This morning she told me she didnt want to use the potty so I told her that was fine and put a diaper on her and just let it go. She then made the choice to use the potty on her own (I did ask a few times but didnt pressure her at all). I think a very laid back approach will be needed with her. With Emma we were pretty intense about it, going every couple hours or more often if she didnt pee and it worked great with her. Every child is different so I think a more laid back approach that isnt pressured will work better with Grace! Im excited to see how she does over the next week or so! GO GRACE!!! :)
Wednesday, May 25, 2011
Day 3 of potty training
Day 3 and so far she has totally exceeded my expectations! The last 3 days Grace has successfully pooped on the potty, she has had a few wet diapers/pull-ups but overall, has gone pee several times a day on the potty too! I found fruit snacks to be a great reward! They are something new so it is easy for me to limit them to one or two, and she keeps the whining for treats to a minimum that way. They do have red food dye, but I feel the trade off for a short period of time may be worth it!
Tuesday, May 24, 2011
Potty Training has begun!
The big day is finally here! We are starting to potty train Grace. Emma was unbelievably easy to train so we are making up for it this round! I first tried to potty train Grace a few months ago, but she was nowhere near ready! We are giving it a try again and so far everything seems to be going well. This has been a completely different expirience this time around. Children with sensory issues have a lot harder time potty training than other children do. Its also a lot more difficult to decide when to do it. There are certain "potty ready" milestones a child needs to hit before they are ready. Children are not able to physically hold their bladder or bowels before 2 years of age. You then want to look for sign such as being able to hold their bladder at least 2 hours, including naptimes. If they let you know they are wet or poopy, or are able to tell you when they are going. They should also be able to sit on a potty or potty chair unassisted and ideally, be pulling up and down their pants with little to no help. Most children will hit these milestones between 2-3 years of age. For kids with sensory issues, these milestones are often not met till much further down the road. Grace hasnt even reached many of them, but is doing relatively well so far so we are going to keep pressing forward!
Yesterday, she refused to sit on the potty at all! She actually took it apart and hid it in different rooms. Then, once I gave up, she put it together and told me she wanted to go potty! Then she sat down and pooped right away! I was SO excited! I gave her 1/2 a popsicle right away for it (unfortunately it was a red one so I paid for that today!) and made a HUGE deal out of it! Then a little later she also peed! WHoopppeeee!!!
This morning she peed a tiny bit right away, but then peed right away in her diaper. (we are rotating between regular pullups and diapers). She did poop again and pee again on the potty today also! Once she is a little more consistent with it, we are going to feel and learn pullups. The struggle we will have is she doesnt seem to recognize the need to pee, although she can tell me when she is doing it on the potty so its a good start! What potty training methods have worked well for you?
Tuesday, May 10, 2011
The Cafe mom!
This was an article I just read and really enjoyed! Just wanted to pass it on for everyone else to read. I feel like it is very accurate and addresses a LOT of misconceptions people have about Autism!
Monday, May 9, 2011
Yes, I can hear you!
Mom! Mom! Mom! I want___! Repeat 20 times at a scream and welcome to my day. Oftentimes a form of stimming you can see in autistic children is a need to repeat phrases over and over and over. Other times it can present itself as a need for children to get you to repeat them. The advice I have given many parents is to answer once, then ignore it. However, now that I am in their shoes its a whole different ballgame! I have been going to bed more and more often with a pounding headache after hearing my child scream all day long! She has a hard time moderating her actions and words so while I know she is screaming, it just doesnt come across that way to her. Do you ever deal with this? What is your response to it?
Saturday, May 7, 2011
Congo- Our service dog!
Dear Family and Friends,
Many of you already know about the struggles we have faced with Grace, our youngest daughter. For those of you who don’t let me bring you up to speed. On October 23, 2008 we were thrilled to announce the birth of Grace Lynn Fiedler to our family! She was delivered safely and pronounced the picture of health, despite a scare during our pregnancy of a concern for Down’s syndrome. She had a little more than the normal illnesses as an infant, but seemed to be doing well. At around a year she began to talk, the sound of her voice was an amazing gift! She said several words, Mommy, Daddy, sissy, even our dog’s name Jersey! Then at around 14 months we began to see a drastic change in her. It was not uncommon for her to scream for up to 4 hours at a time, rolling on the floor flailing her arms and legs and banging her head on the ground. At first we attributed it to a strong-willed child. When it began to happen daily, we sought out advice from our pediatrician. Nothing seemed to help. She stopped talking, and everything was beginning to be a battle. She started to walk and I hoped this would alleviate some of her frustrations. It didn’t. Our lives were becoming an emotional ride of happy and angry moments with her, we never knew what to expect and were always bracing ourselves for the next meltdown. At 18 months she still had not regained the speech she had lost. We were seeing repetitive behaviors that when we tried to stop, she would become extremely upset. We had certain ways we had to do everything with her. I was working as a line therapist for the Wisconsin Early Autism Project. My supervisor recommended I have her tested. I thought, “She doesn’t have autism though”, but I went ahead with it. We met with them when Grace was around 20 months old. Looking at her through their eyes I was surprised at how many signs I had not noticed. Their diagnoses came back PDD-NOS with a Sensory Processing Disorder. Not completely convinced, we went to the Weisman Center in Madison. They are very well known for the research and work with autistic children among many other things. Their diagnoses came back the same, PDD-NOS and Sensory Processing Disorder.
So what is PDD-NOS? It is called Pervasive Developmental Disorder- Not Otherwise Specified. This is a form of autism. When diagnosing autism there are certain criteria that need to be met, a set number of symptoms need to be met from different categories. In some instances, children show several symptoms but for some reason (often because of age) they are unable to meet certain criteria (such as social aspects, a 2 year old is too young to meet these qualifications). In these instances where they show some classic signs, they are given a diagnosis of PDD-NOS. There are no two autistic kids that are alike. It is a spectrum disorder, and kids can fall anywhere on the spectrum. In Grace’s case, the autism is considered moderate.
Sensory Processing Disorder is a lesser known disorder. It affects a lot of children with autism, but it is also just as common in children without autism. It is when children are unable to appropriately process what goes on around them. Some children seek more sensory input while other children shy away from it. At some point we all have a little of this, in children with a disorder, they have a very hard time being comfortable in their own skin. There are many different examples a person can give. In Grace’s case, she seeks more input. Some of the behaviors we see in her are her hitting herself repeatedly, or hitting others. Biting people or things, or putting everything in her mouth to try to satisfy a stronger than normal oral need. She has low muscle tone which makes her “floppier” than normal; she will sometime just fall over when walking trying to get some input. She doesn’t have a good concept of what is considered safe. She will jump of a bench with no one to catch her, then continue to repeat the action despite the fact it may hurt her. She will get out of sorts and have no ability to calm herself down. In some kids what would be a minor temper tantrum can turn into a 2 hour fit of screaming, throwing things, hitting herself, throwing herself in walls, on the floor and a list of other things.
When we first learned all this, we took all the right steps; she is heavily involved with birth to 3 with a speech therapist who sees her on a weekly basis, as well as an occupational therapist who meets with her on a weekly basis. We applied for the state waiver program that allows us to receive funding to get her ABA therapy (Applied Behavior Analysis therapy, so far considered one of the most effective therapies). In the meantime we were pretty much on our own to try to figure out where to go from here. It was a lot of trial and error. Something that helped her one day would not help the next. Some days were full of screams and fights and others were great! We recently found out that we were not approved for assistance. This was a big blow to us. I am home with her on a daily basis so I see the impact that this is having not only in our lives, but also in her development. I feel the pain that Emma (her 5 year old sister) goes through when Grace out of nowhere meltdowns while they are playing.
I recently heard about service dogs for autistic children. I was intrigued and started doing some research. I was astounded by what I learned! I was reading testimonials from other families who had gotten service dogs and how their lives were before. I felt like I was reading our story on there! I was amazed at the progress I was hearing kids made. After doing some research, I came up with a place I felt would best suit our needs. Compassionate Paws, Inc is a company located in Wisconsin and is only about 45 minutes from our home.
So how will a service dog benefit us? When Compassionate Paws trains a dog they are trained in basic obedience, public access, behavior redirection, deep pressure, and boundary training. Behavior redirection is necessary when an autistic child is engaging in a behavior we want to stop, but by pointing it out you can often encourage instead of discourage the behavior. An example for Grace of this is called stimming. This is an act that can help to calm a child down or get a child more worked up and lead to a meltdown. In Grace’s case, she does what is called pressure stims. The more she does it, the closer to a meltdown she is. When we tell her stop, it only encourages her to do it more. We use redirection instead, which interrupts her behavior and engages her in something else without ever directly addressing the behavior. The dog would do this by asking to be petted, placing a paw on her, or a similar action. How our dog will do may be different, the cue is specific to the dog and taught during training. Children with sensory issues often benefit from deep pressure activities. This could be being “squished” by a pillow, or laying under a weighted blanket, the dog will also be able to lay down with her to help her calm down in stressful situations. Boundary training is where we will be alerted if Grace leaves our house, or when we are out in public if she goes to take off we can give the command, “Grace stop!”, and that will signal the dog to lay down which will stop Grace. This is especially important to us as this is a growing problem we are having. Several times, Grace has tried to run into parking lots, or has gotten out of our house, and this is a big fear for us!
Other benefits a service dog can provide for her is a decreased sense of anxiety, better ability to separate from parents, it can be used as a tool to encourage her to talk to people, less meltdown, an increase in self-confidence, and the list can go on and on! We feel at this point we are stuck in a sort of rut with her. When she is with us, we are seeing lots of improvements, unfortunately, it is only when she is with family at home, or with her small group of trusted people, that we see these improvements. We are hoping that by getting her a service dog we can help her break out of her shell with other people as well.
So where do you come in? The goal we need to reach is $9,000.00 for this dog. It’s a lot of money! Once we have our dog approved, we will begin fundraising for the money. If you are receiving this, I am hoping that you will be willing to help us out. We will be looking for help in many ways (not just monetary!), if you are interested in going on this journey with us, you can e-mail me at jennfiedler82@yahoo.com with your contact information and I can get in touch with more ways you can help!
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