Thursday, August 15, 2013

Potty Training your child with autism


Ok…so, take my advice. DO NOT start this potty training procedure unless you have nothing else to do! And even better…don’t leave the house! I started doing it on a Sunday and made some progress, but then Monday morning…BOOM! I had a TON of work to do…I work from home. I tried…I really did. But, I had to put it off after only one day. As you can imagine, I wasn’t really getting any work done…Having to get up every 5 minutes and whatnot.

 

This is the only potty training procedure that I have seen that is even close to working for a child who doesn’t really respond well to social interaction (praise) and is nonverbal. The repetitive nature of this potty training procedure is perfect. I know that Alex learns best through repetitive and consistent instruction.

 

At this point Alex will push “potty” on his communication device when he needs a diaper change and is consistently using the potty when taken to it. Our only hurdle now is to get him to understand that he needs to tell us “potty” before he urinates/has a bowel movement in his diaper….that he should only do this in the potty. But, pretty good progress…eh? J For his reinforcer I was using bubbles and that was really fun, but I think I am going to have to think of something even more motivating. Finding something that your child will just go crazy over is the key…well, that and consistency. If they love the iPad, take it away for a few days or a week and then only give it to them when they use the potty. If they have a favorite candy, food, song, toy, etc…take it away and then only give it to them when they are successful. If the reinforcement is not enough to make them want it really bad then it will take longer.

 

So, just make sure you are prepared first before starting potty training as it will help a great deal! Don’t just prepare the items that are listed above, but also prepare yourself to follow through! Just keep thinking about the end result and how much you will be helping your child in the long run. We have been turned down for several things all because Alex is not potty trained. You will get discouraged and you will get frustrated. I know. I only did it for one day and was thoroughly frustrated and worn out. Alex did pretty good and was tolerable of me interrupting his play every 5 minutes, but at first he didn’t want to sit on the toilet that long and he can get aggressive. I can never get used to my son trying to hurt me or making him get to the point where he wants to. But, I just prayed and asked others to pray and God helped me through it and I think helped me to see that I can only do so much. That said, don’t beat yourself up if you do need to take a break and regroup.

 

You’ve got this. Your child CAN be potty trained!

 

~~Tamara

 
POTTY TRAINING PROCEDURE
 
 
 
 
Prerequisites

·         Ability to Learn

·         Mobility

·         Physical sensation of the need to eliminate (this is assumed…unless there is a medical condition that prevents it)

·         Ability to control elimination (also assumed)

For More Information…

·         Toilet Training Persons With Disabilities: A Rapid Program For Day and Nighttime Independent Toileting, Richard Foxx

·         Toilet Training in Less Than a Day, Richard Fox & Nathan Azrin

Preparation

·         Adult toilet or potty chair? (adult seat is suggested so there is no transition needed)

·         Underwear or training pants will be worn during the day. Diaper or pull up may only be worn at night.

·         Training pants

·         Center and side panels made of 100% polyester white batting.

·         2 kitchen timers or stopwatches (on phone) with minutes and seconds.

·         Reading material in bathroom(s) (for the parent to pass time)

·         Chair or stool in bathroom(s) (for parent to sit on)

·         Changes of clothing in bathroom

·         Paper for keeping track of Urinating in Toilet, Accidents, Dry Pants, and if the child WI (walked in the bathroom, WT (walked to toilet), ST (Sat on toilet), FI (fully initiated)

·         Reinforces (things the child enjoys. Ex. Favorite foods, toys, etc…)

·         Plan ahead for a start date

This procedure is very intensive in the first days and possibly weeks. Therefore, preparation for allotment of time for implementing the procedures consistently and correctly is crucial to achieving the desired outcome of toileting at a level of independence that is age-appropriate.

 

Procedure

·         Put child in underwear or training pants as soon as child awakes. Diaper/pull-up may only be used at night. No diaper/pull-up during nap or car rides. (can put a liner and towel in car seat)

·         Boys and girls both sit on the toilet. Boys can be taught to stand later, if desired.

·         Encourage child to drink water or other fluids at least every 30 minutes.

·         Put child on toilet every 30 minutes. Child stays on toilet until voiding or 15 minutes, whichever comes first. If child does not void after 15 minutes, allow child to leave bathroom ad restart 30 minute timer. (the speaker suggested having a large bean bag handy if you have a child that is aggressive…it does come in handy, trust me)

·         Limit adult involvement in the toileting process. (have child walk to toilet, pull down own clothes.

·         If child voids, immediately provide tangible reinforcement and praise, have him pull his pants up, and allow to leave bathroom, restart 30 minutes on timer.

·         When restarting the 30 minute timer, encourage the child to drink.

·         Dry pants checks. Every 5 minutes, check to see if child is dry. Put child’s hand on front and back of pants to check self. If child is dry, provide tangible reinforce and praise, and restart 5 minutes on timer. If the child is wet, start positive practice.

·         Praise should emphasize the word “dry” (If your child is nonverbal I would be sure to limit words and just say “dry” happily)

 

·         Positive Practice: If child is wet, have child touch the wet (say “wet” and sound disappointed) and tell them where they must urinate. Example. “Your pants are wet; You need to go pee pee in the potty”. Then, quickly take the child to the bathroom, pull his/her pants down and sit him/her on the toilet. Immediately have child stand up without allowing the opportunity to urinate in the toilet and pull wet pants up. Take child back to the place where the accident occurred or was discovered.

·         Repeat the sequence 5 times. After the 5th time, clean child and replace wet clothing with dry clothing and reset 30 minutes. Send the child out of the bathroom without allowing the opportunity to urinate. Avoid corrective feedback, lecturing. Maintain neutral affect, and avoid loud or angry voice. However, positive practice should not be fun for the child. The purpose of positive practice is to reduce accidents.

 

·         As soon as first initiation occurs, stop scheduling potty time. Continued scheduling may result in a dependence on scheduling. Limit adult involvement in the toileting process.

·         At this point there may be an increase in accidents. Continue to implement positive practice and dry pants checks, and accidents should again decrease as initiations increase.

·         If accidents do not decrease within a day or two, go back to scheduled potty time every 30 minutes. When the next initiation occurs, again discontinue scheduled potty time.

·         If the child is not having any accidents, but is not initiating, gradually increase the length of intervals between potty visits until child has only the choice to self initiate the toileting process or wet pants, which should result in positive practice. (30 min»60min.»2hrs.»4hrs., etc…)

·         If the child is a boy, it is appropriate to teach him to stand to urinate, if desired, when he is able to stay dry, with few or no accidents and is independently initiating bathroom visits.

·         It is at this time that the child may also be taught to request the bathroom.

 

Bowel Movements: At first, do not take any action when BM occurs other than to clean the child and put him in clean clothing, no positive practice. Many children will begin to have BM’s while they are urinating in the toilet.

·         Usually, positive practice for soiled pants will only need to be implemented 1-3 times before BM accidents no longer occur.

 

Possible Problems

·         Hesitance to implement positive practice.

·         Hesitance to allow accidents.

·         No data collection.

·         Not enough dry pants checks.

·         Limited opportunity to initiate.

·         No initiation.

·         Judging success of the procedures based on emotional responses rather than the targeted behaviors.

·         Continued accidents over a period of time when consistently implementing positive practice.

·         Inconsistency.

Tips:

·         Definitely have a book or a TV show to watch not only while waiting in the bathroom, but for in between checks and potty times…It’s nice to get away from it all for 4 minutes. J

·         Get up before the family and make meals for the whole day. You won’t have the time or the energy to try to make meals for yourself, much less the family.

·         Take time OFF! Take it from me, trying to do this potty training and do work, housecleaning, make supper, etc…is NOT a good idea.

·         If you can have time with just you and the child to be potty trained it would be optimal…or at least someone to help out at the house. Having a younger sibling who does not understand can be very frustrating.


 

Saturday, May 25, 2013

The married Single parent- Jamie

I posted this on my personal blog but since this is one geared for special needs I figured why not post this here also!


Sounds like an oxymoron right? I am sure it is but at the same time most people I know understand what I am talking about. You are married, you have a spouse that you share a life with, and you have a family. However there comes a time you feel like when it comes to the kids you are doing t all on your own. This is not to take a dig at the true single parents or make it seem like they don't have it worse than us but that level of frustration has got to be a big higher because we have these expectations in our mind that we are a team we work together and we do it as one. 
I often think those who raise children who have special needs already sort of have a nail in the coffin so to speak when it comes to that whole working as a team, making it work moto. In the majority of the families I know of it is the mother that does the majority of the work when it comes to the raising and well being of the children. When I say that I mean they take them to their doctor apts, dentist, school functions, extracurriculars, and set up the play dates. Now this is not to discount the father's who do this but there is just generally one parent who is in charge, so to speak, when it comes to these sort of things. For the most part we embrace these responsibilities. We were given this responsibility because we were right for the job. We know the needs that need to be met, the things that need to be taken care of so therefor they become ours to handle. Again sometimes this isn't always the case but I am just going off what is typical in a normal typical home. 
So back to where I feel special needs families are at a sort of disadvantage so to speak. We as the primary caretaker of the kids do all that we do that is required of having a typical child but then you add whatever that special need is to the mix . It might be extra appointments, therapy, traveling to specialists, home healthcare you name it. Suddenly there are days you feel like you don't have a partner that its you and only you taking on the tasks of that child and there is no wingman, go to person, partner, teammate to bail you out. Sometimes this happens just because the other parent feels inferior and has no idea what it is they really need to do and feel helpless. It generally isn't that they don't want to help or they don't feel like being involved they just have no clue where to jump in and what to do.
While that parent who feels like they are doing it all wants to scream and shake their partner into submission, they avoid doing so for many reasons. I don't think I need to elaborate but we come to our sense and realize that we should take that energy and direct it to a more useful purpose which would be helping that spouse help us more. Sometimes this works, however I won't lie sometimes this results in even bigger problems. The key is in how you address it and how you go about solving this problem. Delivery is key!
I encourage families who have special needs children to invest in that sitter so that you can attend workshops, trainings, symposiums, and of course date night. That trustworthy sitter you have for your child will be worth their weight in gold if that means you two can get away and realize what it is that you need to work on. It is hard to be that "single" parent to your child and its hard on that parent to feel like they have to carry that entire load when they don't need to. Life is hard enough no need to make it even harder. 
I did the single parent thing. It wasn't fun by any means but at the same time I knew that I had to handle it all. I couldn't turn around to my partner and "I need back up, please take over, help me out!" I accepted this as part of my choice to be a single parent and did it with ease I believe. Not that I would want to do it again but I know if God forbid I ended up in that situation again I would be ok. However I am married, I have my go to person, my wingman so I plan on utilizing him the best I can when I can. This is a learning experience for the both of us. However with the right tactics we will be better than the "married single parent" status. 
Jamie

Wednesday, May 8, 2013

So who is in charge here?!

This week has been finals week for me and nothing can stress a parent out more than trying to juggle the immediate needs of their family, work and then of course school. I happened to have 3 back to back exams and felt like I was all over the place these last few days. I can tell that H has felt the effects of this but so has my oldest. I am here but not in the present, the now. I am around enough to whip up a quick dinner and then vanish behind my computer until very late in the night. I put a lot of pressure on myself and that could be my biggest downfall. I suddenly feel I have a lot of expectations to live up to such as my Bomb Wing award I received this quarter and being on the Dean's List, throw in some advocacy work and being everything to everyone it starts to take it's toll. 

Tonight I had my last exam for the semester. Just two more to go! I had my husband and H in tow as I walked into the school. Chris needed to speak to his advisor real quick while I was taking my exam. I was holding H and it was clear he didn't want to be held. He saw the big openness of the building and was ready to take off. I had to turn in a few last minute assignments so I held H in my arms to ensure his safety. He was doing his loud shrieks, flapping, squirming and laughing his really crazy loud laugh. I held on just a bit tighter hoping this pressure would relax him. Of course it didn't I did this until his dad reappeared from the bathroom and I passed him off so I could get ready for the exam. 

However in that time I was holding H a older lady walked up to me and said "It's clear who is in charge here and it isn't you." I know my facial expression wasn't pleasant as I was taken aback by it and really caught off guard. She quietly said "cute kid though" as she walked off. I really wanted to say "Look lady if you think you can do a better job with my child and show him who is in charge by all means go for it!" However my inability to speak and my lack of wanting conflict left me biting my tongue. Where does she get off saying such things?

After cooling down and processing this I realized to an outsider of our world it would appear as if we don't have control or charge over our situations. It looks like we are helpless parents with spoiled brats who don't care to listen. What she is failing to see, along with all the others who have thought or said those same things is, this big open space we are in is an invitation to run and explore, these lights in the ceiling are not just lights it is like a disco strobe blinking incessantly to them, the smallest hum of those lights or the noise of people or other noises are like a bug buzzing right up in their ears pestering and frustrating them because they can't tune it out, the unfamiliar situation and lack of routine is also a factor in how their temperament will be. However I am not going to sit there and lecture her on the finer points when I have a child to tend to that is needing to be calmed and removed from a situation that could turn very ugly very quick. 

I started thinking though maybe I should start taking the time to explain what ASD, SPD and APD are to people and how that while they think my child is a complete defiant brat he actually is a very sweet, highly intelligent child who battles the everyday life of not being able to control a lot of what he does. He is also only 2.5 years old. We have all sorts of people working with us to help him have more control and abilities of being able to help himself but until then we do the best we can. 

So who is in charge here? We are, his parents who spend every waking hour, are in charge. Yes there are times we might not look qualified to even have a child let a lone one with special needs but honestly I think we do a fine job. This made me realize just how important all these therapies are to our children the OT, PT, SP and of course ABA. All that they learn through these types and other therapies are going to help coach them to know that we are in charge and we are aware of their needs and it's ok we got this for them. This also teaches them that they can be in charge of themselves to a point also. Every day is a learning experience for us and for them. Now we just need to take that knowledge and share with others that we have got this and we are infact in charge!-- Jamie Thomas

Tuesday, April 23, 2013

Through another mother's eyes

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.
Jamie

Sunday, April 21, 2013

The Look

 

 
 
Once upon a time, I was one of "those" people. You know the people I'm talking about. The ones that when your child was acting less than perfect in public that gave you the dirty looks and you knew were making comments you couldn't hear, or well maybe you could hear them.  I'm guilty of giving those looks and making those comments of "my child will never act like that", "what that kid needs is a good spanking", "if they would only discipline their child...", "they need to learn to tell that kid no". Yes, I know, I'm a no good, horrible person and yes, karma is a pain in the butt.

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.

~Dani

Saturday, April 6, 2013

Autism and the Single Dad

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.
Coleman

Tuesday, April 2, 2013

Icing on the Cake

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.

 





But, it is all worth it….every bit.  The peace we feel about not having to worry about Alex running off would be enough as it is, everything else is just icing on the cake. 

Monday, March 25, 2013

What Does Autism Look Like?


“Happy families are all alike; every unhappy family is unhappy in its own way.”    ~Leo Tolstoy

 

Want to tick off a Spectrum Parent? Tell them the hated phrase, “but he doesn’t look autistic!”

What does autism look like? For our family it is: sleepless nights, tantrums without warning, high pitched talking and giggling, the need to line up toys throughout the house, inability to understand correct social interactions, repeating words and phrases, walking on tip toes, wanting to be near other children and play with them but then playing alone, lack of empathy, no fear of danger to self or others, inability to sit still and concentrate, sounds, sights, smells, touches, and some places are over stimulating to him and can set off meltdowns, behind his peers academically, emotionally, socially, and physically, his level of comprehension is that of a preschooler, aversion to certain foods, obsessively plays with only certain types of toys, does not play with toys correctly, refuses to potty train, aggressive behaviors toward others when things are not the way he feels they should be, seems to be “deaf” when called by name or told/asked to do something, takes long periods of time to calm once upset, multiple tantrums on a bad day, meltdowns that can last an hour or longer, routines have to be followed and if routine is off it can set him off for days or weeks. This is just some of the things that are a part of our world with autism with our son, Cameron.

Autism parents are told on multiple occasions “I don’t know how you do it!” Yeah, well we don’t either; we just do what we have to do because there is no other option. Our children cannot change who they are and that is part of autism. We can make sure they get the therapies they need to teach them coping skills, we can take them to doctors to make sure everything medically that can be done is being done, we can daily accommodate their needs to lessen the stresses that the world places on them. We cannot however cure them from their diagnosis. We can help them learn to manage their autism as they get older so that it does not manage them, but we cannot cure our children of this medical diagnosis.

When a child is diagnosed as autistic, I think all parents go through a grieving process. We grieve for the life we imagined for them, we grieve for the hardships they will endure being different in a world that has really truly not learned to accept everyone who is unique, we grieve for the loss of a normal childhood for them and for us as parents who hoped to enjoy all those momentous milestones with them. Once we get over our grieving process though most parents do one of two things. They either try to hide their children so no one knows they are different, pretending that the autism does not exist and will eventually go away. These parents act as though autism is something they should be afraid of, that it is a condition they caused their child, that maybe their child is being punished for something they did, or maybe even some (I hope not) resent their child and wish they did not have to deal with them. Then there are the other parents. The proud (again I hope) majority! We ban together to spread awareness, guard our children like lions and lionesses, seek out therapies and specialists to help us help our children, incorporate therapies into our home life, and pretty much turn ourselves inside out daily for the benefit of our children only to proceed to do so again the next day and every day after that.

Autism looks different in every child I have met. No two cases of autism are the same. There is no set way for autistic children to act. Each child has their own place on the spectrum. Think of it like a fingerprint, even twins have their own prints to differentiate them. Autistic children do not look a certain way; there are no defining physical characteristics. Happy families may all be alike, but autistic families are all unique in their own way.
Dani Wade

Thursday, March 7, 2013

Accepting the new normal

I wrote a blog entry on my own person page a few months back about acceptance and not being so judgmental. We all realize after we are the situation we are in that we at one point was that parent that stood there looking on at that family who had a child out of control screaming, crying and just being plain "terrible". Unbeknownst to us that this family is going through a heck of a time with a child who has special needs such as ASD and we are only seeing things from an outsiders perspective. I am going to post my link to my blog here so those of you who would like to read it can. It really opened my eyes to the person I was before this all happened. We are not bad people for thinking the way we did as we would never know to put ourselves in their shoes because who honestly thinks automatically that this child might have some sort of disorder that makes them behave the way they are? Now granted this isn't always the case with children but it just sort of makes you think before you judge in any situation now. Unless we fully understand the situation you can't judge and its not the right thing for us to even do.
http://www.jamiedimmitt.blogspot.com/2012/05/not-so-judgmental.html

This week I decided to open up my eyes and realize that no one can tell me my son does not have what he has unless they are a doctor. I think it was that moment when I decided to put the Walk Now for Autism Speaks poster up at work Tuesday that I finally realized who cares what others say! They don't know what we are going through and they might not be as educated in all this as I am so now it's time for me to begin educating those around me to include my co workers. Prior to this week I was still a bit in my denial mode. I figured people thought I was crazy and that there was no way my son had PDD. Heck I doubt half my co workers, friends and family know what it is so why I would let them get in my head is beyond me.

Tuesday after work I realized someone took down my poster threw it away and that is when it hit me. If I am going to do my very best for H and do all that I can to be supportive and advocate then I need to get over my own insecurities and be proud of who my son is! Here is my eye opening post I put on my son's Facebook page last night. I have received almost 800 views in the last 24 hours just for that one post. I really seemed to have hit the nail on the head with others in my shoes. This was the motivation I needed.

For those wondering I went and created my own flyers to put up in various spots at work and to those who don't care to support that is fine but you know what it doesn't matter I don't need their validation and their acknowledgment of what my son has. I have the piece of paper from his doctor I live with it daily.


I know this might sound crazy but it is something I must get off my chest. Since this whole road of our diagnosis began part of me lived in denial and let the thoughts and words of those around me influence how I felt about what was going on. I was more afraid of people think I was crazy for saying my son was on the spectrum and that every time they said " Are you sure he is Autistic? He doesn't seem like he is?" I let that get to me and question if this was all in my head. After today NO MORE! I will be proud of who Hunter is and when those around me question our diagnosis I will respond with " yes he is and this is what Autism looks like."
See there are many faces of Autism there is no look or set way Autistic children act. This is a SPECTRUM disorder meaning there are so many aspects and ways to diagnose. Who are we to let those who don't know begin to make us feel we need to question or second guess our diagnosis? Who are they who get to question those diagnosis given to these children? They are the ones who need to be educated and understand how much Autism awareness has evolved over the years.
So our house will be lighting it up Blue April 2nd, walking for Autism Speaks April 27th, joining support groups, being active in the Autism community, form support groups and become and advocate and educator to those who need it.

Wednesday, February 6, 2013

Welcome to Holland

Blog entry done by Jamie Thomas

I was speaking to a friend today during the kick off for the Walk for Autism Speaks today. She told me she found what she wanted to write her book about and it was in regards to the blog our group had started. As I looked at her notes it came to me she needs to read "Welcome to Holland". I could see in her face that she was never prepared for this journey, of course none of us in our group were. We had our expectations all laid out in our minds the moment we found out we were expect. I stopped her in mid thought and asked if she had read it. A bewildered look came across her face and I knew she had not. I summed it up to her and she seemed to grasped the gist of the meaning behind it. I remember my dear friend Lisa posting it on my wall a few months after we began this journey and it all resignated  with me and opened up my eyes in ways I never thought possible.
A few weeks ago when I created this group I knew how I wanted to preface my portion of the blog. I love reading "Welcome to Holland" because it reminds me to much of exactly how I felt when we started out. While "Holland" was not my destination when I became a mother to Hunter, I have to say it's not that bad. Once you reach the stage of acceptance you learn to make the most of it and the situation is what you make of it. So with out further ado........
 WELCOME TO HOLLAND
by Emily Perl Kingsley. ©1987 by Emily Perl Kingsley. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.