Category Archives: Resources for Caregivers

How We’re Navigating Summer Break With Kids Who Thrive On Structure.

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Ah summer! We’re talking flip flops, sunglasses, bike rides, hanging by the pool, staying up late, catching fire flies, and then sleeping until we wake up the next morning. Nothing better, right? But when you’re parenting kiddos with special needs, who thrive in a structured, routine-driven environment, summer can spell disaster.

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I get it. I’m the parent of eight children, three of whom have major special needs that range from sensory processing needs to hyper-activity and extreme anxiety. Three of my children have been diagnosed with alcohol-related neurodevelopmental disorder, which falls under the umbrella of fetal alcohol spectrum disorders.

They thrive in structure…all the time. Because drug and alcohol exposure in-utero caused damage to the pre-frontal cortex of their brain (where executive functioning skills like reasoning, logic, impulsivity control, and social awareness exist) they are often incapable of lax schedules, easy-going days, or little to no routine. If you’re in this trench currently, you understand this full-well. And, your summers are anything but easy-going. In fact, much like us, you’re on-duty constantly, sometimes throughout the night.

This is our normal. This is what we are signed up for. But for many, it’s taking the life out of them, especially if they are fairly new to this journey, or parenting children from traumatic places. We know exactly what you’re walking through right now. We’ve been there and are still there in many regards. Even though we are a few years down the road in terms of parenting children from trauma, we still have to figure this out every single spring, before summer begins.

Here’s how we’re navigating summer break with our kiddos who need structure:

  1. Create a routine. During the school year, we live and die by routine — even our weekends are structured around this. But what about summertime? It’s tough because you want to let things go, not have a set bed time, not have a set wake-up time, or midday schedule. But at what cost? I know it feels restrictive to keep your routine in place during the summer, but it’s much worse to live in chaos.
  2. Set expectations ahead of time. Right before summer starts, we explain the expectations for summer break to our kids. We go through chores and incentives for completing said chores. We also share the schedule and structure we are creating for them (and us). We explain why we are doing this and remain crystal clear on how this will help us have the best possible summer break together. This will look different, and certainly sound different in your home, but the sooner you can do this, the better. It’s not too late, so start now!
  3. Be intentional with downtime. This is as simple as gathering your kids around for a movie, board game, or even going on a family bike ride. Realistically speaking, when you are raising children with special needs, there is really no such thing as downtime. However, “unscheduled” time can be intentionally structured.
  4. Build in fun education. Where we live in Central Indiana, we have several park nature centers where our kids can have fun and also learn. It keeps their minds stimulated and gives them a focused activity. Zoos are great for this. Another avenue for fun education is through your kids’ school. We asked teachers before the school year ended to provide summer reading schedules and incentives. It’s a win for our school as much as it is for us.
  5. Publicize the daily schedule. In conjunction with your routine, you need to create a visible daily schedule. One of our sons is on the autism spectrum and continually asks, “What’s next?” We decided to create and publicize the schedule for him to see and it helps. When his brain is telling him to ask and ask, he’s able to visit our kitchen’s bulletin board and read exactly what we are doing next. While we don’t really mind the repeat questions, the visible schedule reassures him and gives him security.
  6. Repeat, repeat, repeat. Our good friend, Dr. Ira Chasnoff from NTI Upstream has a great perspective for helping kiddos like ours navigate through their days. He says, “Whatever you do one day, repeat the next. The key is to repeat, repeat, repeat.” No matter what, repeat, repeat, repeat. The only way to build up consistency with your kiddos and your routine is repeating the same thing every single day.

Our new normal functions differently than families with children without special needs. When I accept what is, I’m able to not only see the beauty right in front of me, I have the chance to create memories with the beautiful children I’m blessed to call mine.

Here’s to summer — and your peace of mind!

Check out more posts by Mike & Kristin Berry that offer hope for families in the trenches at: http://confessionsofanadoptiveparent.com/ourstory/

Retrieved from: http://confessionsofanadoptiveparent.com/how-were-navigating-summer-break-with-kids-who-thrive-on-structure/

How thinking about behavior differently can lead to happier FASD families

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A new study from the University of Rochester sheds light on how parents and caregivers of children with fetal alcohol spectrum disorders (FASD) can best help their kids, and at the same time, maintain peace at home and at school.

“Children with FASD often have significant behavior problems due to neurological damage,” says Christie Petrenko, a research psychologist at the University’s Mt. Hope Family Center.

Petrenko and her colleagues found that parents of children with FASD who attribute their child’s misbehavior to their underlying disabilities–rather than to willful disobedience–tend to use pre-emptive strategies designed to help prevent undesirable behaviors. These strategies are likely to be more effective than incentive-based strategies, such as the use of consequences for misbehavior, given the brain damage associated with FASD.

The study included 31 parents and caregivers of children with FASD ages four through eight. Petrenko and her team analyzed data from standardized questionnaires and qualitative interviews that focused on parenting practices.

Petrenko says that the study, which is published in Research in Developmental Disabilities, shows that educating families and caregivers about the disorder is critical.

People with FASD often have problems with executive functioning, which includes skills such as impulse control and task planning, information processing, emotion regulation, and social and adaptive skills. As a result, they are at high risk for school disruptions and trouble with the law.

Parents who use pre-emptive strategies “change the environment in a way that fits their child’s needs better,” says Petrenko. “They give one-step instructions rather than three-steps because their child has working memory issues. They may buy clothes with soft seams if their child has sensory issues, or post stop signs to cue the child to not open the door. All of these preventive strategies help reduce the demands of the environment on the child.”

The study also shows that parenting practices correlate with levels of caregiver confidence and frustration. Families of children with FASD are frequently judged and blamed for their children’s misbehavior. Parents and caregivers who are successful in preventing unwanted behaviors have higher confidence in their parenting and lower levels of frustration with their children than parents who counter unwanted behaviors with consequences after the fact.

Petrenko says that evidence-based interventions for families raising children with FASD have been developed and show promise for improving outcomes for children and families. She and her team at Mt. Hope Family Center are continuing to further test these interventions and identify what strategies and approaches are most effective in getting evidence-based information to families.

UNIVERSITY OF ROCHESTER

Retrieved from: https://www.eurekalert.org/pub_releases/2016-11/uor-hta111816.php

Tips for School Success

Thanks for to our tip sheet committee for putting this together for us.

school-tips

Click image to download tip sheet

Please note that you can find this and previous posted tips sheets on the following links.

Specific Tips

https://edmontonfetalalcoholnetwork.org/resources/tip-sheets/specific-tips/

Seasonal and Holiday Tips

https://edmontonfetalalcoholnetwork.org/resources/tip-sheets/seasonal-holidays-tips-sheets/

Relationships

https://edmontonfetalalcoholnetwork.org/resources/tip-sheets/relationships/

Last but not least – FASD Support Network of Saskatchewan Tips

https://edmontonfetalalcoholnetwork.org/resources/tip-sheets/fasd-tips-for-parents-and-caregivers-1-20-by-fasd-support-network-of-saskachewan/

New Guidelines To Prevent Sudden Infant Death Syndrome Released

The American Academy of Pediatrics has new advice out for parents to protect babies from sudden infant death syndrome. SIDS claims the lives of about 3,500 babies each year in the U.S

Source:  http://www.npr.org/2016/10/24/499121066/new-guidelines-to-prevent-sudden-infant-death-syndrome-released

 

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Photo Source: Sudden Infant Death Syndrom (SIDS) – WordPress.com

 

DAVID GREENE, HOST:

All right. We have some tips now for new parents. The American Academy of Pediatrics is releasing new advice today about how to protect babies from Sudden Infant Death Syndrome, or SIDS. SIDS claims the lives of about 3,500 babies each year in the United States.

RENEE MONTAGNE, HOST:

Pediatricians say there are some very simple things that can sharply lower that risk. A big one – always put babies to sleep on their backs, never on their stomachs. And also on a very firm surface, such as a crib with a tight-fitting sheet. Never let a baby sleep on a soft couch or chair.

 

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Photo Source: whakawhetu.co.nz

 

GREENE: The new recommendations also advise parents to keep their sleeping babies in the same room with them at night, preferably for a full year, but at least for the first six months. Here is Rachel Moon, who helped write the new guidelines.

RACHEL MOON: We do know that if a baby is in the same room and not on the same surface as a parent, that the risk of dying is halved compared to if the baby’s in a separate room.

 

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Photo Source: Sites.google/site/sidesthesilentkiller/prevention

 

MONTAGNE: And that’s pretty big. So, again, an infant should always sleep in his or her own crib or bassinet, and never with anything that could smother a baby, like crib bumpers, blankets, pillows or soft toys.

Disclaimer:  The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.

 

Coaching Families Caregiver Support Group – November 08, 2016

Attention Parents/Caregivers of children and adults with FASD

Would you like to meet other parents and caregiver like you?  Well, this is your chance! You do not have to be a client of this program in order to attend this support group. It also doesn’t matter if your child is over the age of 18!

Here is what you can expect, meeting parents/caregivers like you and collectively problems solve, share successes and generate ideas.

Do you have little ones at home and can’t find a babysitter? No problem! There will be a limited child programming for those who can not find a babysitter.  Please let Roxanna know how many children you intend to bring so they are able to provide the best possible experience for you and your children.

Kindly RSVP by November 04, 2016 to Roxanna Clermont by:

Phone: 780-721-2236 OR Email: Roxanna.Clermont@cssalberta.ca

 

 

FASD 24 Hours Supervision Tip Sheet

Please find below supervision strategies for parents parenting children with FASD.

 

 

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Click image to download pdf

Please note that you can find this and previous posted tips sheets on the following links.

Specific Tips

https://edmontonfetalalcoholnetwork.org/resources/tip-sheets/specific-tips/

Seasonal and Holiday Tips

https://edmontonfetalalcoholnetwork.org/resources/tip-sheets/seasonal-holidays-tips-sheets/

Relationships

https://edmontonfetalalcoholnetwork.org/resources/tip-sheets/relationships/

Last but not least – FASD Support Network of Saskatchewan Tips

https://edmontonfetalalcoholnetwork.org/resources/tip-sheets/fasd-tips-for-parents-and-caregivers-1-20-by-fasd-support-network-of-saskachewan/

 

Anxiety & FASD

Each time I come across posts by @FASD-Dad and @FASD-Mum, I find myself nodding with agreement to each and every sentence.  They write about things I have seen other parents parenting with FASD talk about yet, the rest of us are not willing to accept these kiddos for what they are. Their anxiety, fear, and meltdowns are not anywhere near that of a “normal” child.

Source: https://fasdlearningwithhope.wordpress.com/2016/09/23/anxiety/

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By @FASD_Dad

Anxiety. We all get anxious about things. We’re late for an appointment. Can we afford to get a repair on the car done?  Does that girl I like like me too?  (Turns out she does and in a long and roundabout way that led to this blog.)

That anxiety is real, but compared to the anxiety our son feels, every day, all the time, about everything, our anxiety is trivial.

Our son is a boiling kettle of anxiety, says the counsellor who is helping us learn how to better care for him. That’s his normal state. That’s why, when something goes wrong or doesn’t go as he expects, he blows into a full scale meltdown almost immediately. A meltdown where things get thrown. Where kicks and punches are thrown. Where his little frame is rigid with tension because he simply cannot bear the pressure in his brain. Where his senses no longer work to help him interpret the world around him, but are screaming at him to fight! Fight! FIGHT!

So what causes this terrible anxiety? Well, in common with many kids with Fetal Alcohol Syndrome, pretty much anything. Our son has such a hard time understanding the world around him, his social relationships, the tasks he has to manage at school, that everything causes him to worry.

In the last few days it has manifested itself in different ways.

Does the dinner he loved yesterday taste very slightly different today? Or is it a little too hot? Or a little too cold? That’s a massive sensory problem which can mean dinner is thrown across the room. Or it could just mean a refusal to eat a meal and a retreat into his safe space to watch videos.

Are we going to a new gymnastics club? Somewhere unknown? That’s a huge source of anxiety which means it is really, really hard to get out of the door. We have to find exactly the right bandana to make it ok. Is the new gymnastics club different? Do they do the exercises slightly differently to the previous club? That means they’re doing it wrong, so he can’t join in, he has to sit and watch. And, because the hall is smaller and the noise too intense, the sensory input becomes too much and his anxiety levels start to go through the roof. So we have to leave. And now we need to find another gymnastics club because his original one was all girls and him, and that’s worked for several years but now he wants to be with boys, doing boys gymnastics.

Are we off for a walk with the dog? Well, the dog mustn’t be let off the lead because if he’s off the lead he might run away.  If he is out of sight for a second he might have run away, and the panic in our son’s voice is palpable. The dog, you see, ran away once. He got far enough away that he was taken to the pound, and we didn’t get him back for 24 hours. And so, for our son, the anxiety of losing his beloved pet is ever present. Something else to add to the list of things that add to his anxiety.

There’s swimming at school. But the message didn’t get to us, so he has to do hockey instead of swimming. That’s not right because the timetable says swimming.  Right there, that’s enough to spin him out of control and into meltdown. But at school, barely, he holds himself together, and then at home as he lets the pressure valve go.  With us he knows it is safe to let go, the meltdown starts and goes on and on. And a week later, the worry about whether we know it’s swimming and does he have his swimming kit in the bag comes bursting out as we try to get him out the door to school. Yes, we know, it’s here. Is it here? Yes, the kit is here. I have swimming today, do I have swimming?

The pressure his anxiety puts on him is horrible.

So what’s the effect of this? Of living on the edge all day every day? Of worrying about everything around you in such an intense way.

We’re constantly worried about him and his mental health. We are constantly concerned that our son will crack under this pressure, lose what ability he has to cope with life.

What is the long term effect of living with this level of anxiety on the rest of the family? For our family it puts us all on edge. Our elder non-FASD son is a calm boy, but when his mum and I argue, as we sometimes do under the pressure of dealing with yet another meltdown, he cracks and shouts at us to be calm. His worries are just below the surface too.

For us, it means living with uncertainty all the time. Wondering when the happy, smiling little boy in front of us will suddenly flip into a raging little bundle of doubts and fears, unable to process his anxieties and lashing out at those around him.

So we’re trying to give him tools to regulate himself. A mood chart, from a calm, blue sea to a raging storm so he can learn to express how he feels, something he really cannot do very well at the moment. We try to use it with him when he’s happy as well as when his mood is deteriorating, helping him to learn a vocabulary to tell us about himself.

We’re trying to be better about regulating the environment around him. Making sure each day that he knows what will be happening, what we’re doing, what he will do. No surprises is the rule. Over the summer we had stopped using the family white board to write was coming up – and he just asked us to start that again. A small sign of growing self-awareness – he needs to know the routine of the day.

When his mood cracks and the signs of meltdown are obvious we’re improvising on tools the therapists gave us. We use sensory stimulus to distract him from meltdown. Pretending with a variety of pressures that he is in a sandwich, he is cheese that melts; or a piece of hard pasta that gets wiggly when it’s cooked; an ice cube that melts, or an egg that cracks. At the moment this technique has a sometimes remarkable effect. Twice in one day it altered a mood that was darkening, and forestalled the descent into full sensory dysregulation.  We have learned some tips to try to head off the meltdowns.

We have to help stop the kettle boiling over, and find a way to take the pressure off so it isn’t ready to blow at any second. It’s tough. But for his sake, we need to find a way.

Disclaimer:  The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.

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