Keeping Our Loved Ones with ASD Safe

By Jan Randall

Andrew was about 6 or 7 years old on that cold overcast day in March when I came home from shopping to have my husband Bob tell me that Andrew had wandered off. He told me that while I was gone, our neighbor, 3 houses down, who we did not know, called to say Andrew was in their back yard, standing on their pool deck.

To say I was freaked out is an understatement, never mind the fact that I was furious that Bob had not even noticed that Andrew had wandered off. Obviously, Bob was also upset this happened. He also got an important wake-up call that Andrew needed to be much more closely watched than he thought.

We were VERY LUCKY that a tragedy was averted that day. Andrew loved, (and still does love) pools, and water of any kind. If he had decided to try and walk on the pool cover he could have been easily trapped and drowned. Even if Bob had noticed that Andrew was missing before the neighbor called, he probably would have been completely panicked. I know I would have been. He would have called the police, but beyond that call we were not at all prepared for a wandering incident.

For individuals with ASD wandering, bolting, eloping, can occur at any time of year, at any age or ability level. These 4 incidents are all from this year:

According to the National Autism Association (NAA) “a 2012 study in Pediatrics, reported 49% of children with ASD have a tendency to wander or bolt from safe settings”. They also found that in the years 2009, 2010, and 2011, “accidental drowning accounted for 91% total U.S. deaths reported in children with autism ages 14 and younger subsequent to wandering/elopement. 68% of these deaths happened in a nearby pond, lake, creek or river.”

Although we really never had a serious issue with Andrew wandering, and were able to teach to him to never leave the yard by using visual boundaries, not all parents are so lucky. The AWWARE Collaboration states “wandering… ranked among the most stressful autism behaviors by 58% of parents of elopers.”

In the article Autism and Wandering AWWARE states, “Wandering and elopement tend to increase in warmer months… where home layouts and routines are adapted to accommodate changing weather. Persons with autism are also more likely to play outside or attend summer or day camps during this time.”

With spring fully here in New England, and summer just around the corner, it is important we are knowledgeable not only about the dangers of wandering, but all of the tools that are available to help.

When thinking about keeping our sons and daughters safe from the dangers of wandering or bolting, most parents turn to getting some kind of tracking device. Today, we are lucky to have a myriad of devices (see Best GPS Trackers of 2019)  to consider for each person’s and family’s individual circumstances, but tracking devices are only one tool in the ASD safety tool box.

As mentioned above, 91% of fatal events due to wandering were the result of drowning, the NAA also notes that 32% of parents of children who wandered “reported a “close call” with a possible drowning”. This is why it is crucial, (if possible) that ALL individuals with Autism learn to swim. This link for YMCAs that offer special needs swim instruction is a great tool. Community Autism Resources also has a referral list for places to find swim instruction.

Even with all of the wandering prevention tools and tracking devices we have available, what cannot be overlooked are vital tools that can be used in the event that an individual with ASD does wander off. Two of my favorites are: The Family Wandering Emergency Plan in which parents can detail important information, a sequence of steps to take, and people to contact should their son or daughter wander. This is a vital tool that every parent, grandparents and caregiver to someone with ASD have in their home. I also love the Personal Emergency Profile with Symbols that parents can fill out and share with their local first responders. This is a great tool that grandparents, family members or other caregivers can share with their town’s first responders, in case a wandering event happens in someone else’s home.  Both of these tools are part of the NAA’s Big Red Safety Box program. Their digital tool kits can be downloaded using these links: Caregiver Toolkit | First Responder Toolkit | Teacher Toolkit

As parents we can never ever completely let our guard down when it comes to our son or daughter’s safety. I am fully mindful of the fact that no matter how confident I feel that my now adult son has a good understanding of the importance of never leaving our yard, or going off on his own, I can never say never when it comes to wandering. That would just be foolish. It is up to parents, caregivers and even teachers to make sure we use the resources and tools that are available. My hope is that as we do, the future will show a reduction in wandering ‘close calls’ injuries and deaths.

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Don’t Throw the Baby Out with the Bath Water

“Typing to communicate or Facilitated Communication (FC) is a form of Alternative and Augmentative Communication (AAC) in which people with disabilities and communication impairments express themselves by pointing (e.g., at pictures, letters, or objects) and, more commonly, by typing (e.g., with a keyboard). The method involves a communication partner who may provide emotional encouragement, communication supports (e.g., monitoring to make sure the person looks at the keyboard and checks for typographical errors), and a variety of physical supports, for example to provide backward resistance, to slow and stabilize the person’s movement, to inhibit impulsive pointing, or support rhythm; the facilitator should never move or lead the person.”(Syracuse University Institute of Communication and Inclusion)

The American Speech-Language-Hearing Association (ASHA recently approved position statements that strongly discouraged the use of facilitated communication, rapid prompting method, and similar practices. These position statements have generated great concern in corners of the autism community, as they see it as undermining “access to communication supports for individuals who have no equally effective alternate forms of communication” (Autism Self Advocacy Network).

The controversy about Facilitated Communication began very soon after its introduction in this country in the early 1990’s. Amazing and also disturbing results of the use of FC are well documented in the history of its use. The introduction of the technique in the US was, in my opinion, not well thought out in terms of what training needed to be provided to facilitators, how assessment of progress would be conducted, and what would be the proper ways to assess the authorship of the communication. The whole idea of facilitator influence and how that should be addressed in the training on FC was not addressed adequately to prevent the issues that developed around authorship and the monumental effect that confusion had on many people’s lives At the time the message many took away when introduced to FC was to go to a training and go home and try it. Unfortunate results can arise from poor planning and execution. However, the communication strategies available to an individual should not be limited by such unfortunate outcomes. It is important to note that Syracuse has now developed a ICI Training Standards Manual which outlines a detailed framework for training and technical assistance.

I remember the controversy regarding Facilitated Communication well as my son used FC for a short time. While I understand the concerns that have been raised, I return to one of my mother’s frequent sayings, “don’t throw the baby out with the bathwater”.

A positive off shoot of the introduction of facilitated communication was some renewed interest in movement issues in Autism, that had been noted by Antonio Damasio, MD and Ralph G. Maurer, MD in an article published in 1978 as well as later by other researchers. In a paper written in 1996 by Martha R. Leary and David A. Hill, the authors wrote,” Our focus was on the potential value in viewing behaviors seen in autism from a movement disturbance perspective.” I have seen other research articles published more recently that also look at movement disturbances in Autism and possible approaches that need further investigation.

Granted not every person with ASD has the same level of involvement in terms of movement disturbances. However, here we are in 2019 and very little emphasis on movement issues are mentioned in relation to Autism Spectrum Disorder. The DSM V 5 Diagnostic Criteria for Autism Spectrum Disorder, mentions “Stereotyped or repetitive motor movements” under the Restricted, repetitive patterns of behavior, interests, or activities category of the diagnostic criteria. This does not touch the surface of what the impact of movement disturbances may be on some people with ASD.

In the mid 1980’s when my son was diagnosed with Autism, if a young child was not imitating, it was thought it was due to low cognitive functioning. Issues of movement disturbances impact on imitation were frequently not given consideration . During the course of his early intervention services I pointed out that I thought that my son’s difficulty with imitating was because he could not perform the movements . This possibility was taken into consideration in the treatment approach . As he grew it became clearer and clearer that he had significant motor planning issues (may be referred to by terms such as apraxia, dyspraxia).

When my son was 12, several years after he stopped using FC, a teacher who had known him since he was 2 ½ noticed he had begun to watch her lips a lot and decided to try to see if my son could make the sounds of the alphabet. Over time he was able to make these sounds and went on to say words and develop more speech. We were thrilled. As his speech developed, he received a diagnosis of developmental apraxia of speech and services from a speech and language pathologist with expertise in this area. The work she did to address his apraxia of speech involved using a pacing board and a metronome to help him develop a rhythm that would help him to slow his speech and thus be more intelligible. Interestingly the aspect of rhythm is mentioned in the Syracuse University Best Practice in Communication Support document, “Coaching to ensure that the FC user slows their movement to develop a controlled rhythm to typing”. Indeed other publications regarding individuals with Autism mention issues with rhythm.

After my son began to speak, we learned that he could read. He had decoding skills even though he had not been formally taught to read. He had skills that we did not know about. Facilitated Communication has allowed some individuals with Autism to demonstrate that they know a lot more than was thought. In fact I know of a woman in her thirties who developed speech after she began using facilitated communication.

Although my son does not presently use facilitated communication, he has been able to type on his own, when opportunities present themselves to do so. The information I learned related to movement disturbance did and continues to inform my understanding of how he ticks. He can get stuck in thoughts of things he finds upsetting and needs help to shift from those thoughts. Knowledge of this has been so helpful. He also continues to impulsively point before really taking time to process what he is being asked, or point to the same spot on the visual support. Helping him to plan his response and ways to deal with the impulsive pointing are getting him to focus before he points and also moving the possible answers around (in this case pictures with text) to make sure he is not just pointing to the same spot. The movement issues I came to better understand led to these accommodations. I am forever thankful.

Unfortunately there is no widespread understanding of the impact of movement disturbances in individuals with Autism including such things as their communication, social engagement skills, and initiation of movement. This lack of understanding prevents it being informative to therapies and supports provided. I am happy to see that Syracuse University is continuing to support the use and research of Facilitated Communication and hope that continued research will be done in the area of movement disorders related to some individuals with Autism.

 

A day in the life…Part 2

If you missed Part 1, you can check it out here: https://wordpress.com/read/blogs/63769527/posts/561#comment-142

In August of 2008, I received a phone call, from the Developmental Pedi’s office, 6 months earlier than the initial wait list time I was given, with a cancellation appointment! I jumped at the opportunity to get Jayden in to be evaluated. Upon arrival, the Developmental Pediatrician, a Psychologist, Nutritionist, Speech & Occupational Therapist, began their testing and looked to Jayden’s father & I, for parent reports on his development. They scheduled an appointment for 2 weeks later, to go over the evaluations. At this point Jayden was now 2 years and 4 months old. We received the news that based off of the teams evaluations, Jayden had been diagnosed with Mild to Moderate Autism, Global Developmental Delays along with a Feeding Disorder.

The Developmental Pediatrician then ordered that Jayden have an MRI of his brain to determine whether or not he had any brain abnormalities or any signs of damaged scar tissue that would indicate a lack of oxygen to the brain from when Jayden was born, as the umbilical cord had been wrapped around his neck. She also suggested that Jayden have some blood work done for genetics, to see if Jayden’s autism diagnosis could be genetic. All results came back normal.

Now that Jayden had been officially diagnosed, I was able to get him on waiting lists for outpatient Speech, Occupational, Physical and Feeding Therapy. Once Jayden would turn 3 years old, his services with Early Intervention and ABA would end and he would have to transition in our Public Schools Special Education Department and begin receiving services through the school department. I hoped that Jayden would come up on the waiting lists for outpatient therapies by that time so he could receive outpatient services in addition to his school services.

Shortly after Jayden’s 3rd birthday, he was evaluated by the school department and qualified for an IEP (Individualized Education Plan) and had transitioned into the school department. He was granted a placement in a substantially separate, full time, Pre-K classroom, for children with special needs. Jayden began receiving Speech, Occupational Therapy and Adaptive Physical Education, in addition to academics, social, self help & care in his school setting. Shortly after this time, Jayden was picked up for outpatient services in addition to his school services.

Jayden was not initially granted Physical Therapy in his school setting, because they determined that he could safely navigate his school. He was also denied ABA services because the school department did not offer this service. Once Jayden turned 3 years old, his state insurance was not responsible for covering the cost of ABA therapy. If we chose to continue ABA therapy at home, we would have to pay out of pocket, which would have been upwards to $50.00 an hour.  I reconvened the team to request Physical Therapy be added to his school services, due to his toe walking and tight heel cords. Jayden’s Orthopedist suggested that Jayden receive this service as well, to work on stretching and increasing his range of motion and dorsiflexion, which hopefully would help Jayden to avoid complications in the future. I also, again, requested ABA therapy. Physical Therapy was added to Jayden’s service grid but ABA was not.

For the next 3 years, Jayden remained in this same Pre-K setting, including an extended year where he would attend school for 5 weeks in the summer. Although the classroom staff was nothing less than amazing, I had to fight tooth and nail for what Jayden needed, service and staff wise. We decided to retain Jayden for an additional year in his Pre-K setting, instead of moving him on to Kindergarten. He had made many gains in what was supposed to be his last year in Pre-K and the Kindergarten placement that had been proposed for Jayden to move on to, was not able to appropriately accommodate Jayden’s needs. With the progress that he had made, we did not see the point in moving him on to Kindergarten, where not only could his needs not be met but, with fear that Jayden would regress in the skills he had learned. The School Department agreed to retain Jayden in his Pre-K Program based off of our concerns and observations of the proposed Kindergarten placement.

During this time, we maintained his hectic therapy schedule outside of school, which at this point consisted of, Speech, Occupational, Physical, Aquatic, Feeding, Music, ABA & Hippo Therapies as well as working to maintain a household and cover the additional costs and co-payments for therapy that wasn’t being covered by insurance.

An outside ABA agency had come in to the school department to provide trainings to staff and Jayden was one of the first children who received the “ABA Methodologies” in his class. Although they were brief consultations, it was a start. They were able to arrange for Jayden to have ABA discrete trials run throughout the day in his class as well as parent consultations, where I would go into school bi-weekly to carry over and help Jayden generalize these skills at home. Eventually, we were running programs at home in conjunction with school programs and collecting necessary data, which would be reviewed bi-weekly at school, to help show that Jayden did in fact, benefit from this type of therapy.  I reconvened the team multiple times throughout the years to have his IEP amended to request service times be increased and additional services be added to his service grid, additional staff be added to his classroom, an assistive technology evaluation to be done (to determine whether Jayden could be successful using a device to communicate), requests for independent evaluations and to update goals and objectives.

During Jayden’s 2nd year in Pre-K, the ARICA bill was passed which would require health insurers in the state to cover the diagnosis and treatment of autism spectrum disorders for individuals. Unfortunately, the state insurance was exempt from this bill. However, there was an opportunity for families to “buy into” a private insurance, with the opportunity to be reimbursed for the monthly health insurance premium. This was an opportunity for Jayden to receive ABA therapy at home, covered by his private insurance, with the exception of the cost for co-payments, as the state insurance was not required to pick up co-pays for this service. This helped us secure the home based ABA therapy for Jayden again only having to cover the co-payments versus the hourly rate for the therapy, which wasn’t affordable. If Jayden had received 10 hours a week of ABA without being covered by insurance, this would have run us roughly $500.00 a week, which clearly is insane! I jumped on the opportunity to enroll Jayden in the private insurance. Even if we didn’t qualify for reimbursement of Jayden’s monthly insurance premiums, the cost of the insurance would still be less monthly, then having to pay for ABA out of pocket. Luckily, we qualified and Jayden began receiving ABA at home again. We were excited for Jayden, as he had done well in the past with this type of therapy.

At this same time, between the ages of 2 ½ -4, Jayden was no longer sleeping through the night. He had not had any issues with sleep disturbances or sleeping through the night, unless he was not feeling well, since 5 weeks old.  It was absolutely terrible…for all of us! Jayden would go to bed and wake up each night as if he had just laid down for a nap and not going to bed for the night. He would cry for hours on end, kick his legs and was just completely inconsolable, no matter what we tried. We ended up having to break the lease from the apartment we had lived in because the woman, who lived downstairs, would continuously call the police for disturbing the peace. Each time the officers arrived, they felt awful about having to respond to the call and recognized that there was nothing we could do about it. They suggested we keep records of all the complaints that were made on Jayden, to help us break our lease and move from the apartment. We began taking Jayden for rides at 2-3AM to help him fall back to sleep and to avoid having the police come to the door!  It was completely exhausting, to say the very least.

Jayden was eating 3 foods at this point; crackers, applesauce and oatmeal. We were worried about how picky and limited his diet had become. He began vomiting and gagging at the sight of food and swiping entire plates of food off of the table. It got to the point where in order for Jayden to eat, he had to be fed before us or he would not eat his food. We went to see a nutritionist who agreed that Jayden wasn’t getting the nutrients he needed but, he was maintaining a healthy weight for his age. She had suggested that Jayden begin to have 3 cans of Pediasure each day. During this same time, Jayden would not move his bowels for 4-5 days at a time. I was certain that constipation was playing a major role in his sleep disturbances as well as the excessive crying and kicking of his legs at night.

From here, we made our way to see a Gastroenterologist. Jayden first had blood drawn to test for food allergies. A KUB (X-ray of the kidney’s, ureter and bladder) had been done. The results from the KUB showed that Jayden was significantly impacted, so much so that you could barely see any clear spots of his stomach. G.I. suggested a “flush out” protocol, to rid Jayden of all the stool that had backed up. Once this flush out had been completed, it was suggested that Jayden be sedated so they could perform an Upper GI Endoscopy. Once Jayden was scoped, they clipped lining of his stomach for additional allergy testing. Everything was clear and the endoscopy did not show any internal issues. All allergy testing came back normal. I was grateful and relieved that Jayden didn’t have anything internally wrong but I was also discouraged that they didn’t have an answer as to why Jayden was no longer eating a wide variety of foods and what had been contributing to his extreme constipation.

Jayden had also suffered from chronic ear infections. It seemed he had an ear infection every month! Jayden was referred to an Ear, Nose & Throat Specialist.  A Caloric Stimulation test was done to determine whether or not there was damage to Jayden’s acoustic nerve (the nerve that is involved in hearing and balance and also checks for damage to the brainstem). A Tympanometry test had also been done (to determine any problems within the middle ear). Both tests came back normal and showed no damage in his ears. The ENT suggested Jayden go on a low dose of antibiotics as a preventative. A conversation was had about the possibility of Jayden in the future, needing surgery to have tubes put in his ears. With the history of ear infections, if this had continued, this would be an option. I was not thrilled at the fact of Jayden needing to be on antibiotics daily. I questioned what would happen if he really needed antibiotics and his body had built immunity to them but, I was desperate for Jayden to get some relief and hoped this would help and prevent surgery in the future. The ENT ensured me that this was safe and a good preventative option.

To be continued…

Grieving; What to do When They Don’t Understand

 

In the past 2 years, my girl has lost 2 close family members.  After a lengthy illness, my mother, who had lived with us for 2 years, passed away.  The time leading up to her death was particularly hard, and I had no idea how to talk to Heather about this, since she doesn’t have a cognitive awareness of death or illness, other than when you’re sick, you visit the Dr. My mother chose Hospice, in our home, and let’s just say it was anything but peaceful.  A few days in, Heather began demanding:: “Kristen, hospital, now”. She knew that my mom was sick, and to her, it appeared that we were not taking the appropriate steps to care for her properly. Despite my desire for Heather and my mom to spend time together before there would be no more time, I sent Heather away for her waking hours.  She went on outings and visited friends and family.  She came home to say goodnight and left first thing in the morning.  I couldn’t bear the thought that she might think we were allowing my mom to suffer.

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One of their last “goodnights”.

My mom passed, the family dispersed from my house, and I waited for Heather to ask where she was.  She never did.  I was floored, since perseveration is one of Heather’s strongest traits, and I had been expecting an onslaught of “Where Kristen?”  I showed her pictures, she refused to look. I gave her my mom’s reading glasses because she loves wearing glasses, but she refused to take them. I showed her videos, she got mad at me.  She never said anything else. Fast forward 3 months, she woke up one morning and randomly I hear, “where Kristen?”.  It had taken her months to ask the question, perhaps months to even be able to talk about it.  “Kristen was sick. She died. Dead. She’s in heaven now.” Her response?  “Ok”.  A few months later, we were watching TV, and there was a Dr. on the show. We ended up having a WHOLE conversation about my mom and the hospital, and Dr’s, and we sang the songs my mom used to sing to her and we looked at pictures and videos. It finally felt like she understood, and was ok.

This past month, we had to put down our family dog. The dog who’d been in our family for 10 years, and was very much a part of our household. There were tears from all our family members, and we tried to tell Heather, now that she might have some understanding of death, that the dog wasn’t coming back because he was sick.  She wouldn’t pet him, and wouldn’t say goodbye. I assumed that Heather would respond similarly to when my mom died, and that in a few months, we’d have a chat about the dog.  But, heartbroken from the vet, I walked into the house, and she immediately asked, “Where Chico?”. WHAT? Now? Now she wants to talk about him? We told her the same thing- Chico is dead, he was too sick, and he won’t be back. She loves to look at pictures of him, and even 4 weeks later, she asks about him daily.

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Heather and Chico

The point is, no matter how we prepare, or don’t prepare, we don’t know how someone will respond to death. We don’t know how they will grieve, or not grieve.  All we can do is what we do every day: try as best we can to help them understand and deal with the circumstances.  Support them in whatever ways they choose to grieve, and offer coping skills and ideas that may help.  We can’t guess how someone will feel, what they’ll need, or determine how they should grieve. On top of that, since each circumstance is different, we can’t even determine how they will grieve each time they need to. We can only support after the fact.

Below you’ll find some resources that may help you when you need them.

http://blog.stageslearning.com/blog/autism-helping-understanding-death

https://www.iidc.indiana.edu/pages/supporting-individuals-on-the-autism-spectrum-coping-with-grief-and-loss

https://www.psychologytoday.com/us/blog/aspergers-diary/201412/navigating-grief-and-loss-autistic-adult

https://www.crossroadshospice.com/hospice-palliative-care-blog/2017/october/25/supporting-a-child-with-autism-in-their-grief/

Losing a Pet in an Autistic Household

From Radio to “A Presence on your Journey” Podcast”

Written by Dennis Polselli, Publicity Coordinator for Community Autism Resources

One of the things I have always been interested in is radio.  I am interested in News and politics. A lot of my information, before accessible technology came along and enabled me to read newspapers and magazines like everyone else, came from radio.  I especially loved local talk shows.  One show I listened to while growing up was on radio station WALE 140 in Fall River.  The show was called Party Line and in those days, there were no two way phones on these shows, therefore the moderator had to repeat everything the caller said on the other end of the phone.  I used to get my sisters’ toy phone and play that I was the moderator taking phone-calls and repeating what each caller said in the area of national and local politics.

When I grew up, I got involved in radio as a student at Stonehill College, I hosted shows dealing with Student and campus issues and politics and yes, I took phone-calls from listeners.  The excitement came when the student radio station decided to do Election night coverage in 1977, a presidential year.  To prepare, we did interviews with the Political Science department and state and local candidates running that year.  Some of them gave their victory statements and concession statements on our airwaves.  The coverage went all night and went well.  In 1984, my first year working at Framingham State University, we did similar election night coverage with my anchoring the coverage and students working as engineers, producers etc.  Later on in my employment at Framingham State University, when I became Disability Services Coordinator, I started and ran for 15 years a Radio Reading Service program for the Blind and individuals with print disabilities.  The Radio reading Service is headquartered in Marshfield, Massachusetts and my affiliate was The MetroWest Radio Reading Service.  There were forty volunteers that read area newspapers, magazines and books over the radio, recorded from their homes and aired on a tape deck I had in my office.  Among the volunteers was Donna Polselli who read the Supermarket Fliers and gave health tips throughout the program.  Because we were housed at a College, we broadcast on tape delay, arts and Humanities lectures and Graduation Exercises.

When I retired in 2009, that was the part of my job I missed the most.  Then Barbara Domingue asked if I would do podcasts for CAR.  Think of podcasts as sort of internet radio, which happens to be springing up all over the place.  Perkins School for the Blind operates an internet radio station, “Radio Perkins.”  For our podcast we came up with the title, “A Presence on your Journey” the second half of our motto:  “A place to Start:  A presence on your Journey.”  We’ve covered many topics from a family learning about Autism during a sleep over, to a podcast at Wigglekids in Swansea.  I really enjoy these podcasts, I learn so much and I’m hoping the readers of this Blog are learning as much as I am.   You can listen to past podcasts by going to:   http://www.community-autism-resources.com and if you have iTunes, go to iTunes, and search for or under bookstore, under Autism “A presence on your Journey.”

As I say at the end of each podcast, “A Presence on your Journey” is produced and edited by Nicholas Domingue and my name is Dennis Polselli.

Dealing with Ought-ism

The work that I do is rewarding, challenging, and much like Autism itself, ever changing.  I spend most of my days researching information so that I can stay up to date on the latest Autism research as well as what services are currently being offered for the ASD population.  I try to stay up to date with what’s going on in the State House regarding the budget and Autism.  I do this so that I can be best prepared to tell parents and individuals what they ought to do when they call requesting information.  I do my best to make sure that I have provided people with the best information possible so that they can do what is best for their family and their situation.  After all, people are trusting me with their families wants and needs.  The least that I can do is fully listen to them and offer any advice I can give…. Right?

You’d think, or at least I’d think, that this would be the way it works in all aspects of life.  If I have a question, there’s someone that I can call to get advice from.  That person can be a family member, a friend, or an agency that has expertise in the area in question.  The easier the issue the more resources I would have when looking for an answer.  It wasn’t until very recently, that I realized how willing everyone is to tell me what I ought to do.

This past year has been a whirlwind to say the least.  My husband and I bought our first house.  Shortly thereafter we found out that we were expecting our first baby girl.  We lost my mother who couldn’t win her 19-year battle with cancer.  And on March 18, my sweet baby girl came into the world.  With so many highs and lows I have never felt more out of control.

There have been a number of times that I found myself seeking out professional advice.  With my house it was:  Is the wall we want to knock down a weight bearing wall?  Why isn’t the radiator in the bedroom working?  During my pregnancy, every decision I made now wasn’t just a decision for me and my health, but the life I was growing.  So that brought on a whole new topic of questions:  Is it safe to eat _____?  Can I still ride my horse?  When my mom’s health was worsening, I was asking questions about her:  Is this the end?  Is she comfortable?  Can she hear me?

And then, when our baby was born there was a plethora of new questions I had.  The difference with this situation is that I didn’t/don’t have to reach out to a professional.  It seems like everyone has so much advice, even on questions I didn’t even know I had! I have never heard the phrase “you ought to” more so than in the past four months.  I know that the people giving me this unsolicited advice don’t mean any harm by it, but all of these “ought-isms” definitely leave me questioning everything.  You could ask 5 people the same question and get 5 very different answers.  I’ve been told that I ought to leave her sleeping in our room until she’s 6 months.  Then I’ve been told that I ought to get her used to sleeping in her own crib in her own room as soon as possible.  I’ve been told that I ought to start her on fruits and vegetables at 4 months, but I’ve also been told that I ought to wait until she’s 6-9 months.  I’ve been told that I ought to put on sunscreen when we go outside, but I’ve been told I ought to wait until she’s at least 6 months to use it.  I could go on and on with the different things I’ve been told that I ought to try or do.  I was even told by a nurse in the hospital that I “ought to shorten the spelling of her name.  It has too many letters.”  (My babies name is Ellianna.  The nurse that said this was Rosemary.  THEY BOTH HAVE 8 LETTERS!!!).

For The most part, I appreciate the advice that I’ve been given.  It’s usually from moms that have lived and breathed motherhood already and the advice they are giving truly comes from a good place.  But this has definitely taught me a new skill that I didn’t even know I needed in every aspect of life be it parenting, my professional work, or even just being a friend.  I need to listen more and wait for the person to ask for advice.  Sometimes when someone calls to talk, they just want that person on the other end of the line to listen and to reassure them that they are doing a fine job.  They don’t want or need any ought-isms.  I need to remember that.  Going forward, in conversations I’m going to do my best in giving the assurance that people need and the advice that they want, when they want it.

Self-Awareness and Self-Determination at the Gottschall Access Program

What are Life Skills? For many, the idea of a Life Skills curriculum conjures up thoughts about functional life skills including cooking, laundry, hygiene and cleaning. For some it might mean vocational skills such as following directions, computer skills or alphabetizing.  Others may think of lessons about accessing the community: safety signs, social skills and transportation.  While many of these skills are important and necessary for young adults transitioning to adulthood life and responsibilities, I think we sometimes overlook an important process on this journey.  What do you WANT to do?

Moving on to adult life can be a daunting experience for all of us who have made that transition. I think many of us have reached that point in our life when we wonder if we work to live or live to work. I know in my case it is certainly both! Fortunately, my work is rewarding, dynamic and plays to my skill set.  My first job at Papa Gino’s however, (while I did love the employee discount) was a job of necessity.  It is vital to offer everyone the opportunity to find employment that fits well with their skills, interests and motivations while matching their need for support and fulfillment.

Through the Gottschall Access Program, our first year of Life Skills Curriculum aims to provide the base for this opportunity.  Our first two semesters concentrate on the principles of Self-Awareness and Self-Determination.  We feel that these 2 tenets are crucial to the process of figuring out “what do I want to be when I grow up?”

“Creating Happiness is done in many steps.  Only with self-awareness can we see where our steps are taking us.” – Pathway to Happiness

Self-Awareness is defined as “The ability to accurately recognize one’s own emotions, thoughts, and values and how they influence behavior. The ability to accurately assess one’s strengths and limitations, with a well-grounded sense of confidence, optimism, and a ‘growth mindset.’” – Collaborative for Academic, Social, and Emotional Learning

Through our self-awareness curriculum we support students’ exploration of their strengths, interests, skills and talents.  So many students come to us well aware of their challenges and the things they cannot do well, but they often have a difficult time identifying the things that they are good at.  Through assessments, guided activities and self-exploration we encourage the students to realize their skills and interests.  It is also necessary through this process to discover our challenges and areas in which we require support or accommodations. This can be an empowering process for students to realize that while they do have limitations, as we all do, it’s ok! It’s vital to know ourselves before we can move onto knowing what we can provide others in work, school or community environments.  Once students have identified what they are good at and what areas they need improvement in, we can move onto self-determination.

“When you know yourself, you are empowered. When you accept yourself, you are invincible.” – Tina Lifford

Self-Determination is defined as the process by which a person controls their own life.  Once the students are comfortable with their self-awareness and have a good handle on not only what they are able to do, but what they would like to do, we can move on to how make that happen.  Through our self-determination curriculum we explore and practice how to be effective communicators, how to identify and request needed accommodations and how to set achievable goals.  A very important component of self-determination is motivation. For some students entering adult life, their decisions and advocacy has been done for them by their support system.  Students need to be self-motivated to want to achieve their goals. Without this, goals become the property of someone else rather than the student’s own. Motivation will provide perseverance when things don’t go as expected and a desire for self-advocacy to make changes when needed. It is important for us to teach students how to formulate goals, make plans and advocate for themselves or request support when needed.

It is our hope, at The Gottschall Access Program, that our students will emerge with a confident idea of who they are and a plan to live their best lives.