE. We go the park, and jump on trampolines. We watch movies, and have tickle fights. We color, sing, ride bikes and PLAY. Autism is INSPIRING. As hard and depressing as autism is some days, it's inspiring every day. Like when that IEP goal has been there for 3 straight years and you finally read that beautiful word: "MASTERED" Or when something has caused him so much anxiety for well over a year, and one day, it just goes away. Like the days that you say the same thing you have said every day of their lives for 4 years and they suddenly get it, and respond appropriately. Like when after weeks/months of going to the bathroom on a schedule, and begging him to just go a little bit, then getting peed all over he goes into the bathroom himself, takes care of business and doesn't even need you anymore. Like when they FINALLY put that new food in their mouths and they LIKE it. Like when your are driving down the street and he spontaneously shouts out where he wants you stop (and you practically wreck the car and do a possible illegal u-turn to get him there.) Like when the peer comes up to them on recess and this time he finally notices the peer, and follows them to the swings or slide. Like when after 3 years of practice, trying, arguing and crying he gets on his 2 wheeler and takes off down the street by himself. Like when at age 4 years, 9 months and 24 days he speaks his first word and it's the most beautiful sound you've ever heard. Autism is LOVE. Unconditionally. I know that no matter how hard I push my kiddos, how many times I've made them cry, they love me. I see it in their eyes. I see it on their face when I walk in the door, and I feel it when they give me big hugs. I also know they could never love me as much as I love them. I love them when they've bitten me so hard they've drawn blood, or left a permanent scar. I love them when they are having a 20 minute meltdown, or refusing to work. I love them when I have to get up at 5am with them, or attend a nasty IEP meeting. I love them no matter how much it costs to replace my phone that they just threw across the floor :) and I will love them if they recover, or make 0 progress from this day forward. And if you step back and read this, you will realize that kids with autism aren't any different than kids without autism. Think of any kid you know, and they will be hard, depressing, funny and inspiring at times. Autism may just take these things to the extreme. Autism. Different. Not Less.
Wednesday, April 3, 2013
Often when I tell someone my son has autism, the first thing they ask is, "How severe is he?" I get this from the general public as well as from other autism families. This is not a question I like to hear, and it is not one that I feel I can answer. To me, this question is a loaded one and there is no clear answer. I think anyone who works in the autism field would agree with me that it isn't as simple as saying my son is "severe" or that he is "high functioning". Here are the facts about my boys. Both Brady and Ty are very affectionate and loving boys. They do not pull away from touch, they prefer touch and hugs and squeezes and plenty of movement. Some people would think these statements alone mean they are not "severe" but instead are "high functioning". Neither Brady or Ty have a ton of behaviors, but they have a few as almost all kids on the spectrum do. They are not at all aggressive or self injurious, but they can be hyper. Brady jumps up and down a lot and he does scripting. (Some children with autism will repeat lines of a movie or T.V. show over and over or even conversations they have overheard. This is called delayed echolalia or scripting. Scripting is a self-stimulating behavior. The child’s speech may not sound clear or loud enough for you to understand what he is saying while he is scripting or it maybe articulated clearly.) Ty flaps and does some verbal stimming and may cover his ears if something is too loud to him. Ty has also been known to bite, usually just his shirt or a close by object, but on a few occasions he has bitten another person when he is overly stimulated and excited. These additional statements would leave many people to think Brady and Ty are not "severe". But when we talk about the communication and socialization areas it is a totally different story. Brady and Ty both spent years being nonverbal, and even when their language did come it was slowly but surely. Both boys have apraxic speech and speak using phrases and utterances well below their age levels. They have significant delays in their receptive language as well, meaning they do not understand our words nearly like they should. This inhibits their abilities to sometimes follow the simplest of directions. At age 7 I can easily say that Brady's biggest challenge in life are his social skills. He does not have any desire to have social interactions with peers and even requires prompting to interact appropriately with adults at times. His social abilities are severely impaired, more so than any other skill set. Ty lacks in social skills as well, including eye contact and greetings and peer interactions. So if someone were rating my boys on these statements then they likely would say both boys are "severe". I don't think you can label a child simply by saying they are "high functioning" or they are "severe" in this world of autism. You need to ask more questions and get to know how autism has affected the individual person. So...do me a favor...don't ask that question. Instead, ask "How does autism affect him? What do I need to know to interact with him?" That will get you EVERYWHERE and you will know the child much better with the answer I will give than you would with a one word label :)