Autism Grandparents and Eating Issues

[NOTE: My almost-five-year-old granddaughter, who lived with us her first few years, has had a lot of eating issues, including the need for a g-tube for a couple of years. She has received treatment from developmental pediatricians, gastro-intestinal specialists, nutritionists, OT therapists, etc. Thankfully, today her eating issues are mostly gone. There has been no magic bullet or wonder-cure or miracle therapy – just lots of worry, lots of trying all sorts of things, lots of professional care, and lots of love and praise.]

It is common for children on the autism spectrum to have eating issues. And there are things that we autism grandparents — even if we are not frequent caretakers of our grandchildren — need to know. And there are things we can do.

WHAT WE NEED TO KNOW :

1. Medical and/or dental problems can be a cause of eating issues. One research study (Buie & Krigsman) suggests that at least 50% of children with ASD have significant gastrointestinal symptoms such as GERD, chronic constipation, abdominal pain, etc.
   

2. It is common for parents to be blamed for their children’s eating issues, but such blame is not warranted when it concerns children on the autism spectrum. There are many, many, many causes for their eating issues. (We autism grandparents won’t be among those who blame our grandchildren’s parents.)
   

3. Autism professionals recommend and practice a diverse variety of feeding therapies and protocols – some that may be productive for our grandchild, and others that may be counterproductive. But whichever is selected, it should result from careful research of information provided by reputable third-party professional sources, and not simply from information provided by the practitioner.
   

4. It is common for children on the autism spectrum to have sensory aversions. This means that they respond negatively to specific smells or tastes or colors or textures (for example, they may like crunchy foods, but not smooth), or food temperatures (it is common for children with ASD to prefer foods at room temperature and be intolerant of foods that are either hot or cold), or noise level (e.g. lots of ambient noise during meals), or bodily sensations (e.g. chair too high or too hard, etc.), etc.
   

5. It is common for children on the autism spectrum to be extremely selective with foods. Some children with ASD eat mostly foods that are either sweet, sour, bitter, or salty. Some learn that all foods are better with certain condiments (such as catsup).
   

6. Other things can be issues, such as visual appearance (specific plates or napkins, location of food), socialization (whether or not other persons are there), transitioning from finger food to utensil food, etc.
   

7. Often children with autism don’t feel hunger pangs or exhibit signs of hunger or answer “yes” when asked if they are hungry. Therefore it is usually a good idea to serve food at regular intervals whether or not there are signs of hunger.
   

8. Feeding issues often get far less attention than other issues and challenges that confront children with autism. Thus we grandparents can be helpful with our attention to, and support for, progress regarding feeding issues.
   

9. As with most issues and challenges with autism, the focus should be on achieving and celebrating a series of tiny steps of progress. (For example, rather than an initial goal of eating a full helping of a newly introduced food, have an initial goal of simply tolerating the existence of that food on a separate plate during the meal.)
   

10. Parents of children with autism often hear, even from some medical professionals, words such as, “Don’t worry; she’ll eat when she gets hungry enough.” Or, “All children go through phases with food issues.” Such comments are not founded in a knowledge of feeding issues among children with autism.

WHAT WE CAN DO:

1. We can offer to our grandchildren’s parents that we can do research on feeding issues affecting children on the autism spectrum. Parents are sometimes so involved in daily tasks and challenges that they don’t have time for research. There is a wealth of information on the Internet, and we can offer to share with them what we learn. And we can be careful to give credence only to reputable sources. (The Internet world of autism – as with everything else – offers plenty of snake oil.)
   

2. When our grandchild is in our care we can refrain from scolding or being negative regarding feeding issues. We can be positive during meals (rather than viewing them as battles) and be liberal with praise for every bit of success.
   

3. When our grandchild is in our care we can see that our grandchild is involved with physical activity or exercise prior to meals. (Often such activity stimulates the appetite.)
   

4. When our grandchild is in our care we can try to make food and meals fun. (Making up songs or stories about food items, pretending with toy food items and dishes prior to the meal, allowing our grandchild to “play” with the food, etc.)
   

5. When our grandchild is in our care we can accept the possibility of tantrums, and can plan to ignore tantrum behavior (unless it is dangerous), and instead put emphasis on praise when warranted.
   

6. When our grandchild is in our care, we can eat together (unless socialization is off-putting) so our grandchild can observe and possibly mirror our actions.
   

7. When our grandchild is in our care, we can refrain from food “tricks” such as hiding vegetables in spaghetti sauce etc. (Once our grandchild recognizes a trick, he may decide not to trust any food.)
   

8. When our grandchild is in our care, we can keep a feeding journal and share it with our grandchild’s parents. Such documentation can often lead to a recognition of patterns of behavior that will enhance an understanding of our grandchild’s issues and thus result in strategies for progress.

There are many different strategies and therapies that are recommended by a variety of autism experts regarding eating issues. What works for one child may not work for another. But learning about current expert advice can help us autism grandparents better understand and empathize with the significance of this challenge for our grandchildren and their parents. And this knowledge can position us to provide helpful advice and suggestions — but of course only when truly welcomed and not viewed as interference. We grandparents can be a great source of love and positivity!

Autism Grandparents and Toilet Training

Toilet training is perhaps the single skill/ability that has the most impact on the most areas and activities of our grandchildren’s lives. And there are things that we autism grandparents need to know and things we can do.

WHAT WE NEED TO KNOW:

1. It is common for toilet training to take a long time. Research has determined that children on the autism spectrum begin toilet training at an older age than do neurotypical children, and that it takes a lot longer. (A 1992 study by Dalrymple and Ruble found that it takes an average of 1.6 years, and longer for bowel training.)
   

2. It is common for children with autism not to show “normal” signs of having to use the toilet, such as holding themselves, crossing their legs, nervous “dancing,” etc. (Sometimes a child’s “sign” is simply a certain way of looking at you.)
   

3. Frequency of bowel movements varies – from 2 or 3 per day to 2 or 3 per week. And it is common for children on the autism spectrum to “hold” the bowel movement until they are away from the toilet.
   

4. It is common for children with autism to have anxieties or fears associated with toilet training: fear of a big hole with water in it, anxiety about being in a small enclosed room, fright from the flushing sound, etc.
   

5. Medical problems should be ruled out prior to toilet training. (The child’s developmental pediatrician can often do this.)
   

6. Praise and reward are necessary for satisfactory long-term success and pride. Punishment and scolding can negate self-pride and be counterproductive to long-term success.
   

7. Our grandchildren’s parents/guardians are in charge of our grandchildren’s toilet training, and it is helpful when our efforts complement theirs.

WHAT WE CAN DO:

1. We can offer to our grandchildren’s parents that we can do research on toilet training for children on the autism spectrum. Parents are sometimes so involved in daily tasks and challenges that they don’t have time for research. There is a wealth of toilet training information on the Internet, including free online guides available from Autism Speaks, Autism Parenting Magazine, Marybarberra.com (private company that also sells things), and others.
   

2. We can offer, as a result of our research, to develop a plan that all of our grandchildren’s caregivers can follow regarding toilet training. NOTE: Developing a toilet training plan requires extensive thought and research. All of the professionally developed and proven plans for toilet training for persons on the autism spectrum include details such as time schedules, visual aids, specific rewards, specific communication, types of praise and reward, necessary motor skills, hydration schedules, etc.
   

3. When our grandchildren are in our care, we can use the same words (e.g. “toilet” or “potty”?) and images (if the training plan calls for images) that our grandchildren’s parents use.
   

4. When our grandchildren are in our care, we can happily praise every successful step, even the small initial ones such as being able to sit on the toilet for five seconds.
   

5. When our grandchildren are in our care, we can immediately reward significant success by providing a special treat (favorite candy, use of the iPad, surprise toy, etc.).
   

6. When there is an accident when our grandchildren are in our care we can react and clean up in a matter-of-fact manner and without emotion. (We can save the emotion for success.)
   

7. When our grandchildren are in our care, we can document every aspect of toilet training (specific times each day, successes, accidents, circumstances that may have contributed to successes and accidents, etc.).

There are many different toilet training plans and strategies that are recommended by a variety of autism experts. What works for one child may not work for another. But learning about the current expert advice can help us autism grandparents better understand and empathize with the significance of this challenge for our grandchildren and their parents. And this research can also position us to provide helpful advice and suggestions – but of course only when truly welcomed and not viewed as interference. We grandparents can be a great source of love and positivity!

Life Plan for Our Grandchildren

We autism grandparents are often the persons who give more thought to our grandchildren’s long-term futures than do anyone else, including their parents. We’ve lived longer and have a first-hand appreciation for the value of a long-term view and the importance of planning for the long term. We are the ones who continually say to ourselves, “I wish I’d done thus-and-so when I was young,” or, “I wish I’d known to do thus-and-so when I was young.” And our grandchildren’s parents are often so busy coping with today’s challenges that they just don’t have the time or energy to do a lot of thinking and planning about the long term.

We autism grandparents can be helpful to our grandchildren’s families by offering to not only give serious thought to our grandchild’s future, but to also offer to take the lead in putting together a “Life Plan” for our grandchild.

But there is a significant caveat: this takes a lot of time, a lot of research, and a lot of thinking.

As an autism grandparent myself, I need to understand and accept – and get my granddaughter’s parents to understand and accept – that my granddaughter may well outlive all of us. There may come a day when she has no living members of her immediate family. What can be done now to help ensure that when that happens she will continue to have a good quality of life?

And, as the year 2020 has confirmed, no matter how many safeguards and assurances are put in place, nobody can plan for the unexpected – such as a global pandemic. What can we do now to ensure quality of life even if there is an unanticipated crisis?

My granddaughter’s Life Plan should contain the following thirteen components – and each one documented in a Life Plan Notebook.

1: MONEY

What are the sources and amounts of money that are needed to support my granddaughter for her entire life? Should there be a Special Needs Trust? An ABLE (Achieving a Better Life Experience) account? Will she have the ability to earn money? A professional financial planner can help with all of this.

2: LEGAL CONCERNS

Who are the legal guardians for my granddaughter? What about when/if they are no longer available? Should there be someone appointed as power of attorney, and when might this happen? A special needs attorney can be helpful.

3: PUBLIC BENEFITS

What are the current and future sources of state and federal support and benefits for my granddaughter? When are the appropriate times to apply? How do you keep up with the various changes that continually happen with public support? Local social service agencies can be helpful.

4: DECISION-MAKING

When my granddaughter reaches adulthood, will she be legally capable of making her own decisions? If not, will she have a legal guardian who can make good decisions? If she IS capable, should there be a person or group of persons who are willing to help her with her decisions?

5: HEALTH

(This topic is often broad and deep.) What are the details of my granddaughter’s current physical and mental health, including various therapies? What physical/mental health concerns can be reasonably expected for the future? What parts of her health history are important to document? Who are the professionals who currently treat her health concerns, and what is the plan for transitioning to other professionals as needed in the future?

6: ABILITIES/CHALLENGES

What are my granddaughter’s current abilities and what are her significant challenges? What are the reasonable expectations for the future? How is she currently dealing with (getting therapy, etc.) challenges, and what is the plan for the future?

7: DAILY ROUTINE

What is my granddaughter’s current school/daycare/activity situation and what are the plans for the future – including when she is no longer eligible for public-supported school? Is she a candidate for post-secondary education, and if so, what is the plan? Is she a candidate for getting a job, and if so, what is the plan?

8: GOALS

What are the top few significant goals for my granddaughter? And what are the steps towards reaching those goals? (For example, one goal might be developing some close lifelong friends. Another might be achieving the ability to do well with transitions – ranging from seemingly small transitions such as getting into a car to huge transitions such as moving to a new household.)

9: TRANSITIONS

What will be my granddaughter’s significant transitions? (Adolescence, changing schools, ending school, changing homes, death of family members, illnesses, etc.) And how can her family/friends continually help her prepare for them and make them as easy as possible?

10: LIVING ARRANGEMENTS

Where will my granddaughter live during the different phases of her life? (With her parents, independently or in a group home, in an assisted-living facility, etc.) Are there ways to plan and prepare?

11: SOCIALIZATION/INTERESTS

What are things that my granddaughter enjoys doing with others? Are there additional social activities that she might enjoy, and what can be done to initiate those involvements? Are there things that interest her when she is by herself? Are there additional things that might interest her? What can be done to nurture activities and interests so they can become lifetime enjoyments?

12: LOVE OF FRIENDS/FAMILY

What can be done to assure that my granddaughter is always – throughout her life – surrounded by persons who sincerely care about her? Is there an opportunity to nurture special friendships with much younger relatives who are not in her immediate family? Are there long-enduring groups or organizations – such as faith-based organizations – that can provide her with a sense of family? And if so, when and how should that involvement begin and be continually nurtured?

13: THE “VILLAGE”

Who are persons who might be willing to be members of my granddaughter’s “Life Team”? (Life Team members are willing to receive updates about her, willing to be called on for special favors and advice and support, and willing to confirm that my granddaughter is, in addition to members of their own immediate family, someone whom they care about and want to always be helpful.)

There are additional thoughts about the process of developing a Life Plan for my grandchild. First, she should be involved, as much as possible, in developing and continually modifying the Plan. That might mean asking her opinion about various aspects, and/or simply explaining things as they develop. Second, her Life Plan will be subject to ongoing modification as needed, and a total review at least every year or two. Third, the maxim, “Hope for the best, but plan for the worst,” should be in mind with every aspect of the plan.

And finally, whenever we get a chance, we should seek advice from persons who have aging adult special needs children and ask for their thoughts on what components and strategies can be helpful for our Life Plan.

We autism grandparents know first-hand that life is filled with challenges and changes and is impossible to predict. We can be very helpful to our grandchildren’s parents by offering to help develop an appropriate Life Plan. And, as always when we offer help and suggestions to our grandchildren’s parents, we need to do so with the clear message that THEY, not we, know what’s best regarding their children, and that we’re simply willing/able to provide whatever support and assistance that they’d like to have.