Autism Radio

My son’s interview will be aired tonight on Autism Radio,http://autismradio2.squarespace.com/hope-saves-the-day/2016/8/15/show325-interview-with-peter-fifoot-young-man-with-autismhttp://autismradio2.squarespace.com/hope-saves-the-day/2016/8/15/show325-interview-with-peter-fifoot-young-man-with-autism

The Impact of Common Core On ABA Therapy

 

 

One of my son’s current ABA therapists is a 19 year old male college student. These are  very desirable desirable attributes in a therapist for a male sixteen year old HFA kid. Let us just call the therapist, John. John is cool. He knows sports, even plays baseball in college. He is a musician, plays the guitar and sings. And his best talent is, his socialization and his ability to “show” and “tell” my son he too can be positively social!

Many of their sessions are in the community. They go out to lunch. They have gone on a missionary trip together where they helped a family by repairing parts of their house with other members of their crew. Together they performed in the talent show. John has taught him many of the intricacies during social times.

I decided to give my son the opportunity to complete a errand which benefitted him and me. An evaluation needed to be mailed to my son’s teacher for completion. I decided to write out directions for both my son and the therapist. Since my son has mastered the ability to give directions for locations he is familiar with, I was able to just list places to go and my son would need to direct his therapist. Here is what I wrote:
Dollar Store

• 2 envelopes

Post Office

• weigh two envelopes and test 
• Write

I wrote the teacher’s name and address in

Return address

I wrote my name and address

Then the opposite 

Same postage for both envelopes

I then printed two copies. I explained to John the steps. First have my son direct you to the Dollar Store. Have my son buy a minimum of two large manilla envelopes. I had an example of a padded manilla envelope. I explained that padding was not necessary. I then explained that my son would then need to direct him to our local post office. I then gave John the test. I then explained that my son was to put the test in the envelope and write my name as the mailing address and return address for the teacher to mail back the test. John looked perplexed, so I typed out the teacher’s name in large font and mine twice in small (as return addresses) and a large font type of my address for the return of the test. I then printed it out. I gave him a scissor and said that my son would cut the addresses and label the two envelopes. John then said, “Where do we get tape?” I told him that the tellers would give it to them. I then told him to weigh everything, as written in the directions, and place the postage on the outside envelope and the return address envelope that was also being sent. He looked confused but I believed my son would be able to complete this task with his therapist’s support.

I made two copies of the directions, one for John and my son. I gave John the sample envelope, two directions, scissors, and addresses on a sheet of paper. The last comment John said was, “this is going to be an adventure.”

About forty-five minutes had passed and I received a text, asking me “You want us to weigh the envelopes and send them too right?

I responded, “Weigh everything together and mail everything.”

He then said, “Okay and jut to make sure, I put the envelope inside the other envelope. And I fold the envelope with the test inside it? Wouldn’t that screw up the test?”

At that point, I was nervous so I “Facetimed” them. There they were. My son was laughing. I asked John if he gave my son the directions and John said no. I then asked to see the envelope. He had written the addresses across the top! I then told him that the mailing address need to be in the center, and then I asked, where are the typed addresses? John said,”Look, this is a nice pen.” He was showing me the pen. He said,”I will cross it out and write it again.” In between this my son was “bombing” the facetime. John asked me at one point, “Why can’t we just put the teacher’s address in the GPS and just drop it off? It is easier.” I agreed it was easier, however this is a life skill I want my son to know how to do.

I then sent my husband down. He came back and said that when he had arrived, they were walking out and going to Wendy’s.

When they finally returned, I asked John if my son was successful in directing him to the two locations and John said yes. I then asked if John had given my son the directions and John said, “No.” NO! I thought. I then asked why not and John said he was “testing” my son on following directions orally. I found out it was because he left the two copies in the car.

After my speaking to my son, I found out that they had never put the return postage on the return envelope. This created another several steps. I took this as a learning experience. I reprinted the address and had my son tape them. My son knew where each belonged and shared how John did not. We then went to the post office added postage to the return envelope and sent it in another envelope.

The issues are that John, who is 19 years old, did not know where to place address and he had no idea what postage was.  This is because Common Core does not have this in its standards. Our children do not know how to do the simplest tasks. This is very sad for our children with Autism because neuro-typicals are missing sills necessary for basic living and will be providing services for our kids.

 

 

Autism and Driving a Car!

Okay, my daughter was afraid that I was going to run out of material to write about in my blog, really, did not she live in our house with us?

My son is quite the high functioning autistic individual. He was able to pass the written test to acquire his driving permit! He then took his required six hours to obtain his permit. Then we paid for four more, in June.

I knew that I was going to be taking my autistic teenager to practice driving, but not yet. So we went on vacation for one week, returned with my mom and two weeks later had a family gathering.

Okay, that sounds simple… almost boring. In a normal house it would be but not in mine. So picture this, my mother who suffers from arthritis, has two knee replacements, a shoulder replacement and is in need of her cataracts removed from both eyes, my autistic son, my ADHD autistic husband, my mother’s 84 year old brother (my uncle), his wife, my cousin, her husband, their one year old daughter, my other cousin, his wife, and their female dog, and my daughter who lives in NYC, with my two male dogs. The day was filled with enjoying the baby girl and catching up. My daughter decides that my autistic son should go and practice driving with her. My daughter has not driven in two years, she lives in NYC and rides the train. I of course say, “alright.” What was I thinking, oh yeah, I wasn’t.

I told her to drive down to the grammar school and have him practice. She of course is an all knowing twenty-six year old, says of course. She left and the rest of the family continued visiting. I was fulling engaged in the family and the landline. The phone noted it was my husband’s name but not his cell. I picked it up and my daughter was on the other end. She said, “Tell dad to come down the street to the Mooney’s house.” She did not yell or sound frantic. I told my husband to go down the street, two doors down. He and my cousin’s husband went down the street. The phone then rang again and my daughter said, “You hung up on me, Peter hit the Mooney’s bush.” I told her her father was coming down. I did not get nervous, I think I am numb. Nothing really shocks me any more. Well, until the “adults” got involved. My son and daughter came back and he was scared that my husband and I would be mad. Well we weren’t. When my husband came home my “fun” began. My husband was telling me he did not know what to do because my cousin’s husband told him that my husband should tell the insurance company that he ran into the bush so that our son would not have a repercussion. I was tired of the “guy” talk, the brainwashing of my husband. I knew my oldest son and I are usually on the same page, so I told my husband to call him. Thank God, he called my son, who was in Vegas, my son answered and told my husband that nothing will happen to my son. By now all the adult men are talking about the car and whatever.

My cousin asked if I could get a bucket of water for the baby to play outside, this was a 90 degree day. All of a sudden, Mr. Mooney, the rather rotund neighbor came down. My husband greeted him and APOLOGIZED for my son to running into the bush, not shrubs. The neighbor told my husband that he was concerned about my son and wanted to make sure he was okay. My husband reassured him that my daughter and my son were fine. But once again, my husband apologized for the bush, he said, “Let me know if you want us to get a new bush.” I was fuming! The neighbor said, “Oh I planted that 40 years ago and my son always wanted me to cut it back and I have just let it grow.” That was a big fat lie! I have lived in my house my whole life, and I am 51 years old, he did not live in the house 40 years ago! He then told my husband that he was concerned about my husband’s car. He “believed” that the car could have been damaged under the car and my husband might crash into a tree or another car. I couldn’t believe my ears. My cousin’s husband said, “Oh the neighbor is being nice.” I then had to pull out another man’s name and number for help. I felt like I was using lifelines in “How to be a Millionaire”. I quickly remembered, my friends husband was the guy. I told my husband, “Hey hun, call Walter, he is an adjuster for an insurance company.

Once again, thank God, for normal people. Walter told my husband  that the car was fine and just tell the truth to the insurance company.

So my husband took the car and had it assessed. $5000.00 damage.

Let me share with you the simple conversation I had with my daughter. I asked her, “Why did you let him drive back from the school? Why didn’t you drive to the elementary school parking lot , let him practice in the lot and then drive home?” Her response was, “Why didn’t you tell me to do that?” My bad, what else is new.

Meltdowns v.s. Tantrums AKA Verbal Hemorrhoids

 

Flair ups.. Both tantrums and outbursts flair up. Most children have tantrums. Autistic individuals experience meltdowns and have tantrums. What is the difference between a meltdown and a tantrum?

A tantrum is an outburst that happens when a child is trying to get something the individual wants or needs.

A meltdown happens when there’s too much sensory information to process or a reaction to having too many things to think about.

Let us break it down:

Auditory sensory issues: Loud amusement parks, loud classrooms, humming sounds (even quiet), dripping faucets, or any other sound that an individual finds distressing. The individual has “super sonic” hearing for particular sounds or all sounds. 

Olfactory sensory issues: hyper-sensitivity to any possible sound. They have “super sonic” smelling power.

Visual sensory issues: many autistic individuals are visual learners, this is a super-power but can be an achilles. Over stimulations such as light, or lack of light, fast moving or slow moving objects.

Tactile issues: This has varying parts. An individual may not like particular textiles, corduroy, velvet, spandex, etc. People may not like the way things feel against their skin or the sound the fabric makes when it rubs against itself or the way it feels when scratched.

Oral motor issues: the inability to move the mouth in one or more particular ways or seek out a particular movement of the mouth. This is were you find droolers, pacifier suckers, inability to drink out of a straw, kiss, or even speak.

 

These sensory sensitivities cause frustrations which cause an individual to have a meltdown. Meltdowns are not tantrums. These “events” are not to draw attention, rather, to try to reorganize a situation. 

  

Another cause of a meltdown is an overwhelming amount of information to deal with. The new term for organizing our daily and monthly activities is called “executive functioning”.  Our world makes executive functioning difficult for the most organized person, so for an autistic individual it is multiplied by a zillion! As it is “neuro-typicals” find changing their schedule difficult, imagine how it must feel for an autistic?!

   

Tantrums are beastly! These are incidences when which are to bring attention to the individual in order to have a chance to to make a situation go their way. This is something children and adults do. Children do it to be first in line, get an extra piece of food, or even stay up late. Adults do this for similar reasons but have the “language” to justify their behavior.

Being on the other end, whether it is a meltdown or tantrum, it feels like a verbal hemorrhoid. It flairs up and sends shivers down my spine. Whether my son is flaring or my husband, it makes my hairs stand up and is irritating. I understand if it is a meltdown, I can’t rationalize with either one of them easily and sometimes it takes time to dig and find out the “real” problem. As for the tantrum, I just want to vanish.

Boy, I wish there was Preparation H for verbal hemorrhoids. I wonder what it would be called?

 

 

 

 

Tools For Measuring Social Functioning in Autistic Teens

We are up for our Triennial review. We prefer getting our son evaluated/assessed privately for many reasons. We have gone to court numerous times with our District which always seemed to point us into the direction to have him evaluated privately.

Now the first IEP meeting that must be conducted is to determine which  evaluations are needed to be conducted. Times have changed as my son’s timeline has. First evaluations needed when he was first diagnosed where, speech, OT, PT, psych-ed., social history, neuro-developmental, and behavioral. Fast forward to now. We are deciding the only evaluations we need are psych-ed and  ABA, and Assistive Technology. Wow have things changed.

Now this is going to cost big $, one covered by insurance, Thank God, and one not. Each evaluation costs $1,500.00. We consider these evaluations as an investment. We are seeking understanding to his levels to be able to best acquire proper modifications which will be used to enable the College Board to know what modifications are needed for my son to take the SAT and ACT to his best ability. This then will give colleges data for acceptance. All of this is for my son to attend school, learn his career, and live a very independent life while being a successful, positive contributor to our society.

With all the testing that all children go by, and even more for our “special” children, I find a better assessment.

After so many years of ABA and socialization, the assessment results are in. My son is in Kentucky for the third year to accomplish volunteer missionary work. Yes, his ABA therapist is going, but we are fortunate that his therapist is a nineteen year old college male college student. He will be attending running camp in the Massachusetts’ area, by himself, for the second year! He has gone on many church over night trips, with various church groups!

The proof is in the pudding. Without an assessment, I can tell my son is succeeding, scoring A+ all the time.

This is the assessment’s data of all that has been done with and for him can be seen in his living!!

Then and Now

             

When my oldest son was in high school we wanted to provide him a “typical” high school experience. My son was the quarterback for his high school. They were a cohesive team. No one was a “star”. So to support the team, I converted a Halloween costume pattern to create a falcon costume to wear during games, the District’s mascot. The top pictures show my youngest sporting his falcon costume. We attended many games. An article in our local paper sporting my youngest son’s picture with his falcon beaked hat was written about the team. The caption under my youngest son’s picture noted that he was looking out at his big brother the quarterback. No one knew that he was autistic and was not watching his brother, he barely recognized his brother.

The oldest son’s football coach clipped the article and placed it in the locker room. The coach then brought the team into the locker room and told them that the team needed to play full heartedly as my oldest son’s brother may never get a chance to play any sport let alone attend the high school with his diagnosis of autism. This was a changing moment for my oldest son.

Fast forward…

My youngest not only attends the same high school, but also attended the elementary schools and middle school my two older children attended. He also was successful enough to attend general educations, always, he never needed special education classes. As for high school, he uses the very same locker room as his brother and runs on the track that surrounds the football field his brother played on. He also has also fulfilled all requirements in order to obtain his driver’s permit, that is him in the car driving with his driving instructor.

College bound…

I am a proud mom!

The Invisible Disability… Autism

I had been “warned” about conduct by airport employees with Autistic, disabled, individuals. Dena Gassner, LMSW, presented at the  A.S.P.E.N National Conference, shared a story of how she, as an HFA individual experienced a horrible situation in an airport, despite the fact she told numerous people she was disabled and needed accommodations in order to be able to avoid a melt down. By the time she was on the plane she was in tears. She is a successful professional, mother, and grandparent, and just needed accommodations and could not get them. I never thought this story would be one I would need to go through and yet we just did.

My husband called the airlines to prepare for our trip. He let United Airlines know we were traveling to Puerto Rico, two disable individuals with one non-disabled (me), and two emotional support dogs. He was given all the information we would need for the airport in New Jersey for our departure. He then received an email and phone call from United Airlines with contact names and numbers for the Passenger Support Specialist. This was particularly helpful as on our return flight from Puerto Rico to New Jersey we would be traveling THREE disabled and one non-disabled. Do you get the picture, me with my husband and son with autism and my mother in a wheelchair. (Poor me) When we left on a trip to Puerto Rico from New Jersey, things were very smooth. We were given information on traveling through the airport with assistance for two, yes two disabled people, my husband and son with our two emotional support dogs. We were met by a airport employee at the security check who said he did not know how to handle assisting disabled individuals because he had been on the job only three days, but was going to help us and he did! He was calm and took and walked us through every step personally. We believed that since we were in communication with “people” we would experience an even better experience than in New Jersey when we return from Puerto Rico. This was not the reality. When we arrived my mom was given a wheelchair after “begging”. Our Passenger Support Specialist was never to be found. We were told by the employee gave my mother the wheelchair said we need to go in the line which wrapped around the building for the USDA. My husband shared that we were a party of four, three of which disabled and we were awaiting our Passenger Support Specialist. Finally the Passenger Support Specialist arrived and told us he could not assist us until we went on the long line and go through the USDA to check our bags, but my mother could stay in the airport area while I took her suitcase. Just to give you a visual, I carried our Yorkshire Terrier, support dog in a bag, my hobo large pocket book, my large carry-on with my laptop and several books, pulling my suitcase with one hand and my mother’s in the other. My husband had his carry-on with his calendar, books and laptop, our dachshund in a pet bag and pulled his bag and my son had his backpack which had his iPad, laptop, dot-to-dots, and pencils, as well as his bicycle belt which had his iPod, phone, battery booster, wires and plugs. As we waited, I saw a young man and his mother, I guess, physically impaired. He may have had, CP and dwarfism, however, he was walking on his own. He passed us on the line and entered. I thought that he may have checked in already in the USDA and was going to go to the airline to check-in. To my surprise they appeared, they appeared and TRIED, to cut between my son and I. Hell hath no fury like a mother of a special needs child, wife of a special needs husband, and a daughter of a disabled mother! I put down the two large suitcases and said, “Excuse me, you can’t get in front of my son!”

The woman then said in Spanish, “Can’t you see he is disabled?!”

I then said in Spanish to both of them, “You can’t see it but my son and my husband are disabled, too! Just because his is a disability which can be seen doesn’t mean my husband and son’s disability is more or less disabling! They have Autism!”

The young man then said in English, “I am sorry, I didn’t know.”

I then said in English, “I know you didn’t know, you can not see their disability and I have asked for assistance numerous times and everyone says that they can not help.”

As we moved around the corner, there he was with his female companion and an airport worker. The worker then said, “Excuse me,” to the person behind my husband and put the young man and female companion in line.

I lost it. I said the the worker, in Spanish, “Excuse me, I asked you and several others for assistance with my disabled son and husband and you and everyone else said they couldn’t help, just get in line like everyone else.”

The worker then said, “Do you need a wheelchair.”

“NO! I need assistance!”

He then said, “Oh I did not know. Do you need a wheelchair?’

“No! My mother is in a wheelchair waiting for me! I needed help with my son and husband! Not every disability can be seen!”

His response, “Oh, I am sorry.”

Insanity! When we finally reached the belt to go through USDA inspection. There were four workers, one sitting and three just standing. They were talking to each other. The seated worker let me know that all the bags had to go on the belt and my dog need to come out. Oh thank you! I took the yorkie out and I had to lift both of the suitcases, mine and my mother’s on the belt, my carry-on, the dog’s bag, and my pocketbook. I was struggling and not once did the worker get up to help. I then had to help my son with his bags! Then I had to run to the end and grab my items and my son’s and put all the bags on him and I. So frustrating!!!

We then went to my mother and received better treatment with our United Airlines Passenger Support Specialist. The only issue was that I was given a red ticket which meant I didn’t need to take off my shoes, but I landed up having to take of my slip on sandals. I believe they meant to give my son the red ticket because the poor kid had to take off his sneakers! By then my son was losing it! He was “starving”. As he said, “I haven’t eaten in 6 hours!” Totally autistic comment! He had a deer in head lights look when they asked him to go through the metal detector. I then had to go back and tell him it was alright and come through. I asked what was wrong and he just said that he felt bad for carrying on about being hungry but he was. Now they had another issue because they believed that he had a questionable substance on his hand, so they had to wipe them. When we left New Jersey each of us had this done to our hand, now just my son. I don’t get it. Test the HFA kid and man to see how much you can push to get the HFA individual to melt down.

Well, this leads me to my next advocation venture, the United States Airlines Department. I called them, down in Washington D.C. and left a message. I received a call back at 5:15. The gentleman heard my story and said that he believed this was a USDA issue and gave me the number. I called them the following day and spoke to a woman. She too heard my account and said,”Oh this sounds like a Civil Rights issue.” She connected me and stayed on the line until I could leave a message. They called me, but I missed the call. I called back and left a message.

My next entry of the week, hopefully, will have a positive resolution for not just my son and husband but for everyone who has an invisible disability, Autism, ADHD, Diabetes, Seizure, Arthritis, heart conditions, just to name a few!

 

Autism… A Parent’s Disability

Now that my son has moved through his Spectrum Rainbow and can see it at times from the cloud’s perspective, I realize how disabled I have become.

My son was diagnosed and my family and I went right to ABA work. I never permitted a moment of my waking day to go by idly. When my son was awake, I either was working directly with him or I was listening and taking notes from the monitor while he was in Early Intervention sessions. After he was swaddled and put to bed, I would prepare his ABA suitcase for the following sessions, study, and learn more about Autism. I can only say that all of this work has paid off. My son, at age 16 years old, is a great actor portraying a neuro-typical. It basically, comes “naturally”. The price paid was a part of my abilities.

I must admit, my knee jerk reaction to my son’s diagnosis was to get right to work because I did not want to burden society, my older children, or  my husband and I, with a dependent, mute, adult man in the future. I wanted to complete raising my oldest two and then my youngest. I wanted to retire and enjoy my golden years with my husband. The man that asked me to marry him, the one I fell in love with, the one that wanted me.

Now that my son is considered a High Functioning Autistic teenager, I can reflect on my own disability (disabilities), yes mine. I guess my disability would have eventually appeared, but not at the level and intensity as it hit me.

My son’s Autism and now my husband’s diagnosis of Autism, ADHD, and Depression, has made it perfectly clear by everyone that I am the only one that must be the rock and stable adult in our family. Luckily, my other children are successful adults, who are on their own, and independent. The pressure is still a great burden, financially, physically, and emotionally.

I am “on” 100% of the time. With that in mind, at age 40 or so I “crashed”. There were some additional family crises outside of the diagnoses. My uncle died of pancreatic cancer and my husband left his job. I fell into a frightening depression. The worst of my depression was in my mid forties. Luckily, my friend at work and faith in God, got me through this frightening and horrible time, and medication. I think the two crises were just “the last straws” on my back.

I still have my moments, however I must say I am no longer on medication, when I am depressed, but am able to cope. It is very hard when you must continue to teach by example, try to be a “perfect” respectful adult for your HFA teenager who learns by example, consistency, and by repetition. While also dealing with an adult, your spouse, who has social issues as well as behaviors which need to be corrected so that our son does not model them. This is the most challenging. My son models from his father as they share the same gender.

My days are long and my ears and eyes are supersonic. I need to listen to both parties discussing, not having a conversation, discussing nonsensical topics, at times, which for all intensive purposes, is stimming for both of them. I also need to be seeing every movement as my husband wants to be my son’s friend.

 

$ The Autistic Divide $

Autism costs a lot of money. This is a given. The cost was financial and  the price was also the severing of a sibling tie and strained ties with other siblings for my husband.

When my son’s education was being given to the school district, I consulted with professionals and decided their evaluations, program, and placement were not “appropriate”. This meant we had to take the school district to court. Sounds simple right, well it isn’t. We did not sign his IEP which was a benefit for us in many respects, however, this meant we needed to create and fund a program which we could use to “win” in court. This was a gamble, but we did just that.

The eighteen months or so of our pre-school program, which we financed was very expensive. At that time, insurance did not cover ANY therapy for autistic individuals. My husband knew we were not going to fund his program for very long.

My husband is one of four children, and by all accounts, grew up very close with his siblings and spouses. Prior to my husband and I meeting, he spent vacations with his sister and brother-in-law. Was their child’s Godfather and spent weekends in their house. He assisted them with lawn work, went fishing in his brother-in-law’s family’s lake house, and socialized all the time. My husband and his sister are the youngest two. His brother-in-law is an only child whose parents were majority owners of a few car dealerships. My husband knew that his brother-in-law’s mother donated to the local special education school.

With our family being placed in a very unstable financial situation, my oldest graduating from high school, hoping to be able to send him to college, our daughter beginning high school, and our youngest in preschool, we feared having to go bankrupt and being homeless. My husband decided to call his brother-in-law’s father , who owned the car dealerships to request the dealership put a car up for a raffle with proceeds to go to our son’s educational funding.

My husband’s brother-in-laws mother listened to my husband as he opened up and shared all of the intimate details of my son’s therapy and the fight we were taking as well as the threat of loss of funding for his very necessary educational/therapy which we had found great success. My husband thought was that this philanthropic woman would be understanding. Yet the voice on the other side said that she would have to speak to her husband, owner of the car dealership. She then told my husband to call her back. When my husband called back, she said, ” No, I’m sorry but if we do it for you, then we would have to do it for everyone, employees, etc.”

She told my husband that she talked to her husband, the owner, and he said no. My husband did not argue or beg, he just said ok, thank you anyway, and he hung up the phone and told me what she said. The events that followed caused our family severed from my sister-in-law, her husband, and their two children, my son’s cousins who could have been a part of our son on the Autism Spectrum. My husband then received a call from his sister who was irate. She said to him, ” How dare you call my husband’s parents and ask them for money. You never should have called them, how dare you!”

Her husband, the son of the owners, then called another time and was so angered, yes angered, and told my husband that my husband should have come to him and he is so “POed”  and demanded that my husband apologize to them and to him. Don’t forget my husband went to the owner and his brother-in-law was not the owner. My husband’s sister called again screaming at him that calling HER in-laws was wrong. My husband was completely taken by surprise and tried to defend himself by telling her that all he did was ask a owner of a car dealership if he would help with a fundraiser to help with our son, her nephew, to a car owner just like any other car owner. He also told her that he had asked their mother if she thought it was ok to ask these people, the owners, if they could help him, and their mother, our son’s grandmother, said “yes”.

I then received a call from my brother-in-law’s girlfriend, my husband’s brother’s girlfriend. Her call interrupted my daily routine with my Autistic son, but she did not care. She proceeded to scold me and tell me that I need to order my husband to call his brother-in-law and apologize for what he had done. I then returned a quick statement letting her know that my husband decided to call on his own. She then explained to me that she knew that I could make him do anything. I became agitated and retaliated and explained to her that she might be able to make my brother-in-law do what she wanted but I could not do that with my husband. I said this knowing no one as control over no one. We hung up and I called my mother-in-law to share the disturbing phone call. All my mother-in-law told me was that she really did not want to get in the middle and all I could do is explain that I did not either. I then called my husband and told him about the two phone calls. He then called his brother and his brother agreed that what his girlfriend did was wrong, however, he could sympathize with their brother-in-law and sister. This did not go over well with my husband and he “sounded off” at my brother-in-law.

This led to us being uninvited to Thanksgivings, Christmas, and even the holiday party. It has escalated to the point that we do not attend any functions, that my sister-in-law and husband attend. We must “reserve” my mother-in-law first for various holidays, Easter, Mother’s Day, etc. As for Christmas, she makes her rounds. She goes to my sister-in-law’s house, who hosts a “family Christmas” with my brother-in-law, his girlfriend, and even my other sister-in-law is invited (sometimes she declines).

This has really hurt my son, even though he does not want to admit it. It is strange to talk about our nephews as our son does not know them as cousins. He has no ties at all and with a disorder that is “self focused” this does not help.

Not sure if times will change… I am not expecting it to nor am I waiting. Autism does not wait neither does progressing.

Perseveration, Obsession, or Hobby

 

 

 

 

 

 

 

 

 

 

When Autistic children “like” a topic, we neuro-typical call the action, perseveration. This is very confusing for a parent of an “Auttie”. We spend endless hours trying to reach our children and identify desirable tools to reward them. When parents and therapist find a way to reward the “Auttie”, therapists and parents can make meaningful gains in learning  in programs.

I have met so many family members of “Autties” that say their child does not have any areas of desires, they like nothing, no area of interest. This is so very sad on many levels. I cannot believe there is nothing a child (any human) finds interesting. However, I know it is difficult to sometimes have the tenacity to continue to search for something that is a feeling in someone based on an external stimuli you have no idea where it is.

I am fortunate that my son was easy to read. He found interest in Winnie the Pooh. He was perseverating on the Winnie the Pooh videos. Since we shut off the t.v., Winnie the Pooh books were desirable rewards. Since, in essence, Winnie the Pooh and all of the characters were animals, it was natural for him to find interest in animal books. People believed he was perseverating on Winnie and then animals. I am not sure though when a perseveration is no longer a that rather an obsession. I guess when he no longer desired Winnie it was then just an interest but the replacement perseveration was animals, but he did not dislike Winnie and friends. With our son’s thirst for knowledge growing and his ability to read, we began taking him out to zoo’s and buying books on various animals. He then grabbed hold of my older son’s dinosaur books, from the 80’s with the figures and “guys”. This opening my son’s world to prehistoric times. The books provided facts in the back cover and a fiction story with the dino and the “caveman”. This enabled my son to grow in knowledge of factual information and the ability to role play with the creatures and cavemen. Once again, dinosaurs became his perseveration. However, neuro-typicals his age “enjoyed” playing with dinosaurs. I couldn’t allow my son to just focus on dinosaurs as an “Auttie”. I had to continue to broaden his desire and knowledge. As a five year old it is acceptable. My fear, however, was he would be 15 years old talking about dinosaurs.

In order for us to continue to grow in his knowledge and interest base, we gave our son experiences with foundations of his current interest and naturally add new ones. We would go to museums, The New York Museum of Natural History, Smithsonian Museum of Natural History, and The Academy of Natural Sciences gave him the desirable dinosaurs and animals while adding other aspects such as people and evolution. We also purchased many books and visited the library.

Luckily, he had learned to learn in ABA sessions and we realized that the sky was the limit! His perseverations, obsessions, and finally his hobbies are vast and he his deeply knowledgeable in all. He moved from animals to evolution of animals, plants, and humans. He then moved on to history, which is a natural progression. He has independently studied the Revolutionary War, Civil War, WW I, WW II, and the military actions after that. He knows and appreciates politics due to his understanding of the presidents. He understands social issues from the past and current and is passionate about the rights of all. He is a “progressive” political thinker. He has no issue with discussing politics with anyone and has studied and researched enough to have a very sophisticated conversation or debate. Pleasantly surprising to my husband and my oldest son, our “Auttie” caught the sports fever. This occurred in sixth grade. He now is well read about every sport and is eager to always learn about new sports. He knows the statistics of teams, history, and players. In addition, he keeps abreast of social issues when players or coaches are involved. He also has decided playing the sports are fun, too. He has joined the cross-country team and track team. But the bravest move he has made has been trying out for the high school basketball two years in a row. This is exceptional because he has never played basketball other than shooting into our hoop which is on the dirt, on an incline on the edge of our property. During try-outs, his peers cheer him on and support him. Although he did not make the team, he will try out again next year.

So why is it when my “Auttie” likes a novel topic, why must I say his perseverating? Is it because I am afraid neuro-typicals might perceive it as an obsession? Yet when a neuro-typical obsesses they verbalized it is their hobby. Maybe it goes back to the fact that “Auttie’s” have a communication issue therefore, they can’t defend their actions.

All I know is that my son has been able to move from one learning desire to another which has benefitted him to be able to connect with many people in many places. His sports smarts and watching me blog has given him the desire to out do me and show off his knowledge by blogging. He boasts to me that if I read his blog it would be like him reading a book in Spanish… and he is right. His technical language is precise and his insight is knowledgeable.