I recently found out a mother I work with has a disabled son. When we first started talking about it I had no idea the magnitude of his disability I just knew we shared a few of the same specialists and took frequent trips to Cooks in Ft. Worth. After more in depth conversation I realized he is a Cooks way more than we were so I know at that moment she was very thankful for Tricare because they help reimburse for travel and hotel stays. Oh how I miss those days now.
When me and her would work there would be a few casual conversations not much about her son. I just knew enough that she also had a older son and nurses who cared for youngest around the clock. At first I really couldn't wrap my head around how she could actually get up and go to work every day and let others take care of her son. I also didn't know how severe his disability was so it was I guess easy to make judgment. I mean I know plenty of mom's who have disabled kids and work outside the home but then I have others who make it a point to be the primary caretaker of their child no questions asked.
About a month ago she was subbing in my room and I had overheard her mention about being late due to the nurse being late and that she was a bit more stressed because her son's condition had begun to change. She spoke of the Make a Wish foundation and how she hoped it would be granted soon. I realized at that point her child was no like mine at all. While my child my struggle to live on his own, maintain social and behavior skills along with some self help her son would NEVER live outside her home let alone maybe never live long enough to experience the teenage and adult years. It was at that moment it but my thoughts of my own child into a big check.
I listened as she talked about his rare disorder so rare they are still trying to name it. He has such a wide array of severe complications they are surprised at the age of 18 months he is even still alive. My heart broke as I thought of my own child being just a year older than hers knowing he was healthy just different. She had asked for a Disney Cruise for her son because they had not had a family been able to take a trip. However her son had began to decline in his health and she feared it might not even happen. She also talked about a stroller she needed for her son that insurance said she didn't need that would allow her to take her son for walks without the use of a bulky wheelchair Here I was just days earlier submitting my forms to the Joseph Thomas Foundation for a few small key items my child needed for therapy. I don't know why but it suddenly made me feel selfish and greedy. I did tell her to contact the foundation to see if they could help her.
I went home and really thought about what my life would be like if Hunter or any of my other children for that matter where in that situation like her son. I really couldn't grasp it, that is until the following day where our therapies coincided for the first time ever. I saw what a great team that little boy had. Mom was right up there cheering him on for just attempting to hold himself up on his stomach or sitting up in a boppy. I really grasped celebrating small accomplishments meant. I saw the rapport and relationship she had with her nurse and it was amazing. I realized now how she could get up every day and go to work. She couldn't just sit at home and feel helpless she needed to feel productive in her life and sitting at home watching her son who is essentially dying was not going to help her. While most would say "I would never leave my child's side" or "she will regret that time she didn't have with him" I realized she might not given that those nurses who are with him and that the time she is with her son he knows how truly loved and taken care of he is.
I was sort of lost in thought and not focused on my own child's therapy and realized I am so lucky. I could never want or wish for my child to be in a situation where I knew I had to have other take care of him. I could never imagine what her daily life is like except for what she reveals at work. While I know I push for doctors and specialists I do it as a precaution while she does her out of sheer necessity. She takes offence when she hears parents say "Oh I think my child has this rare such and such disorder because of this." I can see why when her child truly does live with such a rare disorder it still needs to be identified and there are no answers or cure.
While for us ASD does not have a cure we do have so many resources that we can utilize and know that in some way it will help our child. Whether it be OT, PT, SP, ABA, HIPPO, Therapeutic riding, Service dogs, and a variety of other therapies those are all things that will do something to help our child gain a better quality of life. We should be so thankful to have these options and not feel like we are sitting with our hands tied when it comes to helping our child. I know after hearing her story it really made me appreciate what I had more even despite my insurance battles. I could never wish for my child to have rare incurable, untreatable, unhelpable diseases. I just sit and be thankful that I saw through another mother's eyes just what I need to be thankful for everyday.
Sunday, April 21, 2013
The Look, why yes, I have now on too many occasions to count been on the receiving end of this embarrassing look. It isn't fun and neither is the fear of going in public because you know you're going to receive The Look. The Look, has its desired effect, it makes you feel inadequate as a parent. It makes you wonder what you are doing wrong, when you are trying so desperately hard to do everything right. It also makes you wonder how to shut your kid up and quick before you look like even more of a failure of a parent.
We have left get togethers at friends' homes with Cameron being carried out tucked under our arm sideways, facing away from our bodies, so he couldn't bite us, while he kicked and thrashed all the way to the car, getting him in his car seat wasn't a picnic either. We have had meltdowns in the middle of parking lots where Cameron threw himself down suddenly on the pavement with traffic coming and nearly jerked his hand out of mine and has caused me to have some pulled muscles in my back. Anywhere Cameron doesn't want to leave is a place for a potential meltdown, he doesn't transition well. The park or a friend's house are particularly challenging to leave. As for inside a store, there are any number of things that can set him off. Too much noise, too many people, him being too tired, smells, any one of these things or something else entirely can set off a tantrum.
Once when Cameron was younger, I'm thinking around eighteen months or so, I had an older lady make a comment to me in the grocery store that floored me once I wrapped my mind around the fact that yes, she just said that to me. We had just gotten done with a therapy session, he was tired, in desperate need of a nap and so he was crying and reaching for me to take him out of the buggy and carry him. His cries only got louder when I couldn't take him out because I had to unload the groceries onto the conveyor belt. She turned to me and smiled and said, "I think I've seen you on TV! You must have been on Nanny 911." Then she finished her transaction and left while I picked my jaw off the floor.
For a while, I did indeed wonder how I had managed to turn my child into a brat. I didn't buy him something every time we went into a store, he didn't always get his way, if he did something wrong we tried time out or taking toys away that he liked. Since his diagnosis I now know that it isn't anything to do with my parenting skills. Now that he is getting older the tantrums are less frequent and he is now starting to tell us in his own ways when he's getting overstimulated when we are out in public.
To the "Little Know It All Old Lady" I ran across one day in the grocery store, your comment has stayed with me, as a reminder of how not to be toward a fellow parent. Yes, I still give A Look, to other parents when out in public, but its not The Look. This Look, is a look of sympathy, one that conveys the sentiment that I have been in your shoes and I know its not easy, a look that says I hope your kid just needs a nap and a prayer that they are not dealing with what we autism or other special needs parents deal with daily.
So all you people who give The Look, just remember karma can come back to bite you in the butt. It certainly bit mine and has yet to let go. Think outside the box and realize that it isn't always poor parenting or a kid who is a spoiled brat, but sometimes there are medical reasons why a kid acts a certain way in public. To all the people who have been on the receiving end of The Look, hold your head up high and remember you are doing the best that you can and it does get easier.
Saturday, April 6, 2013
Life as a single father to an Autistic child, definitely comprises the most challenging and interesting times in my life to date. Most important thing to remember with Autistic children is that everything is all about schedules and doing things outside the box. Most days I don't have time to myself, and everything I do has to be timed in between meeting all of Daniel's needs. I have however, learned how to work around this so chores and my exercises can be done with relative ease. Ultimately the largest problem I face as a single father is that I have no help to fall back on. No matter sickness, injury, or just being drained physically, I must always press on. Now that Daniel has started to communicate, he is asking questions to which I do not have answers. Questions about his mother and grandparents and all I can say is that they've gone away for now. Not only must I provide the firm hand of guidance as a father, but I must also show the compassion and sensitivity of a mother as well. It proves taxing mentally at times trying to fill both roles, but what can I do except all that I am able. The only advice I can offer other parents of kids on the spectrum is to slow things down, and try and see the world the way our children do. At the very least it will help you gain the patience and new perspectives needed to understand your children the way that they need to be. And above all else don't panic, things are only as bad as you let them become.
Tuesday, April 2, 2013
By: Tamara Wood
This blog is long overdue! So sorry that I haven’t updated in a while. As many of you know we have been a bit busier than usual lately. Our family and also my mom and two of our friends all flew to Ohio for two weeks to train with our son’s autism service dog, Haas! We have been home since March 30th and have been doing upkeep on Haas’ training and acclimating to the new addition to our family.
We first found out about autism service dogs when I was looking into Hippotherapy for Alex since he has a love for animals. In the process of frantically searching to find out everything I could about autism service dogs and if they could actually be helpful I ran across 4 Paws for Ability located in Xenia, OH. After reading all of the stories of other families that had gotten a service dog for their child I was sold. There are lots of other agencies that train service dogs, but 4 Paws was the only one that I found that would train a 3 person team where an adult is the “handler” instead of the person with the disability. I’m sure you can see the problem with a 6 year old with severe autism and no concepts of danger or responsibility would have issues with that. Therefore they do not have an age limit for how old the disabled child has to be and Karen Shirk, the owner, never turns anyone down with a disability. Besides that, 4 Paws is the only agency that will allow you to help fundraise for them to speed up the process. All of the other organizations, if I could have even used them, had a waiting list of at least 2-5 years. We decided we needed his service dog sooner rather than later for Alex’s safety so I called 4 Paws, spoke to Karen, and started the process of raising $13,000 for 4 Paws for Ability.
Haas has been trained specifically for Alex in that he does tethering, tracking, behavior interruption, and deep pressure. Now when we go out I can just tether Alex to Haas and not have to worry about him running off. This has been a very big issue for us as Alex always wants to run and does not like us holding his hand or having a leash attached to him directly to an adult. He would become self abusive and abusive to whoever he was attached to. However, being attached to Haas allows him several feet of space between him and the adult (usually me). In Alex’s world a few feet is FREEDOM!! We got to make trips to Wal-Mart, Lowe’s, and Pet Smart all in the course of just a few hours with no near escapes and overall happier kiddos. Alex of course still had meltdowns because he hates to shop…stopping and going backward are no-no’s. And we still need to work out the kinks of not taking up the whole aisle with our entourage since Hunter likes to “walk Haas” as well. J
Haas is trained for tracking just in case Alex does get away when he isn’t tethered to him. This is a huge balm to my worries about him getting lost and not even trying to come home and something happening to him. Not understanding all of the dangers out there makes it even more of a necessity that he be found as soon as possible…cars, large bodies of water, heights, etc… Another good thing about the tracking is that Haas has learned from our practice tracks that he always gets great praise, treats, and a tennis ball (he is crazy about tennis balls!) at the end of every track so it is very rewarding for him and therefore it is his favorite “game”. Since every time we have done a track he always sees Alex walking off he has made the connection that every time that kid walks off I get lots of praise and now he starts whining when he sees Alex walking off, which would be very beneficial to actually avoid having to track Alex J.
With the behavior interruption and deep pressure Haas was trained to do “kisses” on command as Alex likes these, he will do a “lap” where he lays his head on his lap, “over” where he basically lies on top of Alex when lying down, and “nuzzle” when Alex is pinching himself. This has already been helpful several times. If I can see that Alex is starting to get overwhelmed I just have Haas give kisses on Alex’s hand and this distracts him a bit. If he is more into the meltdown I try to get Haas lying on him. This is more difficult because of Alex than Haas. Once Alex is upset he doesn’t want to be touched and he is still having to learn what it is we are trying to do for him. But, today Haas shortened a meltdown significantly. After only a few minutes Alex was laughing and petting Haas.
Now that we are home, we are also working on getting Haas to alert us by barking when Alex gets out of bed at night (and by default every other time he gets out of bed, even if he is playing…lol), when he climbs on the kitchen counter which he loves to do, and also if he climbs over the back fence.
Having a service dog is HARD WORK! All of the time and effort on top of regular daily life is very, very tiring. Not to mention the fundraising the $13,000 and then the $10,000 on top of that to actually get to Ohio for two weeks. Thankfully our God is awesome and blessed us with an influx of donations to get us there. Those two weeks were both awesome and frustrating…lol.
We were the ones who were actually being trained for those two weeks. Haas had already been trained and we just had to let him know that he had to listen to us. Haas is very hardheaded. If he doesn’t have on his service dog vest or his gentle leader he doesn’t want to work for you…lol. It was day after day of learning new commands and implementing them not only while in “class”, but also when we got back to the hotel. We basically couldn’t let him out of our sight because we needed to ensure that he was keeping his “manners” even though we weren’t in public. They are basically like kids…you give them an inch and they take a mile! It has been even more challenging here at home as I said since we have other things we need to get done during the day and not just doing training. He is only 17 months old and therefore still a puppy at heart and I have had to purposefully leave out socks, toys, and food for him to find just so that I can tell him “no” and reinforce that he has to have “manners” here too. And of course the boys aren’t really good about picking up after themselves anyway…..so, yeah constant watching. ;-) I have been multitasking making him do some commands while I am working on my computer…lol.