The parent of one of my clients recently returned from a conference related to her youngest child’s genetic disorder, and she told me that the presentation on helping the siblings of special needs kids really only offered one niblet of advice: “Try to give each sibling 10 minutes a day of “just us” time.”
My shoulders, and my heart, fell. Telling exhausted and worried parents that they need to find more time in their day, every day, isn’t fair. This mom could have used so many more specific strategies. She didn’t need another way to feel inadequate to the challenge. When you have a special needs child, you don’t have extra time. Some days you aren’t sure you will be able to shower and shampoo. Even if you could carve out some time by delegating and hiring help, the truth is that living with constant worry about the present and the future, running chronically short on sleep, and perhaps still recovering from a NICU nightmare…this doesn’t lend itself to stellar time management.
There are things that really do help. Among them are getting the right kind of assistance and support, sharing the knowledge you receive from specialists, and handling everybody’s feelings with compassion (including self-compassion) and honesty. Occupational therapists are out there helping families deal with life, since we have a solid background in the science of occupational demands and the psychological responses to illness, injury and trauma. We aren’t psychotherapists, but we study the science of healthy life routines and behaviors. We also spend a lot of time learning what special needs kids need to thrive, and this includes supporting the siblings and parents of our clients.
Here are some of the things I wish that the presenters had suggested:
Ask your child’s therapists to train more of your family members and caregivers. This means the partner that isn’t the primary caregiver for a special needs child, but it also could be the grandparent or the babysitter that is the backup emergency caregiver. There are parents who feel they can never take a break because a half-spa day would mean that no one knows how to prevent their child from falling down the steps or how to know when a child is going in the direction of a meltdown that will derail the day. If you have a medically fragile child, more people need to know how to keep them safe and healthy. Your child’s therapists are skilled in providing training in their area of specialization. They may not offer it to your other family members unless you ask for it to be done. This is an investment in your peace of mind. Make it happen.
Find out if your child’s siblings can enter a therapy session and learn more about how to help or encourage their special needs sibling. Therapists can teach your child’s siblings, and because they are seen as authorities and not parents, this can work well to foster understanding and interest. Even preschool kids can learn why the baby isn’t playing with them( but she is watching) and that means “I like you”. Your therapists are pediatric specialists and are good at helping children of all ages, even if your social needs child is an infant.
Learn methods to spread your warmth and concern without promising time commitments you may not be able to keep. Something so simple (and explained in more detail in my new book below) is to talk with your child’s siblings about your feelings of anticipation before some fun event, even if it is reading a chapter in Harry Potter. Telling them, days ahead, that you can’t wait to be with them can feel so good. Later, you can remind them how much fun you had. Don’t require them to reciprocate. You are speaking about your feelings, and if they brush it off then don’t take it personally. Tweens especially struggle with how to respond. They still need to hear your warmth.
Express your frustrations honestly, but mindfully, to your child’s siblings. You will both feel better for it. You don’t have to wail and keen, and in fact I would discourage that. You can do that with your partner or your counselor. But your other children need to know that feeling less than blissfully grateful for their special needs sibling is normal and not shameful. When some feelings are perceived as unacceptable, they grow in importance and sprout little behavioral problems of their own. Start by speaking about how tired you are. It is honest and it is probably already visible. Mention that you feel both things; love and frustration. You have to adjust for your other children’s age and emotional tolerance, but I promise you: this is going to really help.
Ask for help. And accept it when it is offered. Some people don’t think they need help, and some don’t think they deserve it. Some think that it will be seen as weakness or laziness. Some ask for help and get a casserole instead of babysitting. Some get advice instead of a casserole. And some turn down help to avoid feeling as tired and frightened as they really feel deep inside. Think carefully about how and why you don’t have or accept help, and try doing what doesn’t feel natural or easy. It could be the best move you make this week.
Reconsider the amount of therapy and tutoring you are doing. I know; what therapist thinks you can overdo their own treatment? Me. Overscheduling therapies can backfire when you, your special needs child, and the rest of your family suffer from the demands. The time demands, the loss of participation in real life fun like hayrides and playgrounds, etc. The downtime that any normal person needs and so few parents and special needs kids get. That affects siblings too, in lost time with parents and exhausted parents trying to wedge “me time” into a free moment.
Make choices about what your priorities are, but allow yourself to have a priority that is not all about your child. For example, you may have to accept that your house isn’t going to be spotless, and that you may be buying rather than making most of the holiday cookies. But if making a few batches of a precious family recipe (my best friend from college makes her Scottish grandmother’s recipe for fruit squares) will make you feel like a million bucks, then go ahead. Yes, life with a special needs child is different from what you expected. But you get to have some things from your previous life that bring joy!
I am so excited to report that my newest e-book is finally done!
The JointSmart Child: Living and Thriving With Hypermobility Volume One: The Early Years is designed to empower the parents of hypermobile kids ages 0-5. There are chapters on picking the right high chair, toys, even pajamas! One section is just on improving communication with your family (including siblings), teachers, therapists and even doctors. No other book answers questions that parents have about finding good eating utensils and how to navigate playdates and social events more successfully.
The use of binaural headphones allows the ears to hear the full range of sound with as little interference or absorption from the environment. It is important that the left and right ear are hearing the sounds separately. The echo-y sound? What you are hearing is the BBT; binaural beat technology.
It isn’t new. BBT has been used and researched since the 70’s. It is out there in many forms; you can even find it on YouTube. There are enough studies done to prove that this technology has real effects on alertness, attention and mood. It makes sense that therapists would like to use it to help kids with self-regulation issues.
BBT is helpful for learning and self-regulation, but only if you know what brainwave state you want, and why you want it. And that is where therapists can help.
But which one to use? I only use Quickshifts in my therapy sessions. Why do I prefer Quickshifts to deliver BBT?
Quickshifts entrain an alpha brainwave state. This state is associated with calm focus and, wait for it, interoception. Yup, the biggest new word in OT is interception, and there are some excellent studies done by neuropsych researchers that indicate that alpha brainwave states increase interoception. Yeah! Interoception is the ability to perceive internal states, and this includes basic physiological states such as fatigue, hunger, and the need to eliminate. So many of our clients struggle with knowing what they feel. We can help.
Alpha brainwave states are theorized to act as a gating mechanism for anxiety, and anxiety isn’t a great state for kids with ASD, SPD, or, really, any of us.
The music used in Quickshifts is very carefully designed to enhance specific functional states, and every OT is all about function. We don’t want just relaxation, we want engagement in life. There are albums for attention, for movement, and for regulation. They all use BBT. At any particular time, one functional goal will predominate. I don’t need to induce a meditative state in a child that is working on handwriting. I need calm focus and movement control.
The avoidance of pure tones means I don’t have to worry about seizure activity in most kids. If a child has frequent seizures, I can be confident that I am not increasing them.
The choice of instrumentation on Quickshifts albums is often more grounding than other BBT choices. I want kids to feel grounded, not floating on a cloud. That state makes it harder to speak, move, etc. Being jolted into a high level of engagement without grounding isn’t great either. Remember: OT is all about functioning. That happens at that “just right” point of arousal.
There is a progression of instrumentation and rhythm on many Quickshift albums that guides the brain into more environmental awareness and postural activation, but it is done gently. Getting to an alpha state is a goal, but improving functional performance with less risk of overload is most important to me. I have to give kids a chance to leave our session in a good place.
I regularly field questions about this problem from the parents of children I treat. If your 8 to 24-month old is fussy during diaper changes and you know it isn’t from diaper rash, keep reading. I have some information and ideas for you.
Parents of kids with sensory processing issues or developmental delays often assume that this is the source of their child’s diaper drama. Parents who lack confidence or parents who spend a lot of time online with “Dr. Google” think that it could be sign of autism or of poor attachment.
At least, not usually.
If your young child is suddenly giving you the business, even though they really need a diaper change, there are a few things to think about before you run to a developmental pediatrician (or any pediatrician):
Your child may have been busy exploring, and they are unhappy that they were interrupted with a task they find boring. Getting a fresh diaper isn’t much fun after those first few months of face-gazing and smiles. Once a child can really play, they have better things to do. Parents can be surprised that their gurgling infant that loved diaper changes is now resisting, or even fighting, to get off the changing table.
If your child is one of the 15-20% of kids that Dr. Harvey Karp identifies as having a “spirited” temperament, then you are going to get a strong reaction to almost any action they didn’t initiate. Bedtimes, leaving to go to the park, leaving the park to go home, etc. Spirited kids are going to give you oversized reactions in both directions; super happy, super sad, super angry.
Kids with limited receptive language aren’t sure exactly what is going on when you pick them up. Receptive language means understanding the words another person is using. Your child doesn’t have to be delayed; they could simply not have enough language skills to understand what you are saying.
Your child has decided to use diapering as their “line in the sand” to express their independence and test your limits. Testing limits is normal, and I believe that nature intended this to start early. By the time parents are experiencing limit testing with a teen, they have been practicing for a while. Young children that feel that they are being controlled will test more and with more energy. This doesn’t mean that their parents are actually more controlling. Perception is reality, and if a child feels micro-managed, then they react whether or not they are indeed highly controlled. This could happen when they spend a lot of time with babysitters instead of parents, or if they have had many recent changes in caregivers, new sibling, new home, etc.
What works to reduce diaper drama?
Use routines to improve language comprehension and manage expectations. Kids that get a regular diaper check/change know what you are doing and where they are going.
Shorten your phrases and use the same words for the same events. See above.
Try not to over-react to an overreaction. Spirited kids don’t need more fuel for the fire, and neither do tired, sick, or hungry children.
Give your child more chances to control other situations in their life. Manufacture the situations if you have to. This means that they get to decide of the doll goes in the cradle or the car, or if the blue car goes down the ramp first, or if it is the red car that leads. Dr. Karp’s “give it in fantasy” strategies Give (Some of) Your Power Away To Your Defiant Toddler And Create Calmness and all of his positive “time-ins” are excellent ideas to build a child’s sense of fairness and autonomy.
Offer the 8-24 month old child something interesting to hold and look at during the diaper change. It could be a new soft toy, but it might be better to give them a tiny collapsible colander to examine. The novelty factor should buy you enough time to do the deed. Remember to change it up regularly. They need to learn to expect that this could be more fun than drama.
Older kids with the language skills to understand the negotiation could be asked “Do you want your diaper change NOW or in one minute?” It doesn’t have to be 60 seconds later. The idea is that you have given them a choice. You have to stick to the agreement. If they still balk after the minute is up, don’t use this again right away. You will be teaching them that their protests work to avoid following your directions. Oops.
The truth is that most children know that you are going to change their diaper regardless of their protests, and they can handle it if you help them a little bit.
Hypermobility is a symptom that affects almost every aspect of a family’s life. Unlike autism or cerebral palsy, online resources for parents are so limited and generic that it was obvious that what was needed was solid practical information using everyday language. Being empowered starts with knowledge and confidence.
The result? My new e-book: The JointSmart Child: Living and Thriving With Hypermobility. Volume One: The Early Years.
What makes this book unique?
This manual explains how and why joint instability creates challenges in the simplest tasks of everyday life.
The sensory and behavioral consequences of hypermobility aren’t ignored; they are fully examined, and strategies to manage them are discussed in detail.
Busy parents can quickly spot the chapter that answers their questions by reading the short summaries at the beginning and end of each chapter.
This book emphasizes practical solutions over theories and medical jargon.
Parents learn how to create greater safety at home and in the community.
The appendices are forms that parents can use to improve communication with babysitters, family, teachers and doctors.
Who should read this book?
Parents of hypermobile children ages 0-6, or children functioning in this developmental range.
Therapists looking for new ideas for treatment or home programs.
New therapists, or therapists who are entering pediatrics from another area of practice.
Special educators, and educators that have hypermobile children mainstreamed into their classroom.
Looking for a preview? Here is a sample from Chapter Three: Positioning and Seating:
Some Basic Principles of Positioning:
Therapists learn the basics of positioning in school, and take advanced certification courses to be able to evaluate and prescribe equipment for their clients. Parents can learn the basics too, and I feel strongly that it is essential to impart at least some of this information to every caregiver I meet. A child’s therapists can help parents learn to use the equipment they have and help them select new equipment for their home. The following principle are the easiest and most important principles of positioning for parents to learn:
The simplest rule I teach is “If it looks bad, it probably IS bad.” Even without knowing the principles of positioning, or knowing what to do to fix things, parents can see that their child looks awkward or unsteady. Once they recognize that their child isn’t in a stable or aligned position, they can try to improve the situation. If they don’t know what to do, they can ask their child’s therapist for their professional advice.
The visual target is to achieve symmetrical alignment: a position in which a straight line is drawn through the center of a child”s face, down thorough the center of their chest and through the center of their pelvis. Another visual target is to see that the natural curves of the spine (based on age) are supported. Children will move out of alignment of course, but they should start form this symmetrical position. Good movements occurs around this centered position.
Good positioning allows a child a balance of support and mobility. Adults need to provide enough support, but also want to allow as much independent movement as possible.
The beginning of positioning is to achieve a stable pelvis. Without a stable pelvis, stability at the feet, shoulders and head will be more difficult to achieve. This can be accomplished by a combination of a waist or seatbelt, a cushion, and placing a child’s feet flat on a stable surface.
Anticipate the effects of activity and fatigue on positioning. A child’s posture will shift as they move around in a chair, and this will make it harder for them to maintain a stable position.
Once a child is positioned as well as possible, monitor and adjust their position as needed. Children aren’t crockpots; it isn’t possible to “set it and forget it.” A child that is leaning too far to the side or too far forward, or whose hips have slid forward toward the front of the seat, isn’t necessarily tired. They may simple need repositioning.
Equipment needs can change over time, even if a child is in a therapeutic seating system. Children row physically and develop new skills that create new positioning needs. If a child is unable to achieve a reasonable level of postural stability, they may need adjustments or new equipment. This isn’t a failure; positioning hypermobile children is a fluid experience.
The JointSmart Child: Living and Thriving With Hypermobility Volume One: The Early Years is now available on Amazon.com
For the week of 10/26/19, it is on sale, and when bought as a bundle with The Practical Guide to Toilet Training Your Child With Low Muscle Tone, it is a great deal and a complete resource for the early years!
Already bought the book? Please share your comments and suggestions for the next two books! Volume Two will address the challenges of raising the school-aged child, and Volume Three focuses on the tween, teen, and young adult with hypermobility!
My new e-book, The JointSmart Child: Living and Thriving With Hypermobility, Volume I, is just about ready to launch. One of the book’s major themes is that safety awareness is something that parents need to actively teach hypermobile young children. Of course, physical and occupational therapists need to educate their parents first. And they shouldn’t wait until things go off the rails to do so.
Hypermobile kids end up falling, tripping, and dropping things so often that most therapists have the “safety talk” with their parents on a regular basis. What they don’t speak about as often are the long-term physical, emotional and social impacts of those injuries.
Yes, injuries have more than immediate physical effects on hypermobile kids. Here is how this plays out:
The loss of mobility or function after an injury creates more dependency in a little person who is either striving for freedom or unsure that they want to be independent. Needing to be carried, dressed or assisted with toileting when they were previously independent can alter a child’s motivation to the point where they may lose their enthusiasm for autonomy. A child can decide that they would rather use the stroller than walk around the zoo or the mall. They may avoid activities where they were injured, or fear going to therapy sessions.
A parent’s fear of a repeated injury can be perceived by a child as a message that the world is not a safe place, or that they aren’t capable in the world. Instilling anxiety in a young child accidentally is all too easy. A fearful look or a gasp may be all it takes. Children look to adults to tell them about the world, and they don’t always parse our responses. There is a name for fear of movement, whether it is fear of falling, pain or injury: kineseophobia. This is rarely discussed, but the real-life impact can be significant.
Repeated injuries produce cumulative damage. Even without a genetic connective tissue disorder such as Ehlers-Danlos syndrome, the ligaments, tendons, skin and joint capsules of hypermobile children don’t bounce back perfectly from repeated damage. In fact, a cascade of problems can result. Greaster instability in one area can create spasm and more force on another region. Increased use of one limb can produce an overuse injury in the originally non-injured limb. The choice to move less or restrict a child’s activity level can produce unwanted sedentary behavior such as a demand for more screen time or overeating.
Being seen as “clumsy” or “careless” rather than hypermobile can affect a child’s self-image long after childhood is over. Hypermobile kids grow up, but they don’t easily forget the names they were called or how they were described by others. With or without a diagnosis, children are aware of how other people view them. The exasperated look on a parent’s face when a child lands on the pavement isn’t ignored even if nothing is said.
In my new book, I provide parents with a roadmap for daily life that supports healthy movement and ADL independence while weaving in safety awareness. Hypermobility has wide-reaching affects on young children, but it doesn’t have to be one major problem after another. Practical strategies, combined with more understanding of the condition, regardless of the diagnosis, can make life joyful and full for every child!
I wrote a post about the common complications seen with long-term neonatal medical issues The Subtle Ways Chronic Medical Care Affects Infant and Toddler Development, but the rest of the family isn’t immune to trauma reactions. A difficult pregnancy or delivery, the shock of a unexpected genetic disorder diagnosis, or the crises that arise in the NICU all weigh heavily on parents too.
Most pediatric therapists aren’t seeing children in the NICU or the hospital. We are in the home, the clinic or the school. Acute medical issues are few and far between in these settings. But the effects of trauma can continue to color treatment long after a child is medically stable. What looks like a personality problem or a poor fit between therapist and a family can really be PTSD that hasn’t been acknowledged and treated. Many parents are so focused on therapy for their child that they won’t even consider that they need to help themselves as well. This should change.
I recently read a research study comparing the PTSD symptoms of parents with rare disorders like Ehlers-Danlos, PRader-Willi, and autism. The parents whose children were aggressive or injured themselves, or had serious accidental injuries scored strongly on a standard PTSD scale. If you have ever spent time with a child with these behaviors and wondered how their family handled it, well, it leaves emotional as well as physical scars.
The following are only a few of the common scenarios that can be the result of untreated parental PTSD:
Parents who ask for a therapist’s guidance and then question the recommendations repeatedly. When the medical picture changes rapidly in a crisis, and multiple doctors give conflicting recommendations or predictions, parents become gun-shy about anything any professional tells them later on. Even though their experience with therapists may have been positive, the stain spreads around.
Families that withhold information from therapists, and may even resist open communication between team members. See #1. “Splitting” is a common response from people who are convinced that controlling other people protects them in some way. It also sustains drama and focuses attention away from issues that are painful, such as the lack of a child’s progress or the final diagnosis.
Signs of common illnesses create high levels of anxiety and agitation. Parents that have witnessed resuscitation and emergency surgeries can become absolutely distraught over a URI. The memory of a child gasping for breath or being unresponsive is so painful that a common cold brings it all back.
Parents who are developing addictions or whose addictions are increasing in severity. A mother who is anorexic, a father who is using prescription drugs or alcohol more frequently, or a parent who is spending more time online than is healthy may be responding to their pain in ways that are dangerous for them and their family.
Parents are essential allies in therapy, and it is important to support them as well as our pediatric patients. Some kind and compassionate words can go a long way, and even sharing this post with a parent may help them think about finding support to address the pain that they are holding onto, long after they have left the hospital.
After writing my first e-book, The Practical Guide to Toilet Training Your Child With Low Muscle Tone: Potty Training Help Has Arrived! ,I continue to think of additional issues that can complicate (but not derail) training. One of these issues is a receptive language delay. This is when a child’s ability to comprehend language is not age appropriate. It may be accompanied by a delay in expressive language as well. I don’t think it is a hard stop to training, but there are some strategies that improve the experience. Not all of them are obvious.
When a child is unable to easily and quickly understand what you are saying during toilet training, you will need to do a few things differently:
Expect to need established routines to support your verbal instruction. This can include very regular trips to the potty rather than happening randomly. Routines are essential for all children, but these kids really need them to shore up the language you are using. Think about buying something in another language. The routine or presenting the item, finding out the fee, offering payment and leaving with your item helps you get over the fact that you have forgotten most of your high school level French. When they always sit on the potty right before a specific show, they know why and what you are saying more easily because they know the context.
Use clear and consistent gestures and facial expressions as additional messaging while teaching and encouraging performance. Gestures and facial expressions clarify your words and help kids respond quickly. If they have too many accidents because they were confused, they could decide to stop cooperating.
Monitor your language complexity, and consider simplifying it for ease of comprehension under stress. As in the Fast Food Rule’s use of Toddler-ese, shorten phrases and emphasize important words. This is not the time to lengthen your statements. Repeat if necessary, but don’t elaborate. Read Taming Toddler Tantrums Using Sympathetic Reframing for more details on TFFR.
Assume that you will need to be more enthusiastic, more positive, and spend more time on training in general. Your child is probably already someone with a short fuse. Struggling to understand what people are saying makes that easy. Now you are trying to teach a new skill, possibly one that they aren’t 100% excited to learn. That doesn’t mean never teach it. It means have a good plan, with lots of optimism and patience on your part.