an autism journey

Archive for April, 2012

What Families of Children With Autism Need For You to Know

Today, is the last day of April. As Autism Awareness month comes to a close, I want to take a moment to help you understand what all families of children with autism (any special need for that matter)NEED for you to know.

First of all, we LOVE our children. They may not develop at the same rate as neurotypical children, but it doesn’t matter to us what the timetables are supposed to be. We take joy and delight in each and every achievement they make. Each and every child has their own gifts, talents, and abilities. They are our pride and joy. No matter how severe their disability, each of our children know how to receive love and know how to give it…. As a matter of fact, I would argue they know how to give and accept love better than most people in our society. They don’t base their love on what a person can do for them, they simply love the person for who they are…unconditionally.

Therefore, it not only hurts our children when they are made fun of or criticized. It hurts us, deeply. It hurts equally as bad when they are just ignored. Please accept our children just as you would any other child and teach your children to do the same. If we want society to be better than it is now… we can only judge by how society treats its individuals that make up that society. Only by teaching our children by example, will the world ever change. It is not ok for our children to be bullied. It is not ok for them to be treated like second rate citizens and it is not ok for them to be ignored. They are an important part of this society and have a great deal to contribute…. at home, at school, at church, in the community. Do not stand in the way of them doing so. If however, someone does stand in their way of getting respect, treatment, an education, medical care, or simply being accepted…. We as parents WILL come out fighting. It is in our nature. Even a wild animal has an instinct to protect its young.  All the more as human parents, it is in our nature to fight for our children. That means we may lose our tempers, we may say and do things that might seem extreme, we may even be downright nasty if need be. If you are not part of the solution, step aside, out of the way as we do what we need to do. You have been forewarned.

Second, do not judge our children by what you see in brief encounters with them. You do not know what our children go through. You do not know what the day has been like. For that matter, we as parents may not even entirely know what is going on for them, since some of our children can’t express that to us. Imagine for a moment if the world seemed overwhelming and chaotic and you could not speak a word to tell what was going on. You couldn’t tell if you had a toothache or were sick. You couldn’t tell if the kid beside you hit you when no one was looking. You couldn’t even say… I need a drink of water…  I am hot… I am hungry. Put yourself in their shoes for just a moment. They are doing the best they can. These are awesome kids who are just trying to cope and communicate and handle the world around them. They may act out aggressively. They may scream, cry, or fall apart. They may throw things or tear something up. They may get a little loud at the library or cause a scene at the mall. Please try a little compassion before you judge.  Let us as parents handle it the way we feel is best for them. They are not undisciplined, they are not bad children, and we are not bad parents….. we might choose to hug them rather than punish, we might ignore the behavior all together or we might take them completely out of the environment they are in. That is for us to decide. Your offer of help would be greatly appreciated but NOT your advice on how you think we should handle it differently.

Third, don’t judge us as parents. I am just going to say it flat out. We put all our time and energy into our children. They require a lot. Some of us are full time caregivers. Our children may need help feeding themselves, dressing themselves, bathing, they may not be potty trained. Some of us have to work full time jobs while still caring for our children. Some of us may be teaching our children at home because the school doesn’t have adequate services. Many of us can’t get babysitters. Some of us have not been out alone with our spouse in 6 years (not that I know that person). Our children have doctor’s appointments and multiple therapy visits to keep up with on a weekly basis. We have IEP meetings to attend. We are filling out forms to find resources to help. We are studying up on the latest therapies and treatments. We have other children in our homes that we are trying to give equal attention to so that they do not feel neglected themselves. We may not have had a full nights sleep in years. WE ARE BUSY. WE ARE TIRED. WE ARE STRESSED. That means that our dishes may still be in the sink from last night’s dinner, our laundry maybe piled up, our house might not be painted, our lawns may not get mowed as often as the neighbor’s, we might even go out in sweatpants without doing our hair (shoot we might not have even had a haircut in the past year). We might eat way too much take out and we might not make it to everyone (or any) of friends and family events.  Deal with it. We as parents have put every ounce of energy into our children. They are our priority. Not our house. Not our yards. Not our appearance. Our children. Period. End of story. If you don’t like it, offer to help or stay quiet, but please don’t judge. Your criticism will not give us any more time to get those things done, it will only make us feel guilty for what we aren’t able to do. The fact is we cannot do it all. We are making the right choice to put what we have into our children. Your support and understanding would be far more helpful than your judgments.

The thing is this…. We want the same things you want. We want our children to be happy. If you can take the time to understand what autism is and what it means for our children… what it means for us, then I am pretty sure you will view us and our families a little more appropriately. That is all we ask (that and chocolate… but that is a different story).

Setting Up a Therapy/Sensory Room

My son has HIGH sensory needs. He is in constant movement. He runs, spins,  jumps, climbs, crashes. Sounds normal for a boy, right? Well, only if it is normal for a 6 year old to walk the edge of the couch and take a flying leap head first to the floor…. All the time.  It doesn’t matter if it is 3 am or 4pm, if he is awake, he seeks movement. His little nervous system just gets itself so wound up that it needs a release. We already had a small exercise trampoline, but it just wasn’t enough. Going outside is great during the nice weather. He plays in the sand, runs in the yard, climbs his playset, swings, slides, you name it. He comes in from an afternoon of play, relxed, calm, and able to focus. The problem is it is just not practical to play outside off and on all day, everyday. There are times that I have work that I need to get done and days when it is rainy or too cold. That left us with a void trying to figure out what to do to keep our son safe, protecting our furninshings, and still meeting his sensory needs. A home therapy/sensory room was suggested. The problem? Special needs products are EXPENSIVE! You could buy a car with what it costs to buy some of those items. So, time to get creative, think outside the box, and make it work. There are so many products out there, it is hard to know what to choose. I am sharing some of the things we did in hopes of inspiring you to create your own therapy room/space. Each child is different in their needs and what they like or don’t, but hopefully by sharing what worked and didn’t for us, it will spark some ideas for you.

My son spends most of his time in one of two rooms…his bedroom or the living room. Those were the rooms that made the most sense for us. His bedroom did not have a lot of extra space, but it was able to accommodate a swing. We skipped the expensive swings that were targeted at special needs kids and opted instead for a less expensive IKEA version.  It is tear drop shaped, partially encloses him, and has an air cushion seat that fits inside of it. Don’t have an IKEA nearby? No problem. We found one online at Amazon.com. They start at $50 and include the hardware needed. Basically two hooks that can be installed into a beam in the ceiling in a few minutes. From those hooks, you can really hang just about any swing you choose. There are hammock type, net swings, disc swings, you can even just use a regular old backyard swing. Don’t think it has to come from a special needs store to fit the needs of your child. You will save a lot of money by looking around. My son loves his. He is in it off and on all day. The only downside is that he can swing it pretty far out, so it does require a good bit of cleared space in the room. Well worth any inconvenience that might cause.

For the rest of the items, we needed more space. Our living room is a good size, so there was enough room to simply divide it in half. To the front half, we pushed up the couch, chair, end table, and television, and left the back half all for therapy space. Granted, this is probably not ideal for most homes to have a therapy area in their living room, but it works for us. For the largest piece of equipment, we wanted a climbing structure. Again, if you look at the special needs products, you will probably spend anywhere from $600-$1500. We just needed something for him to climb on. There are many outdoor climbing structures that can easily be set up indoors(some of them are much cheaper than the “special needs” version). There are many to choose from depending on the age of the child, the amount of space you have, and what your child needs. We chose the Little Tikes Endless Adventures Mountain Climber at Walmart.com for $269.00.  It is large enough for him to be able to enjoy it (he is large for the age of 6) and yet still small enough to work in the space we needed it to fit. It has a mock rock wall on one side and a rope type climbing net on the other as well as a slide and even an area to play under the set. The only drawback for us was that he LOVES to jump off of it (which will bring us to the next item below) so, we removed the top bar on one side to keep him from getting that high up to jump. Otherwise, it is perfect. It was easy to put together and is very sturdy. We bought it almost a year ago and it still looks like brand new (that is a miracle in our house since my son is known as the “destroyer”).

We needed something for him to “crash” into though. The climbing wasn’t enough. He wanted to jump off the playset. Although the couch cushions can work in a pinch, we needed something a little more practical to use. This time we did turn to a special needs product that we found at Discount School Supply. We purchased a “Moon Launch” for $171.00. It is 5ftx5ft and filled with large pieces of foam. It did require a large shipping fee ($25), but it is well worth it. We sat ours right beside the climbing structure for a two fold purpose, one being if he falls, he won’t get hurt and two, he can jump off the playset and land into the crash pad. It is great! I must admit to giving it a try myself. He loves to jump, crash, and even just lay on it. It does take up a lot of room, but it suits my son’s needs very well. The one drawback is that the material does seem to stain easily, so I am not sure how “pretty” it will look a year from now, but it is meeting the need. I would imagine if you have the time and ability, you could probably try to make something similar to this, but the materials alone would cost you a good bit. For us, it was a worthwhile purchase.

The rest of the items we have been working on a little at a time. Some weighted bean bags, different kinds of balls, stepping stones, crawl thru tunnel, etc (you will be able to read about these items in upcoming reviews). Some have worked, some have been a total bust. However the area is coming together nicely. It makes life much safer and easier for us with far less meltdowns(and less wear and tear on the furniture).

If you want to put together a sensory area for your child with autism, but are short on cash, check around to see if there is available funding to help cover the costs. Check with your child’s doctor or your local County Board of Developmental Disabilities (I think some areas may have ARC). There are places out there that will provide grants for such things as this. We were able to get some funding to help us cover many of the items. You will probably need to fill out paperwork and provide a doctor’s letter with the diagnosis and the reason why the items are needed, but it is well worth the effort. Don’t be embarrassed or afraid to ask. Raising a child with any special needs is expensive and if there are resources to help you help your child, take advantage of them.

How to Make a Fun and Inexpensive Sensory Box

My son craves sensory experiences. One day during a therapy session, he became very fidgety during his table work. He was constantly “flicking” the items he was supposed to be working with. It is a common problem for him. His fingers are almost always in motion. His therapist could just not get him to concentrate on the task at hand. So, she walked over to her closet and pulled out a tub full of beans and sat it down on the floor. I thought she had lost her mind, but my son immediately got up and went over to the tub. He sat very quietly putting his hands through the beans. After a few minutes of play, he was able to go back to the table and focus on the task they were working on. So, I decided to do the same thing at home. Over the years, we have tried many different sizes of tubs and a variety of materials. We fill the tub with whatever sensory material we have on hand and then bury various toys and figures into the material. We provide some scooping supplies and he is ready to go. He does need supervision during play to be sure he doesn’t put the items in his mouth, but it entertains him and helps provide that sensory experience he is craving. Best of all when he is done playing, we simply put a lid on it and save it for another day. It works perfect on those cold or rainy days when getting outside is not possible. We keep ours put up and only bring them out when he asks for them (thus working on his verbal requests) and it keeps them special since they are not always out and available to him. Laying an old sheet down helps make clean up easy if the material spills out (or is dumped).

        Sensory Materials

  • Packing peanuts
  • Any type of dried beans
  • Rice
  • Sand
  • Water
  • Easter basket filler “grass”
  • Various types of pasta (macaroni, shells, bow ties, etc.)
  • Small pebbles

        Items to add to the box

  • Any small sand type toys
  • Funnel (you can get one in the automotive dept for around a dollar)
  • Miniature figures (dinosaurs, farm animals, ect)
  • Measuring cups
  • Spoons of various sizes (measuring spoons work great and you can get them cheap)
  • Easter Eggs
  • Scoops

Thanks Animals for Autism For NOT Giving Us a Dog

Today, I have an odd thank you to give out.  To those who have followed our story, you know that we were originally involved with a service dog organization that turned out to be a complete scam. We lost a lot of hard earned money, as well as generous donations from family, friends, and community. Pepsi and Global Giving became involved in this scam when they provided funding to the individual who was the “founder” of the so called organization…. funding that was supposed to help provide service dogs to children with autism(You can read more about our story in the previous blog entries). I, as well as the other families, have gone through a wide range of emotions. We were hurt, disappointed, confused, and angry. We tried to complain. We were told by Pepsi and Global Giving to just wait… everything is fine… and PLEASE be quiet. We took the proper channels to report what happened. We turned to media when all else failed. We hoped someone would hear us and do the right thing. 

Someone did. However, it wasn’t the founder of Animals for Autism. It wasn’t Pepsi. It wasn’t Global Giving. It wasn’t people in positions of authority who could have done something….. it was someone not involved in the mess in any way. It was instead someone who could have easily turned the other way and went on with the great work she was doing already… It was the founder of a REAL service dog organization called 4 Paws for Ability. It was someone with a gentle heart, who loves what she is doing, and wanted to help children in need. She stepped up once to help my son by providing a fully funded, well trained service dog (which he will be receiving in October). She could have stopped there…. but she didn’t. She just recently stepped up once again to help another family involved in this mess. http://stinkerbaby.blogspot.com/2012/04/our-new-beginning-to-happy-ending.html#.T4OGIFHBI0o.facebook  Her kindness seems to know no boundaries. She stepped in and went beyond the “right” thing when others who made the mess to begin with wouldn’t. I cannot say enough good things about 4 Paws for Ability.

I have been there on site and seen their dogs. I have seen the training sessions and met the individuals working with the dogs. It is amazing. They are a nationally recognized organization, well respected, honest, and trustworthy. They have trained hundreds…plural…hundreds of service dogs. My son (and now another beautiful little boy from the AFA mess) is going to get a well trained service dog. A dog far better than anything he would have gotten from AFA. It will be trained in behavior disruption, tethering, and tracking (yes, that is right…. The dog is being trained to track my son if, God forbid, he ever wanders off). Wow, we are so excited for what the future holds.

So, believe it or not, I am glad that the founder of Animals for Autism did not follow through on the Siberian husky that she promised us. It could have been a disaster for my son. I have since learned that Siberian Huskies (although beautiful animals) make terrible service dogs and are not recommended for ANY child, let alone an unpredictable special needs child. I have learned that the founder of Animals for Autism lied about her experience, her trainers, her staff, and about the dogs themselves. She was never qualified to train any service dog and certainly not capable of training a Siberian Husky for such a service.  Thank you Animals for Autism for NOT giving my son a dog. (I would however like my money back).

Pepsi assured us that the founder was well qualified and told us they were honored to work with her.  Global Giving (who oversaw the grant program for Pepsi) told us we didn’t know what we were talking about. They said they had seen the dogs in training. Everything was fine. The funding continued despite the evidence. It is because of them that we took our stories public.

 So, thank you Pepsi and Global Giving for NOT listening to us (although an apology would still be nice).  If they had listened to us and stopped their funding of this scam, if they had just admitted they were wrong, the families would have never turned to the media to have our stories heard. If we had never gone public with our stories,  4 Paws for Ability would have never heard about our situation, and so we would not be in the amazing spot we are now in.

So, in a strange way, I am glad for what happened, because in the end, my son is getting what he needs from a place very capable of providing it. However, I don’t want to forget the ones who started this whole thing to begin with. So as a way of saying thank you, I want to actually keep a promise my husband and I made to Animals for Autism’s founder way back last May when we made our first payment. We told her we would spread the word so that everyone would know about this little known organization and what they do….  I believe I am keeping that promise. I am trying to make sure EVERYONE does indeed know about Animals for Autism, their founder, their dogs, and EXACTLY what they do there. For good measure, I want to be sure  EVERYONE knows about the projects that Pepsi and Global Giving support as well…… You are welcome!

Autism Awareness, Not Autism Anger

Yesterday was World Autism Awareness Day. I wholeheartedly support it.  As a matter of fact, I support the whole month of autism awareness. I join the rest of the autism community in lighting it up blue, and  I take the opportunity to share my experiences and tell others about autism. I want to increase awareness in hopes of promoting a more accepting society.  Everyday is autism awareness for me. I am very open about my son’s diagnosis and am more than willing to answer questions that others might have. What I do though in promoting awareness, is for my son. I want answers on how to stop the epidemic that is upon us. I want funding for research to find a cure. I want insurance companies to do the right thing and pay for needed treatments. I want schools to provide services and make accommodations. I want society to accept my son and others like him as equals. I want understanding.  I want the way others treat special needs individuals to change. I want a better world for my son to live in. I don’t do it for myself, my husband, or anyone else. I do it for him.

So, what irks me is that on World Autism Awareness Day, I saw far too many articles about how awful autism is for the parents. I read numerous facebook posts from parents who are angry over vaccinations and doctors and environment and politicians… and God (somehow He always gets blamed). I read far too many things from individuals complaining how THEIR lives will never be normal because of their child’s diagnosis. That just makes me sad. Very sad. I am not saying that vaccinations and doctors and politicians aren’t in the wrong…. But the hatred and anger itself just seems like a waste of time and  energy.

The reality of the situation is that raising a child with autism IS hard. It is VERY hard. There are challenges, there are worries, fears, frustrations. It is hard financially. It is hard emotionally. It is hard spiritually and physically. It is stressful and exhausting. There is indeed far too little sleep, energy and money to go around. However, it is also extremely rewarding. It is full of love and laughter and LIVING.

My son has changed my life forever…. For the better. HE (my son) has changed my life, not autism. People give far too much credit to that word. Numerous reports want to blame autism for marriages breaking up (I am pretty sure if you look at statistics of neurotypical… aka “normal” families, you will find that there are plenty of other reasons people give for throwing away their marriages). Autism is not to blame for people’s lives falling apart and dreams being lost (we can make a mess of things all on our own).

I had plans before autism entered my life. I planned on having more children. I planned on eventually going back to school, having a career, spending my empty nest years traveling with my husband (who by that point would lavish me with expensive gifts), I would read books and SLEEP….oh yeah, sleep, a lot. I know full well, that most of those things will never happen. Autism is not to blame for it (except for the sleep part)….. life changes. Our desires, our dreams, our hopes…. They change with it. I have a child severely affected by autism. As his mother, I am affected by autism, as is his father and his older sister. AFFECTED by, but not destroyed by. If my life somehow becomes “messed up” there is no one (or a diagnosis) to blame but ME.

I will probably not have any more children, but I already have two gifts more than I ever deserved in the son and daughter I do have. I can be completely happy with that. I will probably never go back to school, but I am learning new things daily. I may never have a career (or even another job outside the home), but I function as a teacher, a speech therapist, an occupational therapist, a nurse, a caregiver, a psychologist, an advocate….. a mom, a friend, a playmate. What more do I need to dabble in? As for the empty nest…. That remains to be seen, but I know the possibility of what may become reality. Empty nesters just complain about being lonely and bored anyway and long for the days when their children were home. I will for the rest of my life be needed, wanted, and loved. I will have a purpose as long as I am alive….. that doesn’t seem so bad to me. Traveling with my husband? Ahhh….  Who says there isn’t excitement in my backyard? Life maybe different than I envisioned, but that doesn’t mean it won’t be GREAT.

You see, yes, there are days when autism stinks. I wish my son didn’t have autism. I wish I could make it all better. Of course, I want the best for him. There are days when I complain and vent, just like everyone else, but there are more days when I stand in awe of the incredible gift I have been given. My son is AMAZING. He is smart and funny and sweet and awesome. He sees people for who they are. I sometimes think he understands the world far better than the rest of us. How could I be angry when my son has so much to give?

For me, I will go on. I will continue to advocate… to fight for my son’s rights and promote awareness, I will make a fuss when he needs something or isn’t treated the way he should be, but I will not complain about having to raise a child with autism. Instead, I will thank God that my son shines in the midst of it and I will be forever grateful that God gave me the honor of being his mother.

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