November '08 Monthly Bulletin
(meeting held: November 19)
Protect Allergic Kids Support Group Meeting
Guest speaker:
Patricia Bass, LCSW-R
Agency for Individual and Family Counseling
341 Jayne Blvd.
Port Jefferson, NY 11776
phone/fax 631-928-6565
Cristina Stainkamp welcomed Patricia Bass to the PAK advisory board. Dr. Daniel Mayer, Rita Molloy and Doreen Cordova are PAK advisory board members, as well.
Anaphylaxis is recognized under Americans with Disabilities Act (ADA) as a disability. This is the second time Ms. Bass is a guest speaker for PAK.
Ms. Bass noted that she has two openings available for free- to low-cost help from a social work intern: one opening for marriage therapy and one opening for family counseling. Also, an unemployment support group is forming (free- to low-cost) on Sunday evenings. If interested, call intern Shana Covil or Ms. Bass.
Ms. Bass explored a variety of questions with the group including: How do you get over the overwhelming feeling when your baby is first diagnosed with an allergic disease? Parents may feel "crappy, worried, inadequate, not know what to do, same as grieving. The expectation is that you will have a healthy baby. Parents can go through denial, disbelief, shock, anger and--if feelings are turned inward-depression and 'Why me?'" A parent can be irritable, cranky, go back and forth with feelings. One may reach a bargaining phase, thinking, "If I had done...would that have made a difference?"
From personal experience, Ms. Bass described the scary feeling of knowing one's body is shutting down from anaphylactic shock from allergic reactions to medications.
She emphasized that there's not just one way to parent. It's what works best with your family. After the last phase of bargaining comes acceptance which she described like a scab on a wound that reopens. Feelings may be ripped open again in waves.
Parents are dealing with grieving and for some, postpartum depression or hormones. Reaching a place of acceptance doesn't mean it's there permanently.
The feelings of not having control, raised feeling of anxiety may result in going through some of the phases again. She noted that level of anxiety and guilt goes along with parenting, whether or not one is dealing with food allergies.
Acceptance is a phase where you'll accept the allergy as part of your life. Even if the allergy goes away, the experience doesn't go away. It is a stressful, difficult, different experience of raising a child.
Ms. Bass posed the question: How do you get over the overwhelming feelings? Answer: You get over it by experiencing the overwhelming feelings of grief. The way to get over it is to accept that you're not going to get over it. It is a string of emotions. Don't be surprised if feelings return. Be gentle with yourself. If the sadness or rage interferes with your functioning than you need counseling and possibly medication. With postpartum depression, the possibility compounds.
The social and psychological issues impact many areas including holidays, friends, parties, baseball games, and so on. One may have friends that don't understand or that are insensitive.
You need to be able to confront someone with a boundary. You need to learn the skill of how to advocate. Ms. Bass said, "The people you're setting boundaries with may have difficult personalities!" Adjust your message accordingly, for example, when dealing with schools versus family. You need to find strategies for many personalities and it's a skill learned by practice.
The feeling with setting any kind of setting boundary, Ms. Bass explained, is that you feel bad and you feel guilty. Know that you will feel guilty and bad when setting a boundary. It gets easier the more you do it over time (e.g., saying "No"). Communication is huge.
Dreams are healthy and a way of problem solving. Nightmares are a problem that means there's a disturbance or concern. Another area to watch is mood. Is your mood interfering with the ability to function? Watch your mood. If its an ongoing problem and you're not pulling out of it, go to a therapist or a psychologist to talk. A Serotonin level may be out of balance and medication after a year may correct it.
What is a psychological concern with children? You'll see a "low frustration tolerance in the child" and one who is easily upset about things and less able to manage the day-in and day-out stressors. One may see frequent crying or the child losing interest in things they take pleasure in normally. Validate their feelings and assure them they're not always going to feel crummy.
With these signs, it is an issue to take seriously and go to the next mental-health step: a social worker, psychologist, mental health professional or child play therapist. There are tools to use for children at different ages. A lot of times, the problems that are manifesting may be minor underneath. Medical experiences are scary. Panic attacks can mask a lot of other medical issues. Go to psychologist, social worker or maybe a psychiatrist.
At home, validate your child's feelings. Telling them it's OK to feel how they feel. They're happy to have the words to describe their feelings ("Yes, I'm worried") and may be struggling to tell you something.
If they're not talking, feelings need to come out verbally. With an expression such as music or dance, children can deal with their emotions. Don't stuff feelings inside. If parents don't, children won't. Take care of you in order to take care of others. It's really important to do nice things for yourself and it's an important lesson for all (e.g., indulging in a massage).
Watch out for siblings. Do they feel left out? Are they seeking attention in negative ways to get attention?
Ms. Bass explored helpful tools on how to communicate with children using role playing. At age 2, children will test you with tantrums. The good thing is they can only think in all or nothing terms, no or yes, very easy.
From age 2 to ages 4-8 she gave an example of creating a simple picture book with your child. She displayed "Troy's Story" and a story sequence showing happy at school, playing together with friend, lunch time, takes bite of cupcake, Oh no! Troy gets sick, ambulance, scared and sick, labeling feelings, wants mommy and daddy, doctors and nurses help Troy feel better, goes home with parents, love you, happy, school, playing, no more sharing food, the end.
Create a story for your child. It's called a social story. You can do a social story with any subject. Story teaches the child not to be terrified of doctors and nurses. Do not scare the child with the story. Work through the issue. The end of the story is all "We" as in "We all love..." playing ball, etc. Show how much the child is just like other kids, we're all the same as in "We all like to read books or dance, etc. Show the reaction. With a social storybook you are giving coping skills.
With sleeping issues a child doesn't know what will happen when the parent is not there. Create a social story that's safe, peaceful, and the end of story shows the sun coming up after a safe night's sleep with a happy day to come. Always have a happy ending.
Try adding siblings in a story or make two books. Put everyone in the story, including the family pet. In a child's mind, their dog's feelings mirror their own. The star of the book is child you're writing about.
By age 10, social stories like these are not likely to work. Best for Preschool and early elementary years. Book series or videos like FAAN's "Alexander the Elephant" who can't eat peanuts may help. Check the FAAN children and teen website at www.foodallergy.org.
Children at ages 4-5 are in the egocentric years thinking "Everything is there because of me." This is the beginning and formation of self-esteem issues. Even with divorce, kids may think it's because of them.
With anxiety issues for children ages 5 and younger try bubbles. When we're anxious, we do deep breathing. Take a breath, and then blow a bubble. Teach children to pretend they're blowing bubbles or blowing a balloon. Take a deep breath in and blow. This activity may be helpful in a hospital situation.
Another activity to try is "The Worry Bee." Create a simple bee on paper and on the stripes children can list what they worry about (e.g., I worry about milk, I worry about homework, I worry that my friends won't like me, I worry that my teacher won't like me, etc.) Tape the bee to an inflated balloon and let go. All the problems fly away. This play therapy activity helps children with expression and getting their feelings out. Or try blowing up balloon, tying it and writing on it what you're worried about (e.g., I hate peanuts, allergies, etc.). Then pop it! Child may sit on it and try to pop it for giggles. This is a good tool for working through feelings for ages 7 and under.
We need to validate children's feelings. Adults may have to help the child verbalize what they're feeling and label the emotions. Give the child names of words to show how they feel. Tools to help children with emotions include social stories, "The Worry Bee," play dough. If a child feels angry with kids that weren't nice, pop a balloon, step on it, get the feelings out.
Another helpful tool is role playing by doing self-esteem building activities and integrating the allergies. Ms. Bass said, "It is truly all about communication and teaching the child how to educate the people around them." Teach the child how to educate people around them while tossing ball. Teach them words they need (e.g., "I can't have that peanut butter," etc.). Throw a ball at wall to get feelings out (e.g., "I hate eating alone") and to reduce anger and stress. The goal is communication. Start young teaching children how to handle their allergies so you're integrating the subject and teaching that it is not bizarre or different, just a normal topic to discuss while tossing ball. This is self-esteem building.
Expression of emotions comes in words, physical activity, art, dancing, music (e.g., in art, Pollack's throwing paint to create pictures).
Teenagers and tweens ages 10-12 pose challenges because teens engage in risky behavior and they are the highest risk group for experiencing an allergic reaction. Almost 1/2 of teens were willing to eat a food they might be allergic to due to peer pressure. Friends must know and the communication piece is huge. Teenagers feel different from everyone else, no matter who they are.
From ages 2 through the teenage years, baking and cooking is helpful. Cook and bake with them so they'll know how to do it when they're older. Teach them to read a label, cook, and bake.
With teens and moms, try role play to open a food allergy discussion. Do what's typical teenage stuff that's self-esteem building, not related to food. Join them in a video game or shopping and ask "How did you feel about that?" or "What's it like for you?" Ask them to tell you, rather than you tell them. Teenagers don't know they're not adults. Earlier ages are critical to get communication going on educating people around them, teaching them to tell their story to everyone. They'll have the skill set to tell people. Children need to learn to communicate with teachers. Maybe help the child write a letter to their teacher.
Ms. Bass advised, "Teach them how to communicate effectively. That's the defense and the answer." Food can't work for rewards and reinforcements. School kids need to learn to think of others so we can all live in harmony. She closed the discussion with soft music and a guided-imagery exercise for relaxation to help calm anxieties that come with dealing with the special needs of our children.
PAK Disclaimer:
It is the consumer’s responsibility to check all ingredients to ensure safe indulgence. PAK is not a professional or medical organization. It is a group of parents sharing information and supporting each other. The discussions, meeting minutes, handouts, guest speakers, agendas, and other products of our support group do not constitute medical/legal advice and should not be relied upon as such. Always discuss individual health questions and medical issues with a qualified personal physician.
In regard to Guest Speakers, the purpose of the presentations is to provide a variety of opinions on the spectrum on allergy issues. By no means is PAK adopting the views of its speakers, or endorsing them as medically accepted in the community. It is up to the guests to weigh the persuasiveness and acceptability of the presentations, based on their own knowledge and research.
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