Noah and possible helps from the county

MUCH has happened since moving back to Ohio. I am currently in the process of completing Noah's SSI and Medicaid application. I meet next Wednesday to finish that process.

Friday the lady from the county comes back out to discuss different things we might qualify for....Noah will likely be eligible for nearly everything they offer she said which is great....including medical coverage AND coverage for me. What a relief that will be if needed...and this includes vision, dental, etc.

We might also qualify for rent assistance if I decide to rent and not buy.

I am in the process of setting up a tour at the Nicholas School in Piqua...which is:
HAHN~HUFFORD CENTER OF HOPE
Rehabilitation Center for Neurological Development
Nicholas School
The Brain Wellness Center
Aquatic Therapy & Wellness Center

An ungraded special-needs school for students in grades K-8

*Students are instructed academically according to the Ohio Department of Education Operating Standards for Elementary and Secondary Schools

*A developmentally oriented program that incorporates perceptual motor skill training into the academic setting through individual or small group classes

* Day School - Provides a setting where students can succeed by stimulating the neurological processes of visual, auditory, tactile and motor skills.

It was the dream and vision of the founders to provide children with various learning disorders the opportunity to be educated in a setting where they could achieve their maximum potential both physically and academically.

Nicholas School serves children with learning disabilities, ADD/ADHD, Autism, Tourette's, Down's Syndrome, and other effects of brain injury

so that could be a good place for him if it works out...and the county MAY help pay or pay for the entire thing...not sure. The lady will come out next week to discuss all the possible options available for Noah and help get them set up.

So....things are moving along. It does appear he is able to get a lot MORE help than he ever could in Colorado. Not exactly sure WHY that is...perhaps too because I am by myself now...and only working part-time so income wise we are more eligible now.

Anyway..I will keep everyone posted

check out the school and all it offers here:

http://www.rcnd.org/Nschool.html

Service Help Dogs

Apparently there is a family who are moving and cannot take their autism assistance dog with them...female...spayed....all shots...5-6 years old...name of Patches. Noah could get the dog for free if we can work something out. Course right now still being in grandma's house poses a problem.....

AUTISM ASSISTANCE DOG

4 Paws was the first agency to begin placing skilled Autism Assistance Dogs and continues to be the largest organization in the United States and the only organization placing in other Countries Autism Assistance Dogs with tracking. While other smaller organizations are attempting to duplicate our services 4 Paws remains the organization that services such as the National Autism Center recommend to their families. Having placed well over 50 Autism Assistance Dogs, this type of dog continues to be the most requested and most often placed dog of all of our services. As the founding agency of Autism Assistance Dogs with tracking we continue to provide the highest quality of dogs to every child that applies. 4 Paws, unlike almost every other agency does not pick and choose who's child will get a dog. As long as the child's physician approves the dog and it is safe to place a dog in the home, no family is turned away. We continue our services with no long waiting lists and continue as always to "partner" with our families to provide the dog their child needs. In addition, our online group for 4 Paws Families has a membership of 80+ dogs. With a group of families, all either having, or in the process of obtaining a service dog from our agency, all in one place with access to each other it is obvious that our families love their dogs and are very happy with our service dogs. They feel that being a part of the 4 Paws family as an honor and are happy to remain on our online network to help the next group of families find the same happiness they did in a friend with 4 Paws.

Children with disabilities present a unique challenge to parents. Autism presents even more unique challenges than other more prevalent disabilities. The child with Autism does not connect well with their environment. Autism manifests itself most strikingly as impairments in communication and in the formation of social relationships. Children with Autism are often nonverbal or when they are verbal they usually do not use the skill to actively communicate with other people in their environment. Many children with this disability have a strong need for a structured, routine environment; change creates feelings or fear and/or anxiety. Some children even exhibit serious behavioral changes including, at times, self-injury.

"While Scooby may love cats more than the cats would prefer, Autism Assistance Dog, Scooby is the friend Tyler has waited so long to find. Scooby knows nothing of the word 'different'; in Scooby's eyes Tyler is the perfect friend just the way he is." Tyler loves Scooby like he has never been able to love a person. He kisses him all the time. He is so proud too. He announces everywhere we go, "This is Scooby, my service dog. Scooby, meet _________. Scooby is the best dog in the world!" This might sound strange, but Scooby brought Tyler over the "kissing" hurdle. Tyler could not stand to kiss before Scooby. He would allow me to kiss his cheek or forehead, but would never kiss back or let you kiss his lips. He kisses me know and even kissed me on the lips once. He said , "I'm kinda gettin' used to that. Scooby kisses me too." What a gift!!!! Thank you for Scooby and all he has brought to our family. We wouldn't be complete without him. Woof!!!!! Love, Linda and Tyler

Another behavior common to Autism is a tendency to wander away. Parents often refer to their children as “Houdini,” stating they are able to escape from even the most secured environment and the family usually has multiple locks on every door and window in the home. When this happens, the child may be in a life-threatening situation, especially if they are already out of the physical sight of their caregiver. Children with Autism often don’t respond to their names consistently, if they respond at all. They rarely understand the many dangers in their environment; an approaching car; a stranger with ill intentions; an aggressive dog separated from the child by nothing more than a gate, which is quite easily opened. Many parents report that their greatest fears center around their child being missing or when out with their child that they might look away only for a minute and turn to find their child gone or darting out into the path of an oncoming car.

"Joshua Melton, meets Autism Assistance Dog, Skeeter for the first time"

No one knows exactly what causes Autism but the children often appear to live in a world we have little understanding of. Often they participate in ritualistic and repetitive behaviors, sometimes for hours at a time. They may spin a coin on the floor, flap their hands in their face, or filter sand through their fingers. Many times parents report that a hand placed on their child’s arm for only a brief second might cease the repetitive behavior for several minutes or longer. Some researchers believe that children with Autism have a heightened level of sensory input; at times resulting in sensory overload.

A child in a gym may become agitated; holding their hands over their ears and repeating moaning type verbalizations when a basketball is being bounced on the floor over and over, and cease the behavior the minute they are moved to a quieter room.

At 4 Paws we have discovered a magic that exists between children and dogs, a magic that can become a life-saving miracle for a child paired with one of our Autism Assistance Dogs. One of the tasks the dogs can be trained to do, that is unique to 4 Paws For Ability TM, Inc. is the ability to track a child that has wandered away, even if the child has been missing for quite some time!

"Patrick Eggleston and Autism Assistance Dog, Mojo"

When a child with Autism disappears their life is in danger and an adult looking for them may begin their search in the wrong direction; while a 4 Paws Autism Assistance Dog trained in search and rescue never takes the wrong path and quickly leads the adult to the missing child!

While the needs of each child are unique, all of the families contacting 4 Paws have one very important common need; every family reports that their child has few, if any, friends. Other children don’t understand their behaviors and even higher functioning children, often diagnosed with Asperger’s Syndrome, are not able to form the social relationships needed to sustain friendships, even at the elementary school level. Asperger’s is exceptionally difficult for parents, who watch as the disability interferes in their child’s life, as the children most often know that the other children are making fun of them and/or leaving them behind as they form their social groups. One child getting an Autism Assistance Dog spoke to 4 Paws staff during his interview. He told us that he was from another planet where no one makes fun of people who are different. His mother reported that the teasing he received at school had so seriously affected his life that he tried to commit suicide by over-dosing on medication.

On a quiet train ride through the zoo, Noelle sits by herself. While previously her Mom would have had a death grip on her, with Noelle safely tethered to her service dog, Reagan, fun is had by all.

At 4 Paws we find it intriguing that there are so many families with our Autism Assistance Dogs, that report their child has formed or is forming, what appears to be a close relationship with their dog partners. It is interesting to say the least that we have found the children in our program are able to relate to their dogs in ways that they were unable to with humans. Our research indicates that the child with Autism displays behaviors toward their dog that they rarely, if ever, display towards human companions. In addition, the child that is partnered with a 4 Paws dog is found to seek their dog out for companionship, comfort, and confiding in ways never shown to family members. One of our children that has a 4 Paws Autism Assistance dog, is a three year old child who has the ability to communicate verbally but rarely, if ever, chooses to use it until a wonder-dog named Harley entered her life. Within a week she could be found giving her new doggie partner commands to sit, down, stay, and come. In addition, she would spend hours laying on top the cuddly hound type dog, whispering secrets in his ear. We would all like to know the secrets of a three year old child with Autism, but Harley is a true to the end, “best friend” who will never share the secrets she has entrusted him with!

Some parents of children with 4 Paws Autism Assistance Dogs report their child has showed greater sensitivity towards the needs and feelings of the dog, together with a lack of anger and aggression. In spite of a strong dislike by many children with Autism to being touched and/or hugged there appears to be an evident enjoyment of tactile stimulation and comfort level with the dog. What we here at 4 Paws have seen time after time in our Autism Assistance Dog Program shows that the child with Autism may be able to demonstrate behaviors toward their dog that they do not display to people, even family members, and which are similar to those associated with close relationships.

So, we take the child with Autism and all the difficulties they have with verbalization, communication, and social relationships and pair them with a well trained quality service dog specifically trained to meet their unique needs; to create a consistency in the child’s life as their dogs go every where that they go, even within places of public accommodation, and the educational system bringing along with them: consistency, stability, and calm reassurance that the feelings of anxiety or fear are not needed because the trusted buddy is by their side. As they meet their dog partners and develop the bond that we have been speaking of; an unconditional, unconventional, and a miraculous loving friendship is developed and with each day passing, grows stronger, bringing along with it, a chance that the child may transfer their new social relationship to the humans in their environment as well.

While Noah's family once had to hold onto him whenever daring to do some shopping. Noah now walks calmly beside his 4 Paws service dog Murphy, holding to a second leash and entertains himself playing with Murphy's ear.

Sophie, is shown here tethered to her Autism Assistance Dog, Bob at a local mall!

There are several additional skills that we at 4 Paws have developed to assist the child with everyday comforting, and behavioral management. When the child engages in repetitive behaviors as discussed above and when a simple hand placement on the child is all that is needed to have the behavior cease, at least for a few minutes but often even for hours, a service dog trained specifically to respond to a child’s most repetitive behaviors is just what they needed. We use the behavior the child engages in to trigger a behavior in the dog. So for example, the behaviors of a child that jumps and flaps their hands in front of their face has been used as a hand signal for the dog to lay their nose or foot on the child, gently nudging them to stop the repetitive behavior, even if for a few minutes. For adults, the continuous nudges or hand placement they engage in to stop their child’s unique, repetitious behaviors can become burdensome and/or frustrating.

However, for the dog, it’s a game and as long as they receive an occasional reward at various intervals, while they are nudging the child over-and-over again, the dog finds the situation quite fun; a job that allows them to do what they do best…encourage the child to cease repetitious behaviors and in nudging the child there comes a possibility that the child may decide petting the dog, playing ball with them, or simply cuddling with them to be more impacting on their life than the need to engage in repetitive behaviors.

	BEHAVIOR DISRUPTION - Touch

Another skill that is sometimes requested by parents with children who have Autism, is the ability to have their child walking in front of them rather than their having to have their hand on the child at all times. In these instances a longer leash is used by the parent, which allows them to be in total control of the dog while they are teaching their child a new routine holding a second, shorter leash as they walk beside their new partners. As they approach the street, the 4 Paws dog is trained to stop and sit any time the parent requests them to and it is hoped that when the dog stops to sit the child will also stop, even if for a minute, giving the parent the time to catch up to the child and assist them in crossing the street safely. It is also possible for families to actually tether their child to the dog from the dogs harness to the child's belt loop. The parents maintain the child's safety by holding a leash attached to the dog to easily stop the dog using basic obedience commands. In this manner, parents may engage in such tasks as writing a check for their groceries without the fear their child will disappear in the few moments it takes to look at the check as you write it. Parents can ask the dog to either "stop" momentarily or "stop and sit/down" when more time is needed.

BEHAVIOR DISRUPTION - Lap

The mission off our Autism Assistance Dog Program is to provide friendship, companionship, unconventional, and unconditional love for the child. A source of comfort and consistency when environments change and anxiety might be high, to help the children with Autism and the other family members find a higher quality of life and bring a more independent life to the child and the support to encounter problems and obstacles set in front of them by Autism and overcome any challenges that they are confronted by.

It is also our hope to provide a dog that will be the child’s best friend and buddy, so that the child will relate to the dog on a higher social level than they ever experienced before, and transfer these accomplishments to the humans which also live within their home and/or school environment.

With the number of children currently being diagnosed with disabilities falling in the Autism spectrum, at an increasingly higher frequency and at much younger ages that ever before; the need for Autism Service Dogs is on the rise. 4 Paws is proud to be the Autism Assistance Dog Program most recognized by national Autism organizations. We seek every day to develop more ways in which our dogs can help families with children that have Autism. We encourage parents to ask us about any situation, no matter how silly it may seem to them, which they hope a dog could help with; if it can be done and completed in such a fashion as to not effect safety issues for either the child or the dog, we will give it our best shot.

All over the country teachers and therapists have found that including therapy dogs or service dogs placed with children, into their therapy sessions, shows a marked increase in the child’s participation and functional level.

If you think an Autism Assistance Dog would benefit your child, please take a moment to read about how our program works at www.4pawsforability.org . Look for the page link on the left side of the homepage that reads “How Our Program Works” and if you feel this program will work for you, download the child application right off the homepage using the button that says “child application”. The 4 Paws recipient and their family are involved in the entire process, from application, through fundraising, and on to training. When the time comes to chose the dog, we take into account the family dynamics, their preferences for certain breeds of dogs, color, sex, size, and coat type. The dog is then chosen specifically to meet the child’s needs. Once we decide on a dog, a picture is sent and the child can name the dog. We want our families to know the dog is theirs, the dog will help them, and the dog will be in their possession quickly because they are working to make that happen!

David, who received the first 4 Paws Autism Assistance Dog placed in Canada, meets his k9 partner, Kai for the first time. Kia seems to understand that David needs some space to get used to having her with him. How dogs know what they do is a mystery we will never find the answer to but when it comes to children with Autism, this mystery of how the dogs know just what their young partners need, is nothing less than magical.

At 4 Paws, we understand the unique challenges for children with Autism. Because we are training parents and not children, though it is good when the child can attend the training, we do not require children with Autism travel. Only one parent needs to attend the training.

4 Paws For Ability TM™, Inc. a non-profit agency taking the ‘dis’ out of disABILITY!™ 253 Dayton Ave. Xenia, Ohio 45385 training center 937-374- 0385 cell phone number 513-518-0529 or karen4paws@aol.com

Noah last night

So last night Noah started crying at bedtime. He wanted "company" in his bed. I said "company?" and he proceeded to tell me how he needed company in his bed again to sleep. I said "well you have Mr. Teddy" and he said "but he is just a toy", "I need a real person to be in bed with me". "I need you to sleep with me again or me to be in your bed".

This about broke my heart. For years I had allowed Noah to just sleep in my bed cause I was always in there sleeping alone anyway....and.....with his autism and the fact that he would sometimes wake up at night and maybe I could not hear where he went or what he did I figured if he was in the room with me and in the same bed I would be aware of his comings and goings and he would be safer. I felt safer having him in there with me all the time. He must have felt more secure and safer as well cause he did not get up and try to go out the front door anymore..etc.

SO this went on for a long time. As he started to get older I thought perhaps I needed to try to get him to start sleeping in his own bed again. As an infant and young toddler he had no problems with it. BUT I have to also admit I enjoyed him sleeping with me. Sharing that special time with him....knowing it would not last forever.....savoring every moment where he would be lying beside me....and looking so sweetly as he would be breathing....with such a peaceful look on his face. I told myself well..he will one day get to where he will not want to sleep with mommy anymore and this will be lost in time forever. SO I savored it more. Then I realized perhaps I was making him co-dependent on me to sleep....to just live in the world. I also realized as a parent it is my job to prepare him to be an independent person one day in life. AND to NOT be afraid to be so but to desire it. SO I KNEW at 7 it was time to start making this transition. I had talked to a doctor about it prior to my moving back to Ohio. Because of Noah's special needs and autism it is not totally uncommon to have a child like him sleep in bed with the parents for a long time....age 9....12......who knows...maybe in the same "room" forever. BUT I KNEW I could not let this happen...it would not be in the best interest for Noah.

SO I had started working with him to get him sleeping by himself in Colorado. He was in "my" bed but sleeping by himself as I was sleeping on the sofa. He seemed to do well in a larger bed...maybe that was all there was to it.

SINCE our move to grandma's house...he picked her sleigh bed to sleep in and has had no problems sleeping alone and being a big boy about it all..WITHOUT any prompting from me....until last night. When he suddenly was wanting to share that time with me again. I have to say I was tempted. I was tempted to let him slip into my bed or go into his room later and crawl into bed with him. BUT I also knew...I could not do that...for it would mean all the steps forward he had taken would be shot back to step one again. SO I DID NOT.

This morning however I found him in my bed......he had gotten up to pee...and apparently crawled into bed with me right before I woke up. WHEN I woke up...I saw him there WITH Mr. Teddy. I asked him what he was doing ....he said "Me and Mr. Teddy decided we wanted a little company". So sweet...so we snuggled up a bit...before getting up to start our days.

All this however has drummed up all kinds of emotions in me. I have always understood the realization that certain parts of your lifetime are only temporary...and the fact that you need to enjoy them while they last.....I know kids do not stay kids forever. I savor every moment in time I can with Noah while each one lasts. KNOWING all too well soon he will be a pre-teen...then teen...and a young adult...and then a man. My part in his life to shape him and prepare him for HIS journey in HIS life in THIS world will basically be over then. Those sweet nights I have treasured for so long will become memories to recall as I get older.......and I sit here with tears in my eyes....realizing that special time for "us" is most likely over forever.......and I have to wonder if I will ever be able to see him in any other way...other than that most precious little boy he once was.

I will love you for eternity Noah...my most precious "little" man

Noah Playing in the Snow

Noah and Snow

Update

Noah and I checked out the local schools on Thursday last week. I was impressed with their knowledge and willingness to really find the best fit for Noah...so public school MIGHT be an option in the future....though I prefer still continuing with homeschooling for now.

I have been torn lately as I can only work part-time.....and though I had wanted to transition back to full time by the end of summer...I think I finally realized with the dissolutionment...that it may not be possible. I have to devote much more time now to caring for Noah.....and I would not have enough hours in the day to work 8 and then do all the other things for Noah including therapies and homeschooling. SO....the reality hit me I may have to continue on with part-time work in order to have the time for him AND to qualify for more aid for him.

So...the woman from the county came out today. We were to review what benefits might be available for Noah....and it sounds like he will be eligible for many. MORE than he was in Colorado where he was basically denied benefits. My case worker came to grandma's house today and assessed Noah and his/my needs. Academically she said he was great and would not qualify as he passed with flying colors. In fact she had him read a paragraph and then answer some questions. He read it perfectly and answered all the questions. When he left the room she told me that they are only required to read a couple of sentences and answer 1-2 questions but he read the entire story AND answered each question and correctly. THEN she told me it was a story that was made for kids who are 9-10 years old. Noah just turned 7. SO he did great. He did all the time questions correctly. He did all the money questions and counted out money to her in any amount she asked him to. He is fine academically. BUT he would meet the criteria for other aids and benefits so we will begin that process...which will be a lengthy one but this woman was so helpful. We will also begin the SSI and Medicaid process as he most likely would also qualify for those benefits and that would only help him in the long-run. Medicaid actually pays for more things than private insurance does and I will eventually lose that coverage for Noah.

Apparently I can even get benefits and help.....including Medical/Health Coverage for the both of us....housing help...etc. I was stunned. I had no idea about all that. SO I have much to think about. Cause if I continue working part-time....I can get the most for NOAH...and more help for him...and actually have more time for him too...that I can use for his therapies and homeschooling, etc. ...and since I would have less income....he would get MORE benefits and aid....which would only be better for him. I had planned on transitioning back to full time work by the end of summer. SO I have a lot to think about. Apparently if I make too much money some of the benefits I might be able to get for him might end? Or change at the very least. SO I have to be careful and make the best choices.

This also might affect housing. I can still BUY a house....but....if I am only working part-time....a lot will then depend on whether or not I can afford to continue buying a house. I guess with my income and child support AND his benefits perhaps I still could. I will have to do some quick math. I have to admit the idea of only having to do part-time work would be a relief...as his needs and care are taking up a lot more of my time now that I am the ONLY one taking care of him. According to this woman today I can even get respite care...(WHICH I had heard about before) and someone to help watch Noah during the day when I work if needed..which would be great so I can actually SLEEP again at nighttime! SO NEED that!

SO I have a lot to do and think about...but it was so nice to see some light at the end of the tunnel. Now to press forward and see where it takes us!

Dear Noah:

I had no idea there were only five finalists out of thousands of pics sent in. Noah was one of the five so his pic along with the pics of the other 4 finalists appeared in this month's issue of Autism Quarterly Spectrum Magazine. Here is a link to see the goods up close and personal. Needless to say Noah got very excited to see his picture in the magazine.

Dear Noah:

Noah and I had a very busy SOCIAL weekend this past weekend. Something we know little of since for the past 8 1/2 years in Colorado we never experienced it. While living there we just had no one to do anything with..it was always just us. SO...this has been nice...but also a bit overwhelming sometimes for Noah though he is loving it!

Saturday we went to Melissa's for Audrey's birthday party....we had a blast. I love Audrey so much. She is such a joy and treat to be around...hilariously grown up for her age! She seems to finally have taken to me and loves playing with me too...so I spent a lot of time upstairs in her room with her and Noah. Course I also got to see my sisters and mom and dad...it was all a great day! Here are a few photos from that:









me and the kids upstairs...some turned out with a weird red glow that was actually kinda cool....there was not much lighting up there





and Audrey and me with BIRTHDAY CROWNS ON



We had a great time.....and Melissa's cat Sevvy is a trip! SOOO sweet and lovable....like dead weight in your arms...wanting to be loved on....he was amazing too. We had cake, ice cream....and lots of fun and laughs. Noah and I stayed and had pizza with Melissa and her ex and his partner that night....more fun. I know it sounds strange but we did. Anyway......

Sunday my sister Angela was going to make a new recipe for lasagna...so I basically invited myself over for dinner and she said OKAY! YAHOOO! Noah and I packed up and went...we got lost about 3 times on the way...I was talking to Tony the entire time which was good so I did not get too nervous or freak out about getting a bit lost. Finally got there after I met Gary at a Speedway to direct me the rest of the way to their house but by that time I already knew where I was. Next time it will be HIGHWAY driving for me to and from there all the way! SO MUCH easier and quicker.

The meal was SUPERB! The best meal (AND company) I have had in ages! She made this fantastic lasagna which was the BEST! My mouth is watering thinking about it. She also made a balsamic vinegar dressing for a fantastic salad she made up..and we had French baguette bread. I WiSH I had pics...but none.

Anyway...we had just sat down at the dinner table...Angela was serving the salad with tongs....well..we served ourself. I used the tongs..put some salad on my plate...BUT FORGOT TO RELEASE the tongs prior to putting them back into the salad bowl. Needless to say....they opened upon my dropping them into the bowl of salad...where they promptly FLIPPED OPEN and spewed bits of cheese, salad and onions all over ME..the table and the floor! I am laughing hysterically even today thinking about it. I had cheese and salad greens down my bra.....and looked around...Alex just sat there dumbfounded I think afraid to laugh....I busted out...and then could not stop. I about fell off my chair laughing so hard...and then Angela, Gary and Alex got to laughing at me laughing. I swear I could have peed my pants! It was soo hilarious!!!! I wish it was caught on film but only in the memories of my mind now. Anyway...after about 10 minutes of extreme laughing I calmed down enough to complete my orgasmic meal! WHICH IS how I would describe it...hahah....orgasmic....it was all so damn good!!!

HUM...maybe I should move closer to Angela's house..so I could invite myself over for dinner more often? hee hee

Then later she offered me some Sneaky Petes....OH MY MY MY MY! TOO easy to drink those....but they were good. I only had a tiny bit since I was to drive later back to grandma's house.

SO Noah played with Alex the entire time upstairs. Angela's apartment is decorated up very nicely. She always has a knack for that. So serene and peaceful environment....Buddhas all over the place.....simply beautiful. Her bedroom is out of this world gorgeous! SO romantic and sensual....red glass goblets with candles inside.....dark maroon beaded netting crowing the bed......luxurious gold trimmed bedding and pillows...more Buddhas....just gorgeous and seductive. I had to crawl under the beaded bedding to see what it would feel like sleeping in there (or other things) and it was amazing. I hope I can have a sensual and serene bedroom like that one day.

Then she showed me some of the artwork she has been working on. I do have to admit all us kids are talented in some way or another. Angela started out scrapbooking photographs into amazing albums...but has branched out with cardmaking and stamping and more. She is truly talented and SHOULD be doing that full time for a business as she would have no problems with people snatching up her stuff! It seems to be a passion of hers too and she is very very good at it.

SO...I had a great weekend...did not get anything done here I should have but instead had a more enjoyable time with my family.....which I have not done in YEARS! VERY good for the soul!

Stress on families with autistic kids

Stress on Families
Stress - something parents in general are all too familiar with. There is the physical stress from carpools, preparing meals, bathing, homework, shopping, and so on. This is compounded by such psychological stressors as parent-child conflicts, not having enough time to complete responsibilities and concern regarding a child's well-being. When a family has a child diagnosed with autism, unique stressors are added.

Sources of Stress for Parents

Deficits and Behaviors of Autism. Research indicates that parents of children with autism experience greater stress than parents of children with mental retardation and Down Syndrome. (Holroyd & McArthur, 1976; Donovan, 1988). This may be a result of the distinct characteristics that individuals with autism exhibit. An individual with autism may not be able to express their basic wants or needs. Therefore, parents are left playing a guessing game. Is the child crying because he/she are thirsty, hungry, or sick? When the parent cannot determine their child's needs, both are left feeling frustrated. The child's frustration can lead to aggressive or selfinjurious behaviors that threaten their safety and the safety of other family members (e.g. siblings). Stereotypic and compulsive behaviors concern parents since they appear peculiar and interfere with functioning and learning.

A child's deficits in social skills, such as the lack of appropriate play, are also stressful for families. Individuals lacking appropriate leisure skills often require constant structure of their time, a task not feasible to accomplish in the home environment. Finally, many families struggle with the additional challenges of getting their child to sleep through the night or eat a wider variety of foods. All of these deficits and behaviors are physically exhausting for families and emotionally draining.

However, in families of children with autism this is a challenge. Scheduled dinner times may not be successful due to the child's inability to sit appropriately for extended periods of time. Bedtime routines can be interrupted by difficulties sleeping. Maladaptive behaviors may prevent families from attending events together. For example, Mom might have to stay home while Dad takes the sibling to their soccer game. Not being able to do things as a family can impact the marital relationship. In addition, spouses often cannot spend time alone due to their extreme parenting demands and the lack of qualified staff to watch a child with autism in their absence.

Reactions from Society and Feelings of Isolation.

Taking an individual with autism out into the community can be a source of stress for parents. People may stare, make comments or fail to understand any mishaps or behaviors that may occur. For example, individuals with autism have been seen taking a stranger's food right off their plate. As a result of these potential experiences, families often feel uncomfortable taking their child to the homes of friends or relatives. This makes holidays an especially difficult time for these families. Feeling like they cannot socialize or relate to others, parents of children with autism may experience a sense of isolation from their friends, relatives and community.

Concerns Over Future Caregiving.

One of the most significant sources of stress is the concern regarding future caregiving. Parents know that they provide their child with exceptional care. They fear that no one will take care of their child like they do. There may also be no other family members willing or capable of accomplishing this task. Even though parents try and fight off thinking about the future, these thoughts and worries are still continually present.

Finances.

Having a child with autism can drain a family's resources due to expenses such as evaluations, home programs, and various therapies. Because one parent might give up his or her job because of the caregiving demands of raising a child with autism, financial strains may be exacerbated by only having one income to support all of the families' needs.

Feelings of Grief.

Parents of children with autism are grieving the loss of the "typical" child that they expect ed to have. In addition, parents are grieving the loss of lifestyle that they expected for themselves and family. The feelings of grief that parents experience can be a source of stress due its ongoing nature. Current theories of grief suggest that parents of children with developmental disabilities experience episodes of grief throughout the life cycle as dif ferent events (eg. birthdays, holi days, unending caregiving) trig ger grief reactions (Worthington, 1994). Experiencing "chronic sorrow" is a psychological stres sor that can be frustrating, con fusing and depressing.

Sources of Stress for Siblings

There are also potential sources of stress for siblings. Not all siblings will experience these issues, but here are some to be aware of:

Embarrassment around peers. Jealousy regarding amount of time parents spend with their brother/sister
Frustration over not being able to engage or get a response from their brother/sister
Being the target of aggressive behaviors
Trying to make up for the deficits of their brother/sister
Concern regarding their parents stress and grief
Concern over their role in future caregiving

Sources of Stress for Grandparents

Like parents, grandparents can grieve over the loss of the "typical" grandchild they expected to have. In addition, grandparents are concerned about the stress and difficult situations they see their children experiencing. Many grandparents want to help but they often face two obstacles. First, most of them do not have the training in behavior management that is required to handle behavioral episodes. They may offer advice related to their experiences, but these may not be successful for individuals with autism. This can cause parents to become frustrated when they perceive the grandparents as not understanding their situations. Second, grandparents may not be physically able to manage the behaviors of individuals with autism. Grandparents just want to play with their grandchildren and "spoil" them to death. Unfortunately, autism prevents them from achieving either of these desires.

What Can Be Done To Address Family Stress

Luckily, parents can take action to address the stress that they experience. I acknowledge that accessing services or doing any additional tasks can be overwhelming, considering what family members are already dealing with on a daily basis. However, remember that it is only by taking action that challenges can be directly tackled. Below are some suggestions for family members to get started with in enhancing their family functioning.

Take Time For Yourself and Other Family Members.
In order to avoid burnout, parents must make time for themselves. Parents often respond to this suggestion by saying that they don't have any time to do that. However, what you need to keep in mind is that even a few minutes a day can make a difference. Some parents just do such simple things as apply hand lotion or cook their favorite dinners to make themselves feel better. Parents, just like individuals with autism, need rewards in order to be motivated. Parents who have children with autism have even more of a need to reward themselves, because parenting their child is often frustrating and stressful.

In addition to rewarding themselves, family members need to reward one another. Spouses need to acknowledge the hard work that each is achieving. Also remember to thank siblings for watching or helping out their brothers and sisters. It is also important that spouses try to spend some time alone. Again, the quantity of time is not as important as the quality. This may include watching television together when the children are asleep, going out to dinner, or meeting for
lunch when the children are in school.

Families may also want to occasionally engage in activities without the individual with autism. This may include mom, dad and the siblings attending an amusement park together. Often families feel guilty not including the individual with autism, but everyone deserves to enjoy time together that is not threatened by the challenges of autism.

Access Medicaid Waiver Programs

Under this program, a parent's income is waived when determining eligibility for Medicaid. Participants in this program receive Medicaid and Waiver services. Again, waiver services available vary between states. In addition, not all states provide Medicaid Waiver Services. In the State of New York, there is a high demand for waiver respite and residential habilitation. Residential Habilitation consists of in-home programming for individuals. Contact the Developmental Disabilities Council in your state to obtain additional information or the Health
Care Financing Administration (HCFA).

These programs are geared towards providing services to families who have a child living at home. It is through these programs that families can gain skills, maintain structure for their child and get a break from caregiving. Funding sources for these services vary by state. In addition, some states may not offer such services. Contact the Developmental Disabilities Council in your state to find out more information regarding these services.

Apply For Financial Resources/ Benefits

Federal Old Age, Survivors and Disability Insurance Benefits - a Federal Social Security cash benefit available to someone who has contributed to the social security fund and becomes disabled. Spouses and dependent children are also eligible for benefits if the primary beneficiary becomes disabled, retires or dies. Recipients of this benefit also receive Medicare. Contact your local Social Security Offices for more information.

Supplemental Security Income (SSI) - a Federal Social Security cash benefit available to the disabled who show financial need. A parent's income is used to determine eligibility for all applicants under the age of 18. Recipients of this benefit also receive Medicaid. Contact your local Social Security Office to apply.

Special Needs Trust/Supplemental Needs Trust - A trust where the resources are not considered in determining eligibility for government benefits (551, Medicaid). Money in this trust can be used to supplement or augment services that Medicaid does not cover (e.g. vacations or extra therapies). Families should contact an attorney with experience in estate planning and developmental disabilities to set up such a trust.

Family Reimbursement Programs - Reimbursement for services not covered under other means such as Medicaid. Services reimbursed may include respite, camps, educational materials, therapies, etc. Contact the Developmental Disabilities Council in your state for more information.

Access A Service Coordinator/ Case Manager

Families should begin their quest for resources by obtaining a Service Coordinator, otherwise known as a Case Manager. This is an individual who assesses a family's needs and links them to available services and resources. They can help with filling out paperwork and making phone calls to agencies. Sources of funding for this service can come through Medicaid as well as Early

Intervention and State Developmental Disabilities Offices.

Network With Other Families Affected by Autism or Another Disability

It gives us comfort to know that we are not the only ones experiencing a particularly stressful situation. In addition, one can get the most useful advise from others struggling with the same challenges. Support groups for parents, siblings and grandparents are available through educational programs, parent resource centers, autism societies and Developmental Disabilities Offices. In addition, there are now online supports available for family members.

Other Strategies to Address Stress

When it comes to reducing stress, be creative. You may want to consider one or more of the following approaches:
Prayer
Exercise
Deep breathing / relaxation exercises
Writing in a journal
Keeping a daily schedule of things to accomplish
Advocacy
Individual, marital or family counseling

If you or a family member is exhibiting signs of stress, you need to take action. Even if it takes the last bit of energy you have left, getting assistance can only make things get better. Yes, waiting lists, burdensome paperwork and bureaucracy can make accessing supports stressful but in the long run, it will be worth it.

Note: This section was provided by Adrianne Horowitz, CSW, Director of Family Services for the Eden II Programs for Autistic Children