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.
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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.
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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.
Photo from: Pexels
Autism Travel Destinations. (n.d.). Retrieved from https://autismtravel.com/
Best vacations for Kids with Autism. (n.d.). Retrieved from https:/.
Written by: Chrissy Perone-Sunberg, M.Ed., AAC
Not all colleges are created equal when it comes to accommodations for students that have learning disabilities. When your student is in high school, they are protected by their IEP Plan. When they make the transition from high school to college, there are a few things you should know. While the protection of Individuals with Disabilities Education Act (IDEA) is no longer available for college students, they are still able to receive appropriate academic accommodations via Section 504 of the Rehabilitation Act and the ADA the Americans with Disabilities Act.
Before your student decides on the right University for him it’s important to do research and find out if the school has a solid program to provide necessary service and accommodations in academics, the residential experience, and campus access.
Every postsecondary institution by law should have a program on campus, but some are more established than others. Some offer a continuum of comprehensive services while others barely offer extended time on tests. Some schools may offer workshops to help students develop study and time management skills. They may have learning specialists with whom students can meet once a week in a one-on-one setting. They may provide more targeted academic advising than students’ regular academic advisor can offer. These services are above what the law requires, so while some schools provide these for free, others incorporate them under a well worth it special fee-for-service program.
There is no federal regulation indicating what type of documentation the college has to accept to prove that your student has a diagnosed learning disability. Some colleges, may require a diagnosis described in a detailed letter from a pediatrician or psychologist or an IEP or 504 plan. Some schools might ask that the student's treating professional complete a form.
Do your research.
Before you set up your tour, I recommend going on the University’s website to find out what type of accommodations are offered. If you are not able to locate the accommodations on-line you can call the department directly. The name may not be obvious. Below are some of the names schools’ call the office that administers accommodations:
Equity Learning Center
Access Academic Center
Access & Equity Learning Support
Diversity Academic Support
Learning Disabilities Special Programs
Learning Resource Center Academic Success Center
Click on the link below and check out some colleges that have well established programs for students with learning disabilities.
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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.
What Does Anxiety Look Like?
Anxiety doesn’t have a look. You can’t see it, but for the person who is anxious (like me), it’s like your mind slows down and speeds up all at the same time. It’s like your thoughts are running and frozen. It’s like your body is moving quickly but it hasn’t gone anywhere.
The stomach acid churning, the shallow breathing, the sweating, the light headedness, the clenched fists, the teeth grinding. It’s not being able to think but processing everything all at once. It’s wanting to hide but not wanting anyone to know anything is wrong.
And we can all relate to the before bed run through of the day that turns into the, “I didn’t do that correctly today. I didn’t say that well. I should have said this instead. I should have done this today. I didn’t do enough. I am not a good enough person.”
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.
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Written by: Psychology@Pepperdine Staff
Psychology@Pepperdine, the online Master's in Applied Behavioral Analysis program from Pepperdine University
"Does your child get distracted easily and need to be repeatedly reminded to complete a simple task? Does their room look like it’s been hit by a tornado and they are constantly misplacing personal items? Do they have emotional outbursts when plans suddenly change?
For parents, many of these behaviors may seem familiar. But many typically developing children are able to improve their self-management skills, or executive functions, as they grow older and take on more responsibility. Some, including children diagnosed with Autism Spectrum Disorder (ASD), attention deficit hyperactivity disorder, dyslexia, traumatic brain injury and other learning disabilities, have a harder time and may face executive function deficits."
Today's blog defines emotional regulation and executive functioning. Furthermore, it discusses how teaching children with special needs emotional self-regulation skills can help them better manage emotional responses, and contains strategies to help your child enhance their emotional regulation skills!
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!
Written by: Dr. Liz Matheis and Featured by: Shield Health Care
"The new school year is upon us! With a over a month under our belts, our children with special needs are beginning to accept that summer is over and this new school year is for real! For our children with dyslexia, school work, homework, and any task that includes reading or writing is tough. Children with dyslexia are relieved during the summer when this demand is decreased significantly, and begin to dread the new school year with all of its perceived difficulties."
Today's blog discusses the signs of learning disabilities such as Dyslexia, what to do if you suspect your child is struggling, and the classroom accommodations that are available to your child!
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.”
Let’s discuss a few places to begin in advocating for your child:
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.
Written by: Dr. Liz Matheis & Featured by: The Mighty
"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: Dr. Liz Matheis & Featured by: The Mighty
Parents with disabilities often feel that their children's disabilities are misunderstood or underestimated. A learning disability, sensory processing disorder, anxiety, ADHD and many others can’t be seen.
As the parent of a child with an invisible disability, you are going need to be an advocate for your child until he/she learns to self-advocate.
In today's blog, Dr. Liz Matheis uses her own experience to discuss invisible disabilities, and how to advocate for your children when they aren't getting the proper support.
Written by: Chuck Soder from Joubert Syndrome & Related Disorders Foundation
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!
Read the full blog below to see the advice from the panelists – Alethea Mshar, Dr. Liz Matheis, Jamie Sumner and James Leach.
You can watch the hour-long webinar for free on Shield HealthCare’s website: www.shieldhealthcare.com/community/grow/2018/06/25/parenting-a-child-with-special-needs-roundtable-webinar/
Dr. Liz Matheis
Dr Liz Matheis and her team specialize in assisting children and their families with Anxiety, Autism, AD/HD, Learning Disabilities and Behavioral Struggles