Written by: Chrissy Sunberg, M. Ed., AAC
The winter has finally arrived. For some families this time of year is welcomed and for others it can be dreadful. As for my family, we welcome it with open arms. It gives us a chance to slow down and relax on a Saturday afternoon. If you know me, you know that I love Netflix. There is nothing better than enjoying a good movie with my family, making popcorn and sipping hot chocolate. This has been a family tradition for us since my kids were younger. I think we had the opportunity to view every age appropriate tv show and movie. Comedies, dramas and educational shows/movies. I’m excited to share with our readers educational tv shows for children that have learning challenges and for the families that support them. Enjoy!!
Oldies but goodies:
Another thing I want to mention is that certain tv shows can promote learning and social skills for children that may have a hard time reading social cues, understanding sarcasm and reading a room. I suggest sitting with your child and making the learning experience more interactive. While watching you may want to discuss with them how to read facial expressions and explain what each situation means. Some questions you can ask are:
Photo from: Pexels
Written by: Dr. Liz Matheis
Featured by: PsychologyToday
Finding and maintaining your co-parenting alliance
Parenthood. It’s a journey that, when we enter into it, we’re not exactly sure what to expect. For many of us, it’s a bumpy journey with some smooth roads along the way. We get onto the parenthood road thinking it will be exactly like our idyllic own childhood—or nothing like it, if ours was rocky—while integrating our presently held values.
Many parents—though certainly not all—split parenting duties with a spouse or long-term partner, ex-partner, or another adult. When you take the experience of parenthood and multiply it by two, you can end up with either alignment or misalignment. That alignment is known as the co-parenting alliance (Abidin & Kobold, 1999). Misalignment in any parenting relationship can be downright ugly—but when a child with special needs is involved, it's even more critical that parents align themselves effectively to ensure the child is getting the care and support they need.
The Co-Parenting Alliance, Defined
Let me begin by defining the co-parenting alliance. In essence, it’s how parents split up the responsibilities of the home as well as the care-taking. In some homes, moms may tend to the inside of the house, as well as manage homework, doctor’s visits, and play-dates, while dads tend to the outside of the house and take the lead on sports and extra-curricular activities, maybe even finances. These more "traditional" configurations are not as common as they once were, and there are countless other configurations that are possible as well. But however the responsibilities are split, parents are aligned when they talk about and agree on household rules, expectations for behavior, school performance, consequences, and household finances.
Photo from: Pexels
Written by:Nicole Filiberti, LCSW
Planning an activity for your family to enjoy is no easy feat. Moods and irritability levels can change by the minute, sibling rivalry can take its toll, and unexpected changes in plans can all cause even the most well-intentioned plans to end in frustration and stress. When you add special needs into this mix, such as individuals with an Autism spectrum disorder, anxiety, behavioral challenges and more, another level of complications arise that require additional planning. Here are some ideas for family activities that cater to individuals with special needs.
Trampoline parks have been popping up in many towns lately. A lot of them have special sensory hours regularly built into the schedule. Check your local trampoline park's website or give them a call to find out if they offer this option. Very often, sensory hours include more staff supervision, limits on the amount of people allowed to jump at once, and a more quiet environment.
Another family activity could be enjoying a music class together as a family. Many music therapy offices offer ongoing classes or special events in which youngsters with special needs can connect and express themselves through the use of music. This can certainly be an event that the whole family could enjoy together, creating special memories.
Connecting to nature is another great option for a family to enjoy together. When the weather is nice, heading to a local park to explore and have a picnic can be a very enjoyable activity. There are plenty of sensory things to explore, touch and see. Other than park rules and regulations, you won't have to follow a whole lot of strict rules and can leave whenever you need to leave, staying for as little or long as your schedule and needs dictate.
Engaging in various activities as a family is a fun way to connect and create memories. For your children with special needs, making an effort to keep active as a family can help their social skills, increase self-esteem, and build life skills. There are plenty of resources listed on the internet and the next time you are at a skating rink, museum or gymnastics class, ask the staff if they offer any special programming for individuals with special needs. You just may be surprised by the options available.
Written by: Dr. Rick Manista
While family vacations are supposed to be a time of fun and bonding, traveling with children on the Autism Spectrum can be more challenging. Children on the spectrum are prone to meltdowns that can occur at the drop of the hat. Families have to be careful about sensory issues, dietary restrictions, schedules and how others respond to them. Here is a list of family friendly vacation destinations that are also autism friendly.
Besides getting all the chocolate you can eat, Hershey offers individualized service for families. Children on the spectrum can have a wide variety of symptoms and needs. Hershey partnered with Parent to Parent of Pennsylvania to create a new service. Hershey gives guests a questionnaire to families to identify their individual needs. The families then receive a detailed list of rides and attractions that would best suit the families. No unexpected surprises!
Legos are the most beloved toy of the Autism community. It is no surprise that Legoland offers amazing services as well. Legoland consulted with Autism Speaks to become entirely autism-friendly. They create simulating sensory activities, quiet areas, and training the entire staff on autism awareness and sensitivity.
The first cruise line to be called “autism friendly”, the Royal Caribbean has a wide variety of activities in a small settings. All of the staff members have been trained on autism awareness. They offer modified activities for children, sensory friendly shows, and sensory toys for children. Plush everyone would love the exotic ports of call.
With the water sports, kids clubs and amazing beaches, Beaches Resorts have partnered with the International Board of Credentialing and Continuing Education Starts to obtain their autism certification. Besides having a variety of dining options, they also offer “Amazing Art with Julia”, and art class with Sesame Street’s first character with autism.
Myrtle Beach was named the first autism-friendly city! A resident created an initiative to train hotels, restaurants and tours to be autism friendly. Families can get a “CAN” card that lists various businesses that participate. Families can get to the head of the line or even get a meal faster at a restaurant.
Shannon Airport became Europe’s first airport to have a sensory room. This room is for children and adults with neurodevelopment challenges to relax before a flight. The room includes a wheel projector, cooler-chaznign LED lights, bubble tube, and undulating wavy wall.
London has various quiet green spaces for families and calm museums to tour. The West End frequently has children’s shows and adaptive shows for children with autism. Many airlines, such as Delta and Virgin Atlantic, offer rehearsal programs for children, to help them prepare and know what to expect during their flight!
The best for last (and probably most expensive) Disney world offers a wide variety of accommodations for children on the spectrum. This includes a rider swap system, where one parent rides while another parent waits with a child, break areas, and tons of dietary options. For guests who cannot tolerate long lines, Disney’s Disability Access Service allows guests to schedule a return time for an attraction that is similar to the wait time. They also have a an online guide for guests with disabilities. They have also introduced “After Hours Events” where guests can purchase a ticket for $125, go to the park with no lines and all you can eat ice cream and popcorn! This option is great for children who cannot tolerate lines, crowds and the heat.
Exercise makes you physically feel better with many health benefits (I need to lower my cholesterol). Exercise also benefits your brain and can give us that clarity that we so very badly need in the midst of the “mom brain fog”. Your mood will be lifted as endorphins and other neurotransmitters are released.
In reflecting on 2018, I want to continue my quest to focus on mindfulness. Truly this was the best gift I gave myself this past year. Whenever I feel lost twirling in the tornado of life, I stop and give myself a moment... you will find yourself in the “Eye of the Storm” of calmness. It doesn’t stop the storm or our crazy life, but it does give you the tools to stay calm and enjoy the moments. I also been practicing self compassion for those moments when I can’t help but get swept into the storm before being able to ground myself again. It is a process and this is my journey that I will continue to work on in 2019.
My third resolution is to unplug with taking breaks from technology and putting down the iPhone. Learning to connect more in the moment with the people in the room verse feeling connected to those that are afar. Technology has so many benefits, but finding my balance is my goal for the new year.
Technology can be a slippery slope. For me, I find that I spent an exorbitant amount of time on social media. I know I’m not alone. In an effort to decrease my time spent on Facebook or Instagram, I stopped posting and disconnected from groups as well as friends I follow. For 2019, I want to unplug more and create more family time. We all struggle to leave work at work and set more distinct time for work and family. I will be defining my time and sticking with it for 2019!
My last resolution is to play more! Play heals the soul. Be silly. Enjoy life. I want to connect with my kids while also re-connecting with my inner child. With unplugging, I plan on starting family game night (my kids don’t know it yet but they will have a resolution of unplugging too)!
I’m looking forward to the new year, and hope that you will join me on making YOU a priority in 2019 with these New Year Resolutions:
Exercise - build a healthy body - externally & internally.
Mindfulness - building an appreciation for the moment.
Mindfulness will keep you grounded, focused and calm.
Unplug - taking breaks from technology and finding balance.
Photo from: Pexels
Written by: Dr. Liz Matheis and Featured by: The Mighty
Like I’ve said before, parenting is a tough job. It’s the most demanding, relentless, thankless job I have ever had. As a parent of three very different children, I need to parent each one differently because of their age, their needs and their personalities.
I’m an anxious person. I didn’t come into the world as an anxious person, but this life has turned me into one. I used to be a carefree child, happy, not really worried about the day to day. I had faith that it would all be OK. Then life happened. My father was diagnosed with cancer when I was 11 years old. Then with cancer again when I was 14 years old. Eventually, he passed away when I was 20. My life crumbled and was never the same again. Anxiety set in and it never left me.
Let’s fast forward to having my second child. A strong-willed, stubborn, loud, persistent child. She needs a lot and has no problem telling me how bad I am at meeting her needs. Yup. Good morning, sunshine.
Anxiety — it’s what I feel each day. When I can’t stop the cycle from spinning, I become mentally and emotionally stuck. The fear and dread over things that are going to happen, things that can happen and things that have not happened. It’s also the fear that when things are going OK, they may not stay that way.
As parents, we worry. We worry a lot. We worry about the past, the future and the present. We worry every day. We worry about the little things and the big things. We worry that we are not doing enough, or we are doing too much, or we are trying too hard, or we are not trying hard enough — all within the same day or even moment.
We worry that we have offended someone with our passion to give our children the therapies, supports and services they need in school and in the community. We worry about saying yes or saying no. We worry that we haven’t researched enough or maybe we have researched too much and now, our brain hurts.
It’s endless and it sucks.
Little Ability to Believe in Others
Anxiety means that you may not have the belief that things will work out because you’ve had enough experiences where they haven’t. It’s sometimes not believing that another person will be able to help you or that you can find solace and protection in another person.
Little Ability to Believe in Yourself
Anxiety can also be the residual message that “you can’t” even though you can and you have. It’s that message that automatically is negative, intimidating and belittling. That internal voice that says, “That’s too much! You can’t get that done. You can’t say that. You can’t, you can’t, you can’t.”
Be Kind To Yourself
The holiday season is a tough one with all the lists of “shoulds” and things to get done because of a ton of self-imposed rules. And as a parent of a child with disabilities, you may feel the need to follow in certain traditions that are really causing more stress and distress for everyone in your family. It’s OK to let something go.
Be kind to yourself. Scratch off a few of those list items. Let it go. Give yourself time and space to recuperate physically and emotionally. Create new traditions that work for you and your family. It’s OK if you do things a little differently this year. As a parent of a child with disabilities, each day may come with a plan, but sometimes, it’s OK to abandon that plan and just wing it.
Written by: Dr. Liz Matheis and Featured by: The Mighty
The birds and the bees…oh geez, do we really have to go there? Yes, we do. Our pre-teens or teens with disabilities, like all their peers, are going to have questions about their changing bodies and about sex. That need may be delayed or even come early, but the need is still there and we, as their parents, need to monitor what information they are seeking and how much to give them, just like we would for any child.
When your child is showing obvious signs of puberty: deepening voice, breast buds, body hair, body odor and an intense interest in the opposite gender, it’s that time to start planting the seeds for that conversation.
Several years ago, I worked in a private school for children on the autism spectrum. Many of our adolescent boys and girls were frightened by their changing bodies, and the feelings that came when a handsome young man or lady walked by. They didn’t understand what was happening, and it felt strange.
Keep it Simple
During that time, we engaged our school nurse to give simple lessons on body changes to our adolescent boys and girls separately. As a staff Psychologist, I read books about adolescence and created social stories specific to their areas of question or concern. We validated that these feelings were normal, these bodily changes were normal, and that other kids also went through these changes.
In our group, we had to bring up the topic of masturbation. More books, more social stories about this natural urge, and where and when it was appropriate (in the bathroom, in their bedroom, behind a closed door).
Parents were engaged to continue the discussion, emphasizing a few key points, but only when there was a need. We answered only their questions as they were asked. Two sentences, then stop. For our students who were shy, they wrote down their questions and we discussed together one-on-one or responded back in writing.
Wait for the Question
Instead of initiating a conversation about the birds and the bees, wait for your child to ask the question, then answer it. By that point, you will have provided a good amount of information leading up to this question, and so it will naturally flow. For example, you will have already had conversations about female and male anatomy and how it changes, the physical urges, masturbation, menstrual cycles, breasts and pubic hair. This process may be slow and can take up months or even a year. It’s OK — no need to rush. Just answer the questions as they arise.
Remember, just answer the question and build on information slowly, and follow your child’s lead!
Speaking with children about divorce can be a difficult undertaking. Parents and family members are sometimes conflicted with how much information they should provide the child and what type of information is important to share. Many children experience divorce, but how they react to the news and adjustment depends on their age, personality, and the circumstances of the separation and divorce process. Here are some thoughts to keep in mind when approaching your children about your divorce.
Don’t hide the truth from your child
We don’t give children enough credit for their accuracy in decoding parental issues and understanding complex feelings. After the parent has come to an agreement and a plan has been set in place a child should be made aware. Many parents do not tell their children about the separation and divorce until days or weeks after one of the parents has moved out of the house. There are many difficult and confusing feelings which will come up for parents, but keeping your children in the dark about the plan or your feelings will leave them feeling betrayed and deceived. It may also leave them ill prepared for other major life events. Child development experts agree that withholding the truth about their parents’ separation and divorce does not protect children.Children always do better in hearing the truth than in hearing a lie or misleading information from a parent. Furthermore, deceiving your child in this way may influence the trust dynamic you once had or it may result in your child feeling anxious during certain situations. It is not the parents’ job to protect their children from truth. Rather, parents should give accurate and truthful information, and then help their children deal with the feelings that are generated.
When telling your children about your separation and divorce it is important to take in to consideration their level of understanding and the way in which they interpret situations. What you many tell your six year-old will sound very different from your fifteen year-old. Both parents should come together before a discussion with the children in order to tailor the story so that both of them are on the same page. Divorce and separation is complex, multi-layered, and sometimes messy, but for the younger children these concepts are difficult to process. Children believe there is only one truth in any given situation. The idea that there may be multiple truths is beyond the grasp of most children, since it requires a level of abstract thinking of which children are not yet capable. Thus, in order to help children come to terms with the fact of their parents’ divorce, it is most helpful for them to hear only one mutual and consistent story of why their parents split up. However, when it comes to teenagers, your story can be a little more detailed and expressive. Remember that children should always be aloud to ask questions and express their feelings. This is also a good learning opportunity for children to see their parents manage a stressful situation and deal with difficult emotions.
Even after parents have done the work of explaining the separation, what may even cause more apprehension are the questions that may follow. First, parents must recognize their son or daughters feelings, reassure they will always be safe, and that Mom and Dad love them no matter what happens. Children and even teenagers need to feel a sense of security. Sometimes parents struggle with how to respond to children’s questions if they come up. Discussing questions that may come up for your children prior to the reveal of the separation will be beneficial. Remember that children are typical focused on their "little bubble." They will want to know how this divorce will affect their daily lives. If there is a question you are unsure of how to answer say that you are not sure and will talk more about it with mom/dad and find an answer. Your children will find comfort in seeing the two of you remain civil and working together still.
Dealing with a divorce is never an easy thing, but remaining involved and consciousness of your child's needs during this life transition will be paramount. Take the time to develop your story and remember to practice questions before the conversation. Be honest and remind your children that they will always be loved no matter what!
"Though they may insist otherwise, children with ADHD desperately need and often thrive with reliable daily routines — particularly in the morning and at bedtime. Why? Many children with ADHD exhibit executive function deficits, which means they have a hard time organizing tasks in their minds — making it difficult to figure out how much time it will take to brush their teeth, take a bath, or choose an outfit."
Today's blog discusses strategies to relieve stress and create structure in your home. Establishing routines for homework and other daily tasks can help you and your children deal with the demands of everyday life!
Dr. Liz's Book Review:
Amy Morin’s 13 Things Mentally Strong Parents Don’t Do is a must-read for parents and parents to be. It’s easy to read, well-written, and points out 13 key pillars that parents of our generation have moved away from. This book has created a clear delineation of my role as a parent while helping me separate out the discomforts of parenting that tap into my own insecurities as a person.
My favorite "thing” of the “13 things” that Amy points out is avoiding the victim mentality. It’s one that is easy to fall into for all of us, of all ages and genders, and especially for children and adolescents who are anxious. Instead of becoming subject to circumstances, Amy points out how we, as parents, can shape our circumstances so that they serve us. Instead of feeling badly for ourselves, it’s taking the current situation and turning it into what we want it to be. I just love how she also gives us permission, as parents, to hold our children to higher standards, and to hold them accountable to those standards. It’s not that simple, I know, but if we as parents can model this for our children and use this language in our daily conversations, we will create children who are good problem solvers, leaders, and innovators.
As a Child & Adolescent Psychologist, I can attest to how these strategies and exercises will help you to raise a resilient child who is confident, self-sufficient, and ultimately, happy.
Written by: Chrissy Perone-Sunberg, M.Ed., AAC
Trying to figure out the special education system in your school district can be a full-time job. One thing I learned early on as a parent with a child with special needs is that if you don’t advocate and ask for help, then your child may not receive the accommodations that will make classroom functioning possible. In many cases, by the time that your teacher suspects learning difficulties, critical years of remediation have been lost.
As a Special Education Teacher, Educational Consultant, and Executive Functioning Coach, I’m exposed to the many sides of special education… sometimes all in one day! If I can offer just one piece of advice: DON’T WAIT. If you are noticing that your child is struggling to identify letters and their sounds consistently, is reversing letters and numbers, speak to your child’s teacher. Consult with a Psychologist with specialty in education. Ask questions. Request accommodations based on what you are doing at home that is helpful. Share your child’s struggles at home with homework or meltdowns about going to school if your teacher doesn’t see this.
This will require you to advocate for your child. What does this mean? According to Dictionary.com, advocating is defined as, “to speak or write in favor of; support or urge by argument; recommend publicly.”
Know your child’s strengths, their attention issues and specific learning challenges so that you can communicate their needs effectively to the school and you and his teachers can find the best way to support his needs.
Build a partnership with your child’s Teacher, Principal, School Nurse, and Guidance Counselor. and any other staff members that work with your child. Keep the lines of communication open and e-mail, call or write a note if you a have a question or concern, remember you are part of the team too. Also, take into consideration any positive or negative comments the school has to say about your child and always be curious.
Talk to your child about school. Look over her assignments and quizzes. Ask simple questions like, “What is easy to do each day?” or “Which subject do you wish you had only once a week instead of every day?” Carefully consider their answers. You can also teach your child lingo so that he can self- advocate for himself if he doesn’t understand a particular concept in school.
Teach your child to advocate for his/herself. If your child is in High School or College, she can begin to advocate for herself. Once your child enters into middle school, you can request for your child to participate in IEP meetings and Parent-Teacher meetings so he can hear what you are hearing. You can play a big role in helping him learn how to do this by helping him come up with a plan, role playing and/or assisting with writing an e-mail to his teacher.
Know Your Rights. If your child has a 504 Accommodation Plan or an Individualized Educational Plan (IEP), you must become familiar with the process in order to effectively advocate for your child. (Click here to access NJ Special Education Code).
An IEP is a personalized education plan that takes into account a child’s specific needs and can offer special education programs (e.g., In Class Resource, Out of Class Resource) and related services (e.g., counseling, occupational therapy, speech therapy, physical therapy). Your Child Study Team (CST) is composed of a Learning Disabilities Teacher Consultant (LDTC), Social Worker, and School Psychologist. This is the team that performs your initial evaluations and determines eligibility.
A 504 Accommodation Plan is designed to provide accommodations tostudents with physical or mental impairments in public schools, or publicly funded private schools. These 504 plans legally ensure that students will be treated fairly at school.
Know that you are your child’s best advocate as you know her profile better than anyone, and you know it across all domains (home and school). Schedule follow up meetings and review your child’s progress consistently throughout the school year, perhaps once per month or once every two months.
"Hands down, parenting is the hardest job I’ve ever had in my life. I don’t always know what I’m doing or if I’m saying the right thing. I question my judgment, I question my experience, and I question if other parents are struggling in the ways I am, too. I know I have the theoretical knowledge about how to parent, but when it comes to my own children, my emotions cloud my judgment — so what I should know, I don’t use.
The same probably goes for you too, my fellow parents. When we’re emotionally charged, we can’t see as clearly."
As parents of children with disabilities, we all deal with "burning out", struggling to find balance, or being unsure how to best support our child. In today's blog, Dr. Liz Matheis discusses the shared stressors of parents who have children with disabilities.
Written by: Nicole Filiberti LCSW
It's that time of year again when parents have a chance to sit down with their child's teacher to check in on how the school year has been going thus far. This is crazy to believe, since it seems like just yesterday was the transition from summer to school year and the sun was beaming down on us, and flip flops were appropriate footwear!
The parent teacher conference is a wonderful opportunity for a parent to voice any concerns they may have, to check in on their child's social-emotional well-being in the school environment, and to clear up any confusion about homework policies.
Here are a few tips to help your parent teacher conferences be productive and worthwhile.
1. Preparation is key.
Parent teacher conferences are often time limited, so prepare for the conference by jotting down any concerns or questions you have ahead of time. This will save you time during the conference and will avoid that annoying "oh I forgot to ask about that" thought occurring on your drive home. In addition to your child's academics, consider asking questions regarding your child's socialization and self-advocacy skills.
Let these questions guide your conference so you have the information regarding your child’s main areas of functioning within the classroom
2. Bring documentation
Fill up a folder with work samples, homework assignments, print outs of grading data, etc. Having these documents handy is crucial when discussing progress and achievement, and will help identify areas of weakness for your child. Being able to pinpoint specific skills that your child could use some extra assistance and reinforcement in will help alleviate these struggles. In addition to bringing in documentation, it's also a great idea to bring a notepad or laptop in order to jot down notes of your own. This will help you remember what was discussed and serve as a guide for future reference.
After the conference, sit down with your child and share your child’s areas of strengths and weaknesses. Review any pertinent information and be sure to share the positives that were shared with you. Showing your child that you and the teacher are working together as a team will help strengthen the connection between home and school.
James Leach has a line he uses whenever someone tells him that his son doesn’t look like he has Down’s Syndrome.
“Ah, it’s his off day,” Leach said with a laugh.
He and three other special needs parents discussed how to handle awkward situations like those and other challenges related to special needs parenting during a July 25 webinar hosted by Shield HealthCare, a medical supplies company serving caregivers and people living with medical conditions.
Though parenting was the topic, much of the conversation focused on how to survive being a special needs parent – a topic we Joubert Syndrome parents can always use to learn more about!
Dr Liz Matheis and her team specialize in assisting children and their families with Anxiety, Autism, AD/HD, Learning Disabilities and Behavioral Struggles