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Being a parent is a hard job! Being a parent with a special needs child is a hard job! Many days you find there is only so much time in the day and your focus has to be on the fires! What often can fall by the sidelines, to nobody’s fault(!) is the sibling of a special needs child. Siblings of a special needs child can often take on a larger caregiver role in the household, out of pure necessity, or feel a need to be ‘better behaved’ to reduce the demand on their parents.
There is a lot of information out there on things a parent can do to give all their children the attention they need. A few examples include –
Empty tank. Short fuse. Full plate. Bucket overflowing...There are endless ways to describe the feeling of being overwhelmed and stressed!
Adults, kids, teens, and in between, we all handle stress differently. When we feel calm and safe, it’s easier to pause, think things through, and manage challenges. But how do we learn to do that? Sometimes it’s because someone taught us, maybe they talked us through a difficult moment. Other times it’s because we watched how others cope. Those around us can be very powerful models. We may have even seen a t.v. show that provided coaching and guidance through characters and catchy songs (Think magic neighborhood with talking puppets...). For many people though, coping strategies don’t come naturally. They may be “taught” skills like deep breathing or going to a calm space, but in the moment of stress, unexpected changes, or an overwhelming environment, those strategies can be very difficult to access and use, especially if there hasn’t been enough practice to make them feel automatic. That’s where we can step in to help. Practicing or role-playing coping skills during calm moments can help them become more natural and comfortable. Just like we run safety drills, we can do “practice drills” for calming strategies. Turning practice into a game and offering encouragement or small rewards for trying out strategies can strengthen these skills even more. Regular check-ins throughout the day can also make a big difference (Think, “Hey, how are you doing: Thumbs up, down, to the side?”). By noticing early signs of stress or overwhelm, we can encourage our family to use coping tools before the situation escalates, catching a spark before it becomes a fire. Practicing our own strategies when we are calm and comfortable can also help us prepare for those inevitable curve balls our families throw us. In fact, why not take a quick moment now to check in with yourself and practice a coping strategy. Don’t forget a little reward after! Having a child with an Autism diagnosis can leave a family feeling isolated and confined! It can lead to families not exploring the community or having memorable family adventures out of fear of what my child might do! As Autism prevalence has been on the increase, so have resources, specifically in Wisconsin!
One of the wonderful resources that exists are Autism Societies in Wisconsin! The Autism Society of America has 2 technical affiliates and there is an additional affiliate transitioning to become an independent WI resource (still maintaining the same resources as when they were affiliated). Each affiliate services a particular region –
Each affiliate and local chapter provide a number of resources for families affected by Autism, including support groups (in person and/or virtual) for parents, sensory/autism friendly events in various locations (many free for members!), resources for neurotypical siblings, larger resource guides, volunteer opportunities, and a number of programs that are chapter specific! If you are new to the Autism world or been around the block, check out your local chapter! There are some amazing resources right at your fingertips! It’s that time of year again–the kids (and adults!) go back to school! For some of us, this is a blessing but for others, it’s a harsh reality of facing advocacy work, navigating meetings when we feel surrounded by professionals and the unknown of how our child will engage in learning. Many of our children cannot tell us how they feel about going back to school. Many of our children cannot tell us how they like their new classroom or teacher or friends. They just know it’s different and change is hard for all of us.
We thought we would help get ready for school reality with some preparation ideas and a checklist to set the occasion for back to school success! 1. Review your child’s IEP or 504 Plan
Putting out fires is a regular occurrence for parents and caregivers of those with disabilities! There is always something to deal with and it seems like new things are always coming up! With everything that the family is dealing with, isolation can be common. Feeling like you have nobody to talk to who understands or who can give you sound advice is a frequent feeling!
With the boom of technology and social media, there are many options out there that can help you not to feel so alone, without even leaving your home!
Many families avoid travel and flying, as just leaving home with your child can be a daunting process, but vacationing and flying, not in the realm of possibility! While traveling with any child is never going to be simple, here are some tips to ease the process!
Pre-Flight Planning
Before you hit the road, plan ahead -
For the past twelve years, I’ve sent kiddos off to school. It has been a mixed blessing; there is part of me that is ecstatic to have the school routine back! AHHHHH…for 35 hours each week, my children are engaged and I can put away my cruise director hat for nine blissful months.
Then, I quickly remember that when the cruise director hat is on the shelf, the advocate hat may have to be dusted off! It makes me wonder how our kiddos feel when they go back to school? Anxious? Stressed? Excited? Confused? Sad? For many of our kiddos, these emotions present the same! They may engage in dysregulated behavior, have increased self-stimulatory or self-injurious behavior, may have more frequent outbursts and regressed sleep issues, just to name a few. As parents (and advocates!), there is much we can do to prepare our kiddos for this transition. We can also prepare teachers and professionals to know our children before they ever walk through the front door! Mostly, we can choose to be grateful for IDEA (Individuals with Disabilities Education Act) which allows our children to attend school and have support! Here are a few ideas to consider which may set the occasion for a successful back to school transition! ✅ A visual monthly calendar with home and school icons can show our students when school is going to start! This visual tool can be used throughout the year to communicate to our students when school is out (including weekends and holidays). ✅ Create an “All About Me” profile about your student to share with the teacher and other professionals. Update it at the end of the summer and include things like the student’s likes/dislikes, things that might make the student happy or upset and important things for the teacher or professional to know! ✅ For students with executive functioning and organizational difficulties, consider color coding academics and aligning the colors by binders, notebooks and folders. For example, green is for science; create a green binder, green spiral notebook and green folder so the student can quickly grab the correct supplies needed for the class! We used green for science, blue for history, black for comm arts/ELA, red for math, etc. We started this in sixth grade and my son (attending college this fall!) still uses this same color system to this day! ✅ Start the year off positively with the teacher (both special ed and each regular education teacher). A small gift and a thank you note in advance of the year speaks volumes to your grateful heart for their hard work! ✅ Advocate for needs in person or over the phone; avoid email! Your care and concern comes through so much more through face-to-face/phone interactions and can get lost in the written text. Remember to avoid “why” questions which can evoke defensiveness from the listener! ✅ You are not alone! There are advocacy options to assist you if you are struggling with IEP or school-related issues. Consider Wisconsin FACETS, Wisconsin Coalition for Advocacy, Disability Rights Wisconsin and CESA. Finally, take a deep breath and commit to a great year! You got this! Close your eyes and picture all of the things that you have done today so far. Now picture all of the things that you have to do. Some of these things might be very routine, where you can almost complete them with your eyes closed (although this is not recommended). Some of these tasks are less routine than others, and you need a bit more support to understand what needs to be done and in what order. You may even need some instruction on how to do a task. Luckily, we have access to step-by-step instructions, online tutorials, and friends and family to reach out to! Having a visual reminder or prompt of the ins and outs of your daily tasks and routines can be tremendously useful, helping you stay organized and feel in control. Now picture your loved one and all of the things they must accomplish on a daily basis. Think of the things that they can do independently, from start to finish. Think of the tasks during which you may need to provide more support. What does your support look like? Are you giving verbal reminders? Do you provide hand-over-hand assistance? Do you point to the next step? Maybe you feel like you just need to get your loved one from point A to point B in a timely manner and don’t feel like there is enough time in the day to allow for teaching independence with certain routines. No doubt, this can all be very overwhelming and frustrating for you and your loved one. A visual schedule can not only show your loved one what they need to do to complete a task, it can also help them understand a clear beginning, middle, and end to a daily routine. Having an understanding of when the less preferred tasks will be done and when something more preferred will happen can reduce anxiety and increase task “buy in.” Furthermore, a visual schedule can offer guidance without reliance on verbal or physical cues from others, thus setting the tone for greater independence.
A visual schedule can be individualized to meet your loved ones needs and abilities. It may be electronic (there’s an app for that), a written list, include pictures or photos, change according to the task at hand, or outline a set order of events. It can include moveable icons, places to put icons when the task is done, allow for flexibility and choices… the options are endless!
Through Unpaid Caregiver Training Services, FIS can help provide guidance and support on determining where and how to start with teaching your loved one how to live more independently, transition from task to task more smoothly, and celebrate the momentum that builds through accomplishment. Sustainable strategies like visual schedules are just one of the many tools that can help your loved one conquer a task and move on to what’s next! |
