What you Should Say to Autism Parents (list from Autism Island)

Here is a blog that is brand new to me. I was browing through Autism Island and found this post about 50 Things You Should Say to Autism Parents. It is so well written and I hope she doesn't mind that I have posted it here. I like this list because it is not only what someone should say to a parent with a child with autism, it is what I want someone to ask or say to me. While I appreciate firends who try to relate to me, they really can't. Sometimes they say things that are insensitive or cruel without realizing it. They would be shocked if I told them how hurt I was by their comments but I can't tell them, because it would only cause more hurtful feelings. So.. maybe this list will help. And wow, I wish I had someone who could step in and help with the kids. I can't sign my child up for classes or camps like other parents. I have to explain autism when I call for camp information. I'm usually told that the camp is unprepared to handle a child like my son. Or I am welcome to stay through the class with him. As grateful as I am for these opportunities for my son, it isn't the experiences I want for him or for me. Our entire household has to revolve around what he is capable of doing and handling. If he has therapy, we all go in the car and to the appointment. I pack activities and snacks for everyone. If he has a class, we do the same thing. His siblings haven't been able to take a class on their own without him because he can't understand why he isn't included too. He isn't content on the sidelines while his siblings do something without him. This isn't a behavior issues - this is autism. I'm sure this list applies to other special needs as well. I hope this list opens doors for many people who struggle with "what to say"... here it is... what to say to US. http://www.autism-island.com/2012/04/50-things-you-should-say-to-autism.html?m=1 So here it is, in random order, 50 things you should say to autism parents. How can I help? That must be really difficult. I think she is beautiful. How can I help stop bullying? Please don’t feel embarrassed, we understand. I know you are working around her routine, special diet, sensory needs, therapy, etc. so what works for you? You’re a great parent. Have I ever hurt your feelings talking about autism? I'm sorry. Please help me understand. "Hi _________ (child's name) how are you?" - Talk to the person with autism, not around them. No need to apologize, I understand. Can I help you with your other kids while you help your son? Can you teach me some ways to work with her? Wow, I can see why that might be a small thing for the typical kid, but for your son that is huge. Congrats! I admire how much work you've done with him. Follow your mother’s intuition. Can I join your Autism Speaks walk team? He is so smart. You know your child better than anyone, including: doctors, therapist, teachers, aides, etc. What’s the best way for my child to play with yours? I'm sure they will be great friends once they get to know each other. How should I explain autism to my kids? Let me be a shoulder to cry on. You’re a good mom, especially on your hardest days! Don't say anything. Sometimes a hug is all we need. How can I help your daughter feel more comfortable? She is uniquely wonderful! I understand parenting a child with autism can be completely different from parenting the typical child. She has made so much progress. His IEP is really working. I'm glad I've been sticking to it. I know it is hard for you to find a sitter, so how about we come over to your house after bedtime for some adult time. I don’t care if your kid turns the lights on and off a billion times, is obsessed with our washing machine, or ________ (insert random behavior here), he is welcome here any day. Who cares if she has a pacifier/blanket/stuffed animal/etc. It makes her feel more comfortable. That's all that matters. Hey, I think clothes are annoying too. We know he is a good boy, this is an overwhelming situation. Let's get your son a buddy/aide so he can participate too. "Normal" is overrated. I’m glad your family goes out in public! You need to live your life to the fullest too. Tell me about autism. Does your son have any diet restrictions? What therapy and treatments have worked for your son? I was thinking of you. I don't know much about autism and all you go through, but I know a good diet coke (or glass of wine) helps! - Here, enjoy! How well does the school accommodate your daughter? It's not your fault. I think __________ (insert child’s obsession here) is pretty cool too. Do you need a babysitter? Because I'd love to help. Let me hold that/watch them for you while you run after him. I know that every child with autism is different, tell me about yours. I’ve heard kids with autism are the hardest to potty train. What should I do to prepare for your visit? Is there anything I should put away or details I should know? I know you just want someone to talk to. So I will listen without trying to solve your problems. Really? Insurance companies don’t cover autism? I’m going to write my legislator tonight to change that! I want to talk to you about autism and I want to make sure I'm sensitive to your feelings. If I say anything that upsets you please let me know so I can understand your perspective

Special Needs Mom - a look inside

I saw this on Facebook. I think it was on Autism and Beyond.

"Autism Infection Sucks"

Gabriel rarely has an interest in writing on his own. I have a feeling that it's difficult so he doesn't have an interest in it. His letters have become more recognizable which is a nice development for him. Yesterday he brought a marker and paper into the room I was in and asked me how to spell "autism infection sucks." I'm not entirely sure why he thinks infection is apart of autism but he does so I spelled it out for him. I told him that I understand why he thinks autism sucks but I love him and I wouldn't change him. He doesn't care - he thinks autism sucks and wants to give it to a sibling or parent instead. He was even willing to put autism in strawberries in an effort to get rid of it. He knows he isn't considered neurotypical and it SUCKS. I can't blame him. I deal with asthma, depression and anxiety and it sucks too. Lane has reflux; it sucks. Andrew sarcoidosis and it sucks. Alex gets croup but he's outgrowing and it sucks too. My point is we all have something to deal with, he just got the crappiest mix of us all. I wish he didn't have to deal with the difficulty of autism. That does not take away from the fact that it SUCKS. And many days it sucks a lot. There have been many times that he has yelled about hating autism. He has sobbed in our arms about it. I know it hurts. I can tell when he's confused because he can't read social cues that it hurts him. It hurts him deeply. It's going to get more difficult to cope with these social situation as he gets older too.

There is one really cool thing about his autism that I wanted to share. It's something that other people won't notice if I forget to point it out. He has amazing visual acuity. We have said for years that Gabriel doesn't have "kid eyes" because he can notice and point out things that other children would not see. For instance, when we were walking home for the Pie Festival the other day, Gabriel noticed something on the road. He peeled a foam sticker off the road! None of us had even noticed it was there. It blended in with the scenery. I would guess that this would be a gift and a hinderance. I can imagine it's distracting to see every little detail in a scene. If the rest of the world can't see it, how do you describe it? I would imagine that all of these details would be confusing too. I hope that we are able to find a way to make this an asset for him. Somehow this has to be a big advantage over other people who can't see the same things.

Chair facelifts

When our neighbors moved in December, they offered us their outdoor chairs and plants. We moved with little furniture so we more than happy to move everything to our rather empty back deck. The four chairs had received a lot of direct sun on their front porch so the poor things were a completely different color from their original sage.
I wasn't entirely sure how to give them a makeover. I've done little projects over the years and I wanted to salvage them. Lane and I took a trip to Pier One a while ago and found new cloth for the chairs. We chose a bright fun pattern that worked with what we had on the deck.
I had to hide the purple chair covers from her because she loves all things purple. However, I think purple will receive a lot of damage from the sun
Andrew took on the first stage of chair facelift and replaced the chair covers this weekend. Eventually I want to paint the chairs black but I'm unsure when that will happen. I really like the difference already.

Have I Mentioned That I Like Free Lately?

I really like free things. Man, I really really like things that are free. Hand-me-downs are delightful. Toys that other children no longer love become favorite for my children. Freecycle has been a friend of mine for over 7 years. I've given away many things and I've gotten many in return. Today we set up a computer that was gifted to us from a fellow Freecycler. The kids were very excited as they watched us figure out a place to put it. I crossed my fingers that somene didn't give us something that was broken. All too often, Freecycle becomes a way to unload trash. This time we were lucky and grateful to receive a working computer. The kids have been playing Starfall for a few hours. The boys even taught Lane how to use the mouse and talked to her about the alphabet and numbers. Those moments when the three of them are cooperative and loving toward each other are wonderful. I realize that they really do like each other when I see them treat each other kindly and I am so glad we were able to give them each two siblings. As I thought about how grateful I am about receiving a computer for the kids, I thought about how we could afford to purchase one for them. We have the means. I just didn't want to put money into something that I was afaid wouldn't be appreciated by children. Since we have a working laptop, I couldn't justify spending the money on something when we could use the money toward something more practical. Now I hope the kids treat their "new" computer with respect so it lasts for a while.

Criss cross applesauce

Lane is learning far more than I anticipated from preschool. She loves going and has adjusted to the transition of preschool with ease
She had her first little argument with a classmate. She was upset at a friend because she was "mean" to her. Andrew suggested that Lane talk to her friend and apologize for anything that went wrong. The next day Lane told us that she said "sorry" but her friend was still mean. It's been a week and the two seem to have figured things out. The angst of toddlers is baffling
Lane talked to a baby tonight. She taught the baby how to sit criss cross applesauce. This is such a fun age with Lane and I am enjoying watching her learn new things every day

A boy and his dog

We moved to Florida with two dogs, three kids, and a fish. Our poor beta fish died a couple months ago but he made it through the move and lived with us for a few years. We still have Brody and Eddie. Brody is our 10 year old shepherd mix. Eddie is our 9 year old husky mix. We realize our sweet puppies are now elderly dogs and are enjoying their retirement. We no longer have a yard and need to walk them a few times a day. They are in the best shape they have been in since before we had children. The kids love our dogs. They love to talk about them to anyone who will listen. Even Lane will tell anyone who will listen about her two dogs. Gabriel was allowed to walk Brody to the ice cream store in Celebration tonight. At first he wanted to ask everyone we met on the sidewalk if they wanted to pet Brody. The first elderly couple didn't crack a smile. We were off to a bad start but I was able to explain to Gabriel that he didn't need to ask anyone to pet Brody but they would come up to him and ask. The second person we passed on the sidewalk stopped and thrilled Gabriel by asking to pet Brody. Thank you to the artist who was cleaning up her booth and took the time to make a 7 year old happy!! Brody scared us last summer. We thought the time has come to say good bye to him. The night we moved into our new home, we saw something disgusting on Brody's chest. It turned out to be a tumor he had eaten through and left exposed. It took a long and expensive surgery to fix it. He needed two more surgeries after that because he was able to reopen it. The vet likened the surgery to sewing wet paper together. We had to keep Brody seperate from Eddie and couldn't allow him to play at all. I covered his chest with old tshirts and changed it daily. It was quite a chore but we got through it and we are so grateful Brody is still here with us.

Roller Coasters and Golden Tickets

I have blogged about the disability card we get to use at Disney. I am starting to feel like it's the Golden Ticket. I wanted to skip down the hall ahead of the 45 minute wait when we used it last weekend. I really wanted to start singing... we've got the golden ticket and wave it around in the air. There aren't many other times when disability are a true advantage but when it comes to Disney, we've got the GOLDEN TICKET! I am giddy when I get to use it! We recently realized that Gabriel is tall enough for all of the rides. When we were at Epcot, Andrew took Gabriel on the Everest ride. Gabriel LOVED it.

Last weekend, I took Gabriel on Space Mountain while Andrew took Lane and Alex on another ride. Gabriel had no interest in the ride they were going on so I decided it was a good time to conquer Space Mountain! Gabriel made me hold his hands through the entire ride.

Shortly after, we realized that Alex is now tall enough for Space Mountain. He wanted to check it out. Within a couple months, both boys went on their first roller coasters.

I honestly think this is one of the best Space Mountain photos ever. Alex's reaction is perfect! Gabriel and Alex think Gabriel can protect Alex so he can go on Everest too. They are very sweet to each other. I think it will be a couple years before Alex meeets the height requirement for Everest though.

Flat Stanley is going home to Nebraska

I blogged about Flat Stanley coming to visit us a few months ago. I happy to report that a scrapbook has been completed and will be mailed tomorrow. I'm really proud of what our family made for our 2nd grade friend. We collected post cards, guide maps, and brochures. We also took photos of Flat Stanley hanging out with us
I bought a scrapbook, paper, and stickers and glued and cut like crazy. I showed Alex the final piece and he said that it was beautiful.
I can't to hear what our friend and his class thinks when they receive it.

Social Cues

There is a fine line between explaining a disability and using it as an excuse for bad choices and behavior. I try very hard to stay on the side of explaining Gabriel's behavior but I'm sure that it can sound like I'm giving him an excuse. It's a tough battle when dealing with things like social cues. Since Gabriel was a toddler I've had to explain social cues to him. Say "hi" to the clerk at the store. Shake hands with the neighbor. Give your grandmother a hug. I thought it was the difference between girls and boys - maybe boys needed everything explained to them. It wasn't until later that I realized he can't read social cues. He wants to make friends and he wants to talk to other people but he doesn't know how to do it. He doesn't understand personal boundaries. Up until recently, he went up to other people and asked, "what's your name?" I taught him to say, "Hi. I'm Gabriel. What is your name?" It took a couple months for him to understand how to do this but it seems like a mastered task now. However, I failed how to teach him how to get the attention of the other person. To my embarrassment, he has been grabbing women's breasts to get their attention. He puts the woman's breast in his entire hand and she is stuck there. It works. The woman can't go anywhere but I am in shock every time he does it. It's better than when he bit kids to get their attention. I'm glad that behavior is gone but I have to work on this new problem. Who knew he would grab a woman's breast to get their attention? Seriously, he's 7. Thankfully no one has made a big issues out of it but it needs to stop before he gets any older and gets arrested. Yep, the joys of autism.

Lonely moments

I recently read a blog entry by Flappiness Is. She has a 3 year old son on the spectrum and finally had an event that felt "normal". She could sit back and let other people watch her son without the stares or questions. She was with people who understood what she is going through with her son. When I read her blog, I felt like she was looking into my soul. She has an amazing gift with words. I wish she lived closer because I think we would hang out and be buddies. (you know, with all that time we both have..) I've been feeling extremely unorganized and overwhelmed with things lately. I feel alone even though I know I'm not. It's a desperate and isolating feeling. We are waiting for the school to complete an evaluation process with Alex. We have known for a couple years that something is going with Alex but we don't have a label for it. We want a label so we can understand him and help him succeed. When we are with other children, it is quite evident to me that Alex and Gabriel are not NT. For the record, I am unsure how much longer I'll be able to tolerate hearing, "he's just a 5 year old boy." No, no, he's not. I have some great people in my life here. Some who accept Gabriel for who he is. Why shouldn't they? Most of the time, he's a sweet, fun, and creative child. Yet I can tell that they don't understand. They speak to him like a NT child. They try to have convesations with him like they would another 7 year old and, well, he's not. I take Gabriel to as many events as I can. This past Thursday I took Gabriel to Gatorland on his first grade field trip. I was assigned to another child as well. We walked around with another mother and the two children she was assigned to and it was a nice day. As always, a couple things stood out during the day. Gabriel's best friend helped him unpack his lunch. His friend helps him every day. Gabriel rarely eats though because the cafeteria is too busy, smells too much, etc for him. The child is starving by 3:30! Gabriel squished his GF cookies into many pieces and ate his food contently. Another child made a comment that Gabriel is a gross eater. Poor Gabriel's face fell and he looked like he was going to cry. I was able to remedy the situation but it was at that moment that I remembered, my child isn't normal. He doesn't eat like other kids and other kids can be cruel. Even without those same issues, kids were cruel to me. I remember it well.

Gabriel has loved birds since he was little. The Gatorland birds were no exception. Later in the day, Gabriel's friends went into the little water park. Some of the kids had swim suits and some did not. We weren't planning on going in the water, so I didn't have a suit for Gabriel. He wanted a swimsuit and would not let the idea go. He couldn't. So off we went on an adventure to find a suit or shorts. Gatorland sells swim suits for girls and boys size 12. Gabriel wears a 7/8. I found a pair of teenage girls sleeping shorts and we made them work. What a waste of time and money yet it was the only way to make the situation work. He had a great time once we figured out the swim suit issue. We went to a birthday party for a 2 year old this weekend. The kids had a GREAT time. They raved about it and said that it was the best birthday party ever. My kids have attended a lot of cool parties so this is a big compliment from them.

Our friend went above and beyond the call of duty for our children. She knew which colors to give the kids in their goody bags. She got GF/CF cupcakes for Gabriel. She is amazing and we are grateful to have her in our lives. Throughout the two hour party, I wanted to tell people, "he has autism." I kept chalenging myself and decided not to say anything for the two hours. I don't know who our friend had told but I wanted to see if I could do it. This caused quite an internal struggle for me. Gabriel did well until the food was served. He hid under a table and could not get out to sit with the other kids. My internal struggle now switched to holding back tears. Thankfully no one looked at us funny or I would have been a sobbing mess. Our friend was wonderful - she kneeled down at Gabriel's level and offered him two GF/CF cupcakes. My heart swelled. It wasn't awkward, it was a beautiful moment between our son and our friend who cared enough to take the time to give him his treat. It's these moments that help the lonely feelings. I wish they happened more often but I am grateful for the moments that do come our way.

Cutting fun

Kids love to cut things and my kids are no exception. All three of my kids enjoy cutting things but Lane and Alex have a passion for it
I hadn't thought of allowing Lane to use scissors but found out that school had already introduced her to them. Surprisingly, her little hands do a good job cutting things! Alex allowed her to cut a huge hole in his uniform shirt one day. Thankfully little else has been created except art work with paper.
I created a cutting box for the kids. It has different sized papers and tons of scissors in it. Even though they had access to scissors and paper, they didn't take it out and use it often. They do now!

Dye/die eggs

When I told Alex that we would dye eggs, he was completely confused by the idea. The boys call killing a character on a game, "dying". He thought we were going to "die" the eggs and he could not comprehend what I meant by "dye" the eggs. What a funny misunderstanding!

We dyed eggs the day before Easter. I looked forward to their reaction to coloring the eggs this year. I added patterns and names with a white crayon and they were surprised when something other than a color showed on the egg.

I found the idea of using a whisk on Pinterest. It worked great! I think we'll get three whisks next year. I had to talk the Easter bunny out of hiding the real eggs and hiding plastic eggs. I know I looked for real eggs as a kid but it grosses me out now.

Bunny cards

I am unsure where I saw this idea to make a bunny card. I'm positive I didn't think of it myself - I'm just not that creative! I bought the goggle eyes and pom poms at the dollar store and picked up the whiskers at Joanns. I planned on creating fun cards with this kids this week and mailing them to people who love the kids. Unfortunately, Gabriel hit a teacher at school and needed to write an apology letter to her. For some reason, he's having a tough time at school again. I'm not sure if something changed or if it's his own issues. Either way, he can not hit a teacher. When we worked on homework, Lane and Gabriel made bunny cards. One became a card for the teacher. I really like the colors the kids picked. We definitely defy the norm. The card evoked smiles from the "victim" as well and Gabriel felt a lot better after he gave her the card. He doesn't enjoy giving people things so it was nice to see him happy when he gave her what he created. Maybe next year we can make bunny cards that don't have another purpose other than to pass on joy to the receiver.

Viking Alex

Alex is, among other things, a very funny and creative child. His vocabulary and stories has us in stitches on a daily basis. We got ready for our friend's 2nd birthday party this morning. Alex grabbed two plastic swords and a Viking hat and declared himself "Viking Alex". If we called him Alex, it wasn't good enough for him. "I'm Viking Alex" he would reply. Once we were ready to drive to the party, I closed my door and saw something sticking out of the door handle by my window. This is what he had done:

He thought the best place for sword safe keeping was the door handles! Poor Alex was less than happy when I explained that the highway might not be kind to his swords but we were able to find a better location for the toys in the van.

Sight Word Sticker Books

If you have children in the primary grades, you've heard of sight words. If not, you're missing out on a bunch of fun learning. (that statement is dripping in sarcasm) Alex and Gabriel have zero interest in sight words. I've tried many methods of teaching them these words but have not found a way to motivate them. Until I stumbled across this little gem. A teacher made a sight word sticker book. It's costs $2 for five books in a pdf file. My thrifty soul had a tough time paying the $2 but then I reminded myself that it's just $2, that's one dollar a kid for the creative works of a professional teacher.. not bad! This is the link to get to the book: http://firstgraderatlast.blogspot.com/2012/04/sight-word-sticker-book.html This will take you to the link to purchase the books.

Alex was so excited about this idea. He sounded out and quickly read many of the words. He didn't want to put it away for the night but wanted to keep working on it! It's been a long time since he's been that interested in learning, and he's never reacted this way to sight words. This was well worth the $2 investment. I used stickers to keep him motivated but Gabriel wanted to use a stamper marker, both worked fine.

Yellow Dog Eats

Yellow Dog Eats and so do I! My friend Kim introduced me to this cafe and I LOVE it. We have gone a few times and I could continue going back once a week. I'm surprise I haven't gotten sick of it but their food is THAT good. It also helps that I have the wonderful company of Kim. When we moved, I realized that I didn't take enough time to spend with friends. I did a lot with friends but I could have done better so I vowed that I would not let life take over and when a friend was able to get together, I would take advantage of it. I always have a "to do" list but I won't regret time spent with a friend, I will regret not seizing the moment. My "to do" list will always be there and that's just fine. It took me a lot to get to this point because I was driven by my lists for years but I have been able to let that go a bit. I feel like I've known Kim much longer than I have - we share our lives, we've shed tears, and we've laughed. We laugh about the silliest things and I appreciate having a friend who I can feel comfortable with even after such a short time. The first time Lane and I met Kim at the cafe, Lane threw a fit on the floor in front of the door because the cafe didn't sell chocolate milk. It was quite a scene too. All I can say is thank goodness I think she's cute. No one there made a big deal about it and simply stepped over her. The second time Lane and I met Kim at Yellow Dog Eats, I brought chocolate milk for Lane. Lane pooped up her back and down her legs. I am positive she got poo on the cafe carpet. Oh well, I can't do much about that but hope it isn't as nasty as I think it is but man, I wish I had a hose attached to the van to hose the child off. What a valuable invention idea! The third time Lane and I met Kim at the cafe, we took chocolate milk and everything needed for a poopy blow-out. Everything went well and Lane even met a little friend to entertain while we were there. Third time is a charm! I think we have this cafe dining thing figured out finally.

Pocket Chart Books

I bought a pocket chart and hung it up in our small play room. The kids didn't even notice the red thing hanging on the wall. Until today when I asked them to sit on the rug and watch as I made a magical book appear on the wall. All three children sat amazed at how the red thing transformed into a fun book with words they could actually sound out and read. It was just a couple months ago that Gabriel's lightbulb went off and now Alex has begun CVC worlds and site word recognition. It's fun to watch them work on the words and figure out what each lines says in the book. Gabriel did an exceptional job and after practicing a couple times, he read the senence strips fluently. I have two more little books printed and ready to set up for reading practice. I wish I could say this idea was mine but it's not. In fact, all I had to do was find the link and print the three books. Someone else did the work and even had links for me to use for free. I'm grateful! http://www.1plus1plus1equals1.com/PocketChartPrintables.html Use the above address if you want to use this idea too.