Spring is in the air, and that means summer is fast approaching! Summertime is a happy time for many, with kids out of school, beautiful weather, family vacations to enjoy, and a more leisurely pace to everyday life. For parents, it can also be a bit stressful because we’re often the ones planning those fun family trips and summer camps, hauling everyone to the pool, and keeping everyone fed and entertained. And if you’re the parent of a child with special needs, you may be even more busy in the summertime with all the additional appointments and everyday responsibilities that go hand in hand with caring for your child.
It’s super important that you as a parent remember to try and plan for small breaks for yourself this summer. It’s easy to get so caught up in the day to day and all the activities and things you’ve got going on for your family that you forget about yourself, but you can’t pour from an empty cup. It’s very likely that you have a few family members or close friends that you could trust to care for your loved one with special needs, even if it’s just for a couple hours while you take some time for yourself. Maybe you never ask because you don’t know what they might say, but the truth is that more likely than not, those people want to help, they just aren’t sure how. If you ask them, that gives them a chance to say yes and finally have the opportunity to help in a way that they weren’t certain of before.
Taking that time for yourself can be so refreshing, and it lets you enjoy your summertime too, rather than just planning and going and doing constantly like we as parents often do to ensure that everyone else has a fun summer. Even if it’s just a couple hours free every other week, it could mean a drastic reduction in your stress level this summer, giving you a chance to relax and replenish. Who knows, your special needs loved one may also enjoy the opportunity to hang out with someone new, too! Parents and kids spend so much time together, especially in the summer, and while that’s valuable family time that shouldn’t be taken for granted, it can also end up being a little too much time together. A little time apart here and there this summer is typically healthy for most families.
Whatever your summer looks like for you and your family, we encourage you to take some time for yourself. Being a parent is hard work, and we applaud you for everything you do. So put aside that annoying mom or dad guilt, and make some plans for yourself this summer! You’ll be doing both yourself and your family a favor by giving yourself time to relax so that you can be the best parent you can be for your family, especially your loved one with special needs. Enjoy your summertime, and get busy making those plans to relax and rejuvenate!
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Remember that you as their parent are their number one advocate. As parents, I think we sometimes underestimate the effect we have on our children, but the reality is that the way we react to our child’s accomplishments can have such a huge impact on the way they perceive themselves. Showering your child with genuine and enthusiastic praise when they accomplish something new helps them feel special. It’s also a valuable teaching moment that shows them that they have every right to be proud of themselves, and it helps them see how their hard work has paid off. While milestones may not look the way you once expected or hoped, it’s vital to focus less on what they cannot do and more on what they can do. How you celebrate your child will likely look different from one family to the next. You know your child best, of course, so it’s important to make sure you honor their achievements in a way that suits them and your family best.
Celebrating your child’s milestones can help you appreciate the moment and focus on their achievements. Many people may take for granted that a 14 year old should feed himself, but if your special needs 14 year old feeds himself for the very first time, that’s a really big deal and should absolutely be celebrated! It’s easy to fall into the trap of fixating on what your child can’t do – we’ve all been there – but try not to let that overshadow all the great things they can do and that they (and you) have worked so very hard to accomplish! As parents, we all want our child to be as independent as they can possibly be, so every step towards greater independence is a step in the right direction – celebrate those steps!
]]>Lots of families choose to travel during the holidays, some to visit family and friends and some to get away for a vacation. AAA has estimated that a whopping 109 million Americans will travel during this year’s holiday season. If you and your family are planning a trip this Christmas, it’s wise to plan ahead, especially when traveling with a child with special needs. We’ve compiled a list of some handy tips and suggestions to help you plan a smooth trip so that your family has a holiday that is merry and bright.
First, figure out how you’re traveling – by car or airplane, for example – and work out all the details related to your chosen mode of transportation. If you’re traveling by air, most major airlines have some kind of accessibility services with trained employees who understand and can help those traveling with a family member with a disability. There is also a service called TSA Cares. You can reach out to them to explain your situation and your child’s specific needs, and they can help you prepare for when you go through security at the airport. Make sure you let them know about things your family may need, like extra time going through security or loading the plane, any devices your child may use, such as a wheelchair or adaptive stroller. If you have someone picking you up from the airport or if you’re renting a car, make sure you’ve planned ahead to ensure your child can ride safely in the vehicle.
When traveling, always allow for extra time – your family may need a little extra time navigating a busy airport, or even some extra time when traveling by car to allow for those unexpected bathroom breaks. Try to ensure you’re not asking too much of your child as well. If they wouldn’t typically tolerate traveling all day in the car, don’t expect them to be able to travel all day in the car for holiday travel, either. Take breaks when needed. Personally, I’d rather take a bit more time getting to my destination with a calm and happy family than to get their quicker but have an upset and uncomfortable child.
While you’re mapping out your trip, it can be really helpful to make a note of nearby hospitals and other healthcare centers at your destination, especially if you have a child with medical needs. You may also wish to touch base with your health insurance provider ahead of time as well, to make sure you are as prepared as possible in the event someone in your family needs medical attention while away from home. If your child takes medications, it can be a good idea to carry a typed list of your child’s medications from their doctor and keep all medications in a clear plastic bag. Also, make sure you have plenty of your child’s medications available for your trip, or get refills ahead of time if needed.
When traveling, as in most other situations, good communication is key. We recommend reaching out well ahead of time to whomever you may be staying with during your trip, whether you’re staying with family or at a hotel. You’ll want to ensure they know your child’s unique needs and help them plan ahead so that everyone can be appropriately accommodated and comfortable during your stay. While you’re packing for your trip, go ahead and think about any possible scenarios you and your family may find yourself in, and pack whatever you think you may need. While we realize most people want to pack as lightly as possible, when traveling with a special needs child, you don’t want to be caught off guard either.
If you’re staying overnight during your holiday travel, also remember to consider how your child will sleep. If your child uses a safety bed at home, they may not be able to sleep in a typical bed while traveling. A travel bed such as the Safe Place Travel Bed is an excellent option for keeping your child safe while sleeping during your holiday travels. The Safe Place Travel Bed is an inflatable safety bed designed for special needs children. It attaches securely to any stationary bed, and it will give you peace of mind, knowing that your child can sleep safely and comfortably wherever you may go.
Lastly, we have found that it can be really helpful to the whole family if you try your best to stay as close as possible to your normal daily routine. Traveling for the holidays will inevitably throw off your routine to some extent, but if you can try to incorporate some of your family’s usual day-to-day procedures into your travel, many children will appreciate the sense of normalcy and stability that can provide. While it can be tempting to try to see all the sights, do as much as possible, and make the most of your holiday travel, we also recommend that the family not overdo it. You know your child best, of course, but remember that even grownups can get travel-weary and overstimulated. Wherever you go this holiday season and whatever you choose to do, we hope that you and yours have a wonderful trip and that you have a very merry Christmas and a happy New Year!
First things first, you’ll definitely want to create your gift ideas list with your specific special needs loved one in mind. For example, if they have sensory issues, you may want to consider recommending to your friends and family that they look for toys or gadgets that do not have any bright lights or loud noises. For teenagers and adults with special needs, you may wish to remind the gift-buyer that they like age-appropriate things; they may be interested in items such as electronics that they have seen others enjoying, they may just need some modifications to suit their needs. Keep in mind gross and fine motor skill abilities, and help your friends and family look for toys or gifts that are user-friendly for the recipient.
We also recommend guiding your friends and family to look for adaptive toys designed for children with special needs rather than buying standard toys designed for younger children. A teenager receiving what they see as a “baby toy” can be a bit embarrassing. When in doubt, check out the plethora of websites out there devoted to recommending and selling toys, gadgets, and even electronic devices that have been designed specifically for those with different needs and abilities. Simply doing an internet search for “gifts for children with special needs” yields many websites and articles to give a good starting point. It may be helpful to also provide the gift-giver with your child’s specific diagnosis – searching for “toys for ten year old with cerebral palsy” will likely provide the gift-giver with better, more appropriate suggestions than vague search terms.
While giving cash may seem like an easy answer for the gift-giver, it can come off as a bit impersonal if the gift-giver hands everyone else a personalized, thoughtful gift and then gives the person with special needs an envelope with cash. If the buyer would rather not purchase a gift, we suggest letting them know what your child likes to do so that they could instead get them a gift card or take them on a fun outing. For example, if your child loves going to the movies, they could then get them tickets or take them to the movies. You may also wish to let others know what your child needs, like clothes. While some children may roll their eyes to receive clothes or pajamas, some may not mind, and older kids and teenagers may actually prefer to receive such a gift.
You know your child best and can give recommendations accordingly. Whatever you decide to suggest to your friends and family, we hope that your loved one with special needs feels as special and as loved as we know they are, and that you all have a wonderful holiday season.
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As it turns out, there are a number of things to consider when thinking about ways to maintain your relationship with your spouse and help find your marital bliss. Before we talk about the romance, though, let’s focus on practical things that all marriages need to remember – things like initiating and maintaining an open, clear line of communication. Communication, or lack thereof, can be the key to making or breaking any relationship. Also, be honest when you’re struggling, and try to always share the load. Encourage one another, and be mindful to extend grace when one or both of you are having a hard time. Consider setting aside specific times each day or each week to discuss the kids and the household so that your conversations aren’t always revolving around these matters.
Okay, now that we’ve reviewed practical marriage tips, let’s talk about romance and how to save or reinvigorate that spark you once felt for one another. We’ve said it before and we’ll say it again – you have to take time out for just the two of you. It’s so important to have alone time with just you and your spouse, however that may look. When you have such busy lives to lead and so many responsibilities to take care of, it can become so easy to put off that date night, delay that anniversary trip, give up on having quiet dinners without the kids in tow. We cannot emphasize enough how vital it is, though, to set aside that special time for just the two of you. Sometimes it can be hard, and you will likely have to be very intentional about it, but go ahead and schedule that dinner, that trip, that alone time. It will be so healthy for your relationship.
Once you have that alone time planned, you may find that you don’t know what to do with yourselves anymore. It’s common to forget how to be, just the two of you. That’s when you have to think back and try to remember how you once were together. Try to recall the person you fell in love with and all the things you used to love about them. You’re both still there, you just may have to coax one another back out a bit. It can be very helpful to try and plan new activities – something fun and exciting that you can discover together. New experiences help to create and solidify bonds, and doing something unfamiliar and maybe even a little out of your comfort zones can often make you feel like a new couple again, like the way you were in the beginning.
Speaking of planning activities, you may also want to schedule or plan your “alone time” – you know, your special bedroom time (wink). It may seem awkward or unromantic at first, but it’s far better to plan your special time together than to get so busy that you don’t have it at all. Some couples therapists recommend even going so far as to schedule a particular night every week so that you both know when to expect to have some fun, and that way, you can look forward to it together. You can also try flirting with your spouse, particularly if you know your “alone time” is coming up. Try texting them something sweet, romantic, or even a bit risque, if you’re comfortable. Reminding your spouse that you’re thinking of them, especially if it’s just a normal time of day when they may not expect you to have them on your mind, helps them to feel special and loved.
Lastly, and perhaps most importantly – consider your spouse’s love language. If you’ve never read about love languages or discussed it with your spouse, I highly recommend you look it up. The Five Love Languages: How to Express Heartfelt Commitment to Your Mate is a book by Gary Chapman. You can also find lots of information online about love languages with a simple Google search. Basically the premise is that everyone has their own particular “love language”, or ways that you experience and express love, and your love language may not be the same as your spouse’s love language. It’s important to know how your spouse feels loved so that you can try and be intentional about expressing your love to them in a way that they perceive as being loved. For example, my love language is more about hearing my spouse say out loud that they appreciate me or that I’ve done a good job, whereas quality time is my spouse’s love language for sure. Knowing this helps us each be more mindful about expressing our love in a way that speaks to their love language and not just our own.
]]>The process to attempt to obtain a safety bed through coverage by Medicaid or private insurance typically looks something like this: First, connect with a durable medical equipment, or DME, supplier which serves your area or region. Since safety beds are usually classified as DME, a DME supplier is a company that specializes in selling or renting these types of medical supplies. Next, get support and statements from your child’s physicians, therapists, and caregivers, and obtain documentation that supports your child’s need for a safety bed. This documentation can range from medical records which show your child’s specific diagnoses and medical needs, to a “prescription” for the bed from your child’s physician, to a letter of medical necessity which explains in detail why insurance should cover a safety bed for your child. Be sure to check your state’s guidelines for specific requirements. It should also be noted that most insurance says coverage will only be provided for one DME item that meets “minimum specifications” of child’s needs, and most require prior approval.
Once you have all the documentation your state and insurance provider requires, you will submit the request to your insurance provider. Sometimes the DME provider will assist you in helping you gather paperwork and submit. Once submitted, be prepared to wait to hear back, sometimes months. Once you do hear back, please note that it is very common for your initial request to be denied and to need to appeal the decision, which can prolong the process further. Some people report having multiple appeals denied, meaning the entire process could take months or even years, which can be an extremely frustrating time for parents and a potentially dangerous time for the child who is without the safety bed they need. If your request is approved by your insurance, there are maximum amounts allowed, meaning insurance will only cover up to a certain cost, leaving you to pay the remainder. It is rather difficult to find specifics on how much insurance may cover since every insurance provider is different. Even Medicaid coverage is hard to pin down, considering things are handled a bit differently in each state, and coverage is determined based on each child’s unique needs, but our research suggests you may expect around a maximum coverage of about $4,000 for a typical safety bed covered by Medicaid, with most private insurances likely covering less. Considering the average cost of most FDA registered safety beds in the US comes in around $6,000, that could leave families with a significant balance to cover, sometimes $2,000 or more.
This all makes the process of obtaining a safety bed for your child sound rather intimidating and downright disheartening, doesn’t it? Keep in mind that you have options. You may prefer to go the insurance route first and see what happens, but you can also look into ordering a safety bed directly from the manufacturer. When pursuing through insurance, you typically have to go through a DME provider. While DME providers can be helpful with submitting paperwork for coverage, when beds are ordered through DME suppliers, the cost can be higher since the DME company acts as a sort of “middle man” in the process and can take up to a 40% commission for the sale. Ordering directly from the safety bed company allows them to sell their beds at a lower cost and ship directly to the consumer. For example, with Safe Place Bedding, LLC, our permanent safety beds are high quality and registered with the FDA just like the other companies, but we prefer to sell our beds directly to you, the parent and consumer. This also allows us to offer payment plans and discounts to our consumers – if you use our offer code Actfast, you can take $2,000 off any of our permanent beds. This would make our basic bed under $2,000, and if you chose payments through Klarna, the payments would only be around $100 a month. (But act quickly – you will have one week to use the code before it expires, and this discount code will not be offered again.) The best part? You can order whenever you are ready, with no waiting around for insurance approval or a lengthy appeals process.
At Safe Place Bedding, LLC, our frames are made one at a time at our local wood shop. Each board is handpicked by our master craftsman to make the best possible frame. All corners are rounded for your child's safety, and padding can be added to our frames for an extra charge. Customers can choose from one of our stock colors or custom design the look of their cover by choosing a pattern or color they prefer. You will also receive an 8" Certipur US certified foam mattress, and all our covers are made out of top quality material. Take a look at our website, www.safeplacebedding.com, for more information and to see examples of our work. We offer permanent safety beds as well as travel beds, and as parents of a special needs child ourselves, we understand the importance of a quality, affordable safety bed. Email us at limitless@safeplacebedding.com, or call or text us at 614-602-5196 for more information. We look forward to hearing from you!
]]>Have you tried everything you can think of at home to help him or her get a good night’s sleep to no avail? If you answered yes, rest assured you are not alone. Studies suggest that up to 80% of children with neurodevelopmental disorders, such as Autism Spectrum Disorder (ASD) and Angelman Syndrome, are reported to have disruptions in sleep.1 Most experts agree that the first line of defense against sleep problems for children is what’s known as practicing good “sleep hygiene”. This includes a consistent bedtime routine which promotes good sleep habits. But what if you’ve got a bedtime routine established, and you’ve tried all the tricks in the book to help you child fall asleep and stay asleep, but it’s just not enough? That’s when you may wish to consider the possibility of adding a sleep medication or supplement for your child.
Are sleep medications safe? While there are many medications, supplements, vitamins, and even herbal remedies out there which tout the ability to improve sleep, there are none that are currently approved by the US Food and Drug Administration specifically for treating insomnia in the pediatric population. As with any medication or supplement, always consult with your child’s physician before you begin using any kind of sleep medication for your child, even if it is available over-the-counter. Having said that, there are many medications and supplements currently being used to treat sleep disorders in children. One of the most commonly recommended is Melatonin, which is typically readily available as a supplement or vitamin. Melatonin is generally considered to be safe for most children and adults when taken as recommended.
Which medication is right for my child? This is, of course, a question best left to your child’s physician to determine. What we can tell you, however, is the different types of medications frequently prescribed or recommended for sleep disorders in children, including children with special needs. This way you can research medications further and be well-informed if or when you choose to discuss the topic with your child’s physician. First, let’s discuss Melatonin a bit more. Melatonin is a hormone that naturally occurs within our bodies. It is primarily responsible for helping us to maintain our Circadian rhythms, which are the body’s natural way of establishing and maintaining sleep and wake cycles. Melatonin is typically available for purchase over-the-counter, often in the form of a vitamin. “Gummies” or chewable vitamins, can be especially easy for children to take, but be careful to keep them where children cannot access them, as children are sometimes tempted to eat gummies like they would any other candy. Also make sure to have children brush their teeth after eating a chewable vitamin, since the sugary and sticky nature of the vitamin can promote cavities.
What about prescription medications? There are lots of prescription medications out there commonly prescribed to treat sleep disorders. Of course, in children, particularly in children with special needs, your child’s physician will take many factors into account before determining whether a sleep medication is right for your child. They may consider your child’s age, medical history, current sleep difficulties, and other medications they may be taking, for instance. They may have parents fill out questionnaires or screening forms to help the physician get a better understanding of the sleep problems your child is experiencing. Once a medication is recommended, the physician will determine the lowest effective dose for your child. For children with ASD, an iron supplement may be recommended, as low iron is sometimes seen in children with ASD, and low iron can be associated with sleep disturbances such as Restless Leg Syndrome. Additionally, there are other medications which have been prescribed for children with sleep disturbances, such as ramelteon, clonidine, gabapentin, clonazepam, and trazodone. These kinds of medications may be considered by you and your child’s physician, typically as a last line of defense after other options to improve sleep have been exhausted.
Should I consider natural remedies first? There are some natural remedies, such as herbal teas and supplements, which may help with sleep. Before we go into detail about these remedies, first is a reminder that just because these remedies are considered “natural”, they still should be treated as any other new medication. Always review with your child’s physician first, as natural remedies can still potentially cause allergic reactions, can interact with other medications, or may otherwise not be appropriate for your child. Natural and herbal remedies sometimes used for children include: chamomile (usually in the form of a tea), magnesium (typically in supplement or vitamin form), lavender (aromatherapy), and california poppy (non-opiate and typically sold as liquid drops). In addition to these herbs, also remember the importance of daily physical activity as a natural remedy to improve sleep. If your child is not active enough during the day, their body may not be tired enough for sleep at night.
Cite: 1. Jan JE, Owens JA, Weiss MD, et al. Sleep hygiene for children with neurodevelopmental disabilities. Pediatrics 2008;122:1343–50.
]]>Are your children getting enough sleep at night? Quality sleep is so important for children, including those kiddos with special needs. Sleeping habits can have an impact on all aspects of a child’s life, from affecting their ability to pay attention and learn to their mood and behavior. Parents of special needs children in particular may find it challenging to get their kids to go to sleep at night and to stay asleep, however. If you’ve found that your child is struggling to get a good night’s sleep, here are some tips to help you establish a bedtime routine so your child (and you!) can catch some z’s.
Be predictable! A good bedtime routine is all about predictability. For many children, keeping the bedtime routine the same each night helps to create a pattern that they can rely on, which lets them know that bedtime is coming. Brush teeth, put on jammies, read a book, say prayers, sing a song – whatever you choose to do, try to do the same things each night and in the same order. Their brains and bodies will begin to associate the things you do each night with sleepy time, helping them to relax and prepare for bedtime.
Timing is everything. Begin your routine about thirty minutes prior to your child’s actual bedtime. That way, that gives you enough time to get through all the steps of the bedtime routine calmly and smoothly without you or your child feeling rushed.
Create a sleepy environment. A nice, calm, sleep-encouraging environment at bedtime is crucial but will likely look different for each child. While some children might prefer dim lighting, a quiet, cold room, and comfy jammies, another child may like a colorful nightlight, a low-volume white noise machine, a warmer room with no blankets. You know your child best, of course. Just keep in mind any sensory needs; for example, some children may dislike the way pajamas feel on their skin, and another may be distracted by bright streetlights outside their window. Once you figure out what works best for your child, repeat it every night to create that routine.
Have a snack! While most experts will advise against eating a heavy meal too close to bedtime as well as avoiding sugary or caffeinated snacks or beverages, allowing your child to have a light, healthy snack shortly before they go to bed can help to keep their tummies full until morning.
Limit screen time. If your child is a big fan of watching shows on TV or playing games on their tablet, try to plan to have screen time stop for the evening at least 30 minutes before you begin the bedtime routine. The stimulation and the bright lights from the screens can hamper the bedtime process. Pro tip: some tablets and smart devices can now be set to turn themselves off at a certain time each night, keeping you from having to be the “bad guy”.
Keep a sleep journal. If your child frequently struggles to fall asleep or stay asleep, try keeping a journal to see if you can identify any patterns to their sleep difficulties. This can help you figure out what works and what doesn’t for your child.
Consider supplements. Sleep supplements such as Melatonin or Valerian are generally considered to be a safe and effective way of supporting sleep in children, but of course, always consult with your child’s pediatrician before beginning any new medication, even supplements or herbal remedies.
We hope this is helpful information for you. Try out some of these tips and let us know how it goes. Remember, sleep isn’t just important for your child, it’s important for you, too. Good sleep for your kiddos means a better night’s sleep for you as well. You need to take care of yourself in order to take care of them!
]]>That's where sleeping in an enclosed area can come in handy. With the proper safety bed, you can create a secure, comfortable, and safe environment where you or your child can get a good night's sleep.
But, there is more to an enclosed area than it meets the eye. That’s why we decided to share all the benefits of using a comfortable sleeping section for a special needs child or an adult. So, let’s get right to it.
6 Benefits of Using an Enclosed Sleeping Area
Going to bed at night shouldn’t pose any threats. Children and parents need to sleep properly and get the rest they deserve. But, having a disability, such as Angelman, Autism, or developmental delay, can make the night-time routine a real struggle.
According to research, developmental disorders often affect the quality of sleep. They have a profound impact on cognition, daytime behavior, mood, physiology, and overall performance. Depending on the type of health issue patients are experiencing, they will constantly have to overcome a range of obstacles at night.
Some are prone to climbing out, falling, or getting their head stuck between the railings. Regardless of the type of health issue the patient is having; an enclosed sleeping area is here to meet their needs. Here is what makes it so beneficial with special needs children.
Safety
Safety should be a top priority. Using simple bed rails with a special needs child can be dangerous and ineffective. Studies show that 1 in 4 of all falls in healthcare facilities are falls from bed. When coping with a disability, falls can be a real problem.
Take microcephaly – a rare health condition, for example. Since the child’s brain has stopped developing after birth or during pregnancy, their head becomes smaller. Patients also have a low muscle tone in their trunk. Therefore, they are prone to falling during sleep.
Typical bed rails and electric beds are a potential risk for a special needs patient. Part of their body can get trapped inside the gaps, like between the bed rail and cover or bed end and mattress.
This could pose a serious risk of injury, falls, or suffocation. With an enclosed sleeping area, particularly a safety bed, you are getting a cocoon-like effect. The surface is tightly sealed, without any gaps or risks for entrapment. You get gap-less edges, which means you don’t need to worry about your child’s safety while they sleep.
The enclosed sleeping area is designed to address all the unique issues. It protects the child from falls, not just when they are asleep, but when they are awake as well. The base can be strapped into place, the frame has zero gaps, and the buckles can be tightened to add an additional layer of security. That’s why it makes for an excellent sleeping choice.
Concentration
Special needs patients are prone to daytime drowsiness, poor performance, behavior changes, and trouble concentrating. When you pair that with sleeping problems, it can become a serious issue in the long-run. Certain disabilities are causing regular sleep disturbances.
It could be night terrors, sleepwalking, falling, snoring, etc. About 25% of children in preschool, 33% of adolescents, and 43% prepubescent are dealing with some kind of sleep difficulty. But the rates of sleep disturbances in special needs children go even higher.
For instance, 25% to 50% of children with ADHD have trouble sleeping. While 34% to 86% with intellectual disabilities can’t get a good night’s rest, research shows.
Remember, sleep is important for everyone. But, for a special needs child, it becomes a valuable component of their psychological and physical development. When the quality of sleep is declining, so is their ability to manage their health complications.
To manage these sleep irregularities and control the abnormalities, you need a special sleeping environment. The enclosed area from a safety bed is meant for exactly that.
With safety beds, the sleeping surface gets smaller, which helps children focus on their sleeping routine. Instead of looking around the room or letting their minds wander, the enclosed area will maintain their focus and help children get shut-eye.
This can help boost their quality of sleep. With it comes a range of different benefits. Because the child will be sleeping better, they will also boost their natural healing system, heart health, and blood vessels. The longer they use the product, the easier it becomes to fall asleep in it. Sometimes, children quickly get accustomed to it because of how comfortable the whole surface area is.
Reassurance
Most special needs patients rely on a makeshift bed. Many use a guard rail to create a comfortable sleeping environment. But, these beds don’t have the capability to stop a special needs child from climbing out of bed.
Those who struggle with regular nocturnal panic attacks need to feel safe. Studies show that 20% to 45% of people with panic disorders have repeated panic attacks at night. They experience increased palpitations, shaking, numbness, sweating, or shortness of breath. In cases such as these, they may try to get out of bed in the middle of the night.
Wandering can be another serious issue, especially if a small special needs child moves up and down the house unattended. The safety bed is specifically made for problems like these. It can put a child’s mind at ease.
Getting tucked in their blankets and sheets under an enclosed space can give them that reassurance. This can be useful for keeping the thoughts at bay and allowing the user to enjoy nap time. Although it can't manage the panic attacks, it can help them sleep better and get the much-needed rest.
Comfort
Regular or hospital beds may not be the best choice for a special needs patient. Take the hospital beds, for example. They have a “clinical” feel to them, which ends up creating a cold and unwelcoming atmosphere.
The regular bed is too wide and open that paves the way for constant stimuli to interrupt their sleep. Placing a mattress on the floor is not a good idea either. It is much easier for the child to get up and wander at night. Plus, they may inhale dust or dirt from the flooring.
The safety bed is different. It creates a small yet safe environment. Once a child or an adult gets accustomed to it, it will become their go-to sleeping spot. The design will eventually feel familiar, while the colors will make them feel welcomed. Plus, our unique designs are meant to put a smile on anyone's face. They are fun, colorful, and vibrant.
So, not only are you creating a safe sleeping environment, but you also invest in comfort. That’s what makes the safety bed a convenient sleeping space.
Entertainment
Our safety beds have a perfect size. The child can play in it and entertain themselves as they are trying to fall asleep. With an enclosed area, the child is in complete control of their movements, allowing them to adjust their body position and motion. This could help boost their sleeping patterns.
The reason for that is relatively simple. When you use too small or tight enclosed sleeping spaces, your child may develop an aversion to that area. For example, if the makeshift enclosed space you designed doesn't allow the child to stretch their hands and adjust their position, it will be difficult for the child to enjoy sleeping in it.
But, the safety beds are different. They have just the right amount of space that doesn’t compromise the safety of the person that’s sleeping in it. Besides, when a child enjoys their sleeping area, you too will have peace of mind.
See-Through Design
Not all safety beds have an aesthetically pleasing design. Some can feel claustrophobic or uncomfortable for a child. Of course, every child has a different taste, but when it comes to selecting a safe bed, you need an option that will create a pleasing sleeping environment.
With our safety bed, you get see-through edges. They are perfectly designed to calm the stimuli, but they also don’t feel like a confined space. The see-through sides allow the child to enjoy the surroundings before going to sleep, which won’t make them feel anxious or alarmed. This is a key strategy when trying to get a special needs child to sleep.
Final Thoughts
Sleeping in an enclosed area has a lot to offer. It creates a safe, reassuring, comfortable, and entertaining sleeping environment. Even though it can’t manage the various health complications, it can give users a sense of peace. The product is designed to boost their sleep quality, which, in turn, could make their health issue a lot easier to deal with. That’s why having a safety bed for a special needs child can come in handy. You are getting a lot with such a small space.
References
https://specialneedsplanning.net/statistics/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1281388/
https://www.researchgate.net/publication/5353968_The_effect_of_bedrails_on_falls_and_injury_A_systematic_review_of_clinical_studies
https://www.novita.org.au/helpful-information/bed-safety-for-children-with-disabilities/
https://www.familylives.org.uk/advice/your-family/special-educational-needs/sleep-advice-for-parents-with-disabled-children/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1281388/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181635/
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UnitedHealthcare Children’s Foundation – provides medical grants to help children gain access to health-related services not covered, or not fully covered, by their family’s commercial health insurance plan
First Hand Foundation – provides funding for individual children—both domestically and globally—who need assistance with clinical necessities (such as surgery, medication and therapy), medical equipment and travel related to care
The Lindsay Foundation – assists families with the resources necessary to provide medical treatment, therapies, and rehabilitative equipment in order to improve the quality of life for their special-needs children
ARCH National Respite Network and Resource Center – assists and promotes the development of quality respite and crisis care programs to help families locate respite and crisis care services in their communities
NeedyMeds – national non-profit organization that maintains a website of free information on programs that help people who can’t afford medications and healthcare costs
Aubrey Rose Foundation – provides assistance to families caring for children with life threatening illnesses by providing emotional and financial support
Hands to Angels – supports the identification and eventual prevention of rare, genetic disorders, and provides financial assistance to families coping with the many complications of these disorders
The Maggie Welby Foundation – provides financial assistance for children in need, families in need, and organizations benefiting children
Building Blocks For Kids – provides assistance to meet the needs of children with physical, emotional and developmental challenges by bridging the funding gap for products and services
Grotto Humanitarian Foundation – brings smiles to children with special needs by providing dental care including costs of dental treatment, hospital, and anesthesia
The Ray Tye Medical Aid Foundation – provides funding for in-hospital life saving medical treatment and surgeries
The Parker Lee Project – organization dedicated to helping the families of children with medical needs obtain the supplies/equipment, education, and support
Aubrey’s Warriors Foundation – assists families with emergency funding by fundraising, transportation assistance, resources necessary to provide medical treatment, therapies and rehabilitative equipment
The Prayer Child Foundation – provides assistance to children with physical and emotional challenges
Different Needz Foundation – provides grants to individuals with developmental disabilities, their families and organizations to provide medical equipment and/or services
Variety – the Children’s Charity – serves children who are less fortunate and who live and grow up with a serious illness, disability or disadvantage
HealthWell Foundation Pediatric Assistance Fund – provides financial assistance so children can start or continue critical and life-saving medical treatment
Alyssa V. Phillips Foundation – provides financial support to those impacted by cerebral palsy so they can receive necessary therapy and equipment
Danny Did Foundation – provides grants for intervention devices for children and adults with epilepsy
Eden’s Hope Foundation – works to ease the financial burden on families with children in treatment for neuroblastoma for expenses not typically covered by insurance or benefit programs
Small Steps in Speech – assists children with speech and language disorders by funding supplemental therapies and treatments for individuals
Air Charity Network – comprised of a network member organizations who cover specific geographical service areas and coordinate volunteer pilot flights in the United States
Miracle Flights – provides financial assistance to low-income children for commercial air travel to obtain special medical care
Mercy Medical Angels – their mission is to ensure that no one in need is denied medical care due to a lack of transportation
Southwest Airlines Medical Transportation Grant Program – provides complimentary, roundtrip tickets to participating nonprofit hospitals and medical transportation organizations
Footprints in the Sky – provides free flights for patients to medical facilities throughout the United States using donated charter and corporate jets
Angel Wheels to Healing – provides non-emergency, long-distance ground transportation to financially disadvantaged, ambulatory patients who are traveling for treatment
Air Care Alliance – connect with more than sixty groups of volunteer pilots who fly patients for care or provide other flights or aviation services to help those in need
Ronald McDonald House Charities – network of local Chapters has been making children happier and healthier by keeping families close
Believe In Tomorrow Children’s Foundation – provides exceptional hospital and respite housing services to critically ill children and their families. We believe in keeping families together during a child’s medical crisis
All information was found on "No Hands But Ours website"
https://www.nohandsbutours.com
Safe Place Bedding offers beds that are specially designed for special needs children so as to allow them a safe and secure sleeping environment. In addition, it will also give the parents a sense of peace and comfort.
The bed comes with straps that you can attach to another big-sized bed. With transparent netting along with wider welds, your child will feel very safe as well as comfortable. The nets are easy to clean and the bed can be set up in about 5 minutes. One of the most crucial features of the bed is that the bed is 100% portable. You can deflate the bed, pack it up, take it a new place and inflate it. This will allow special needs children to travel along with their parents wherever they go. Adding to this, it will make family vacations and frequent overnight dates more comfortable and easier for the parents as well as the child. Safe Place Bedding also provides a travel bag to carry your bed as well as the electric air pump. Travel bags are most convenient if you travel frequently.
Safe Place Bedding Bed gives the child and parent immense freedom and independence to travel without worry or stress. Each and every day, your child can sleep comfortably and happily.
To know more about these portable beds, write to us at limitless@safeplacebedding.com . We would be happy to help you.
To know more about these portable beds, stay logged into the Safe Place Bedding Website. We would be happy to help you.
]]>Whether it’s an overnight stay or a long vacation, Safe Place Bedding will ensure to provide your child with a safe, homely and comfortable sleeping place. Further, as a parent, it will allow you to visit your friends and family more frequently and leisurely. In addition, you will also be able to travel more comfortably and safely.
The Bed offers several unique features that are best suited for your special needs loved one. Here are some of them:
In addition to the aforementioned features, you can also purchase a bag where you can fit the bed as well as the pump which will weigh around 20 pounds or 9.07 kgs. We also offer a 100% satisfaction guarantee, if you are unhappy within the first 30 days, you can ask for a complete refund. The product has also been tested and verified to assure total safety to your child or whoever uses the product.
The dimensions are as follows:
Bed: 75"L x 39"W x 34"H (190.5cm x 99.06 cm x 86.36 cm)
Bag: 25.5" x 13" x 11" (64.77 cm x 33.02 cm x 27.94 cm)
Pump: 4.5" x 7.2" x 14.5" (11.43 cm x 18.28 cm x 36.83 cm)
Let Safe Place Bedding assist you in taking care of your loved one. We understand the challenges you face, and we have contributed in our best way possible to support you so that you can live healthier and happier.
To know more about these portable beds, stay logged into https://safeplacebedding.com We would be happy to help you.
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Further, children suffering from Down’s syndrome, Attention Deficit Hyperactivity Disorder (ADHD), Epilepsy, Angelman Syndrome and Autism must be necessitated with specialized bed tents. With Safe Place Bedding you can certainly reduce your stress when visiting your relatives. Built-in camp bed style, these beds do not require any bulky foam mattress or an air bed to make sure that your kid has a good night’s sleep.
The beds are tailor-made for children with special needs. Let’s take look at some of the features of the Safe Place beds:
In addition to the aforementioned points, the beds are very easy to install and uninstall when you plan for an overnight stay at your friends’ or relatives’ place. Further, the user-friendly product makes traveling overnight easy, and takes away the fear of ‘roaming’ with our locking mechanism.
At Safe Place Bedding, we understand what you require to take care of your loved one and therefore, we offer outstanding customer service. In fact, this is a must-have if you really have a child who suffers from traumatic brain injury, sleepwalking, Alzheimer’s disease, Smith Magnesia syndrome or cerebral palsy. With special care demanded from children, we will help you provide just that to your loved one. Enjoy your freedom to visit your families or friends without worrying about sleeping comforts and safety while sleeping with your special needs loved ones.
To know more about these portable beds, stay logged into the Safe Place Bedding Website . We would be happy to help you.
]]>Stacy Warden is a fellow parent of a beautiful special needs son named, Noah. She is also a mommy blogger who gives a voice to special needs families, and also lets you know the latest buzz in regards to new products on the market. Well, she found us and reached out wanting to help share about the freedom families are finding everyday with Safe Place. Read about her and Noah's immediate reaction to our beds...
http://noahsmiracle.blogspot.com/2016/12/the-splendor-of-safe-place-bedding.html
Traveling to the grocery store with any children, in general, can be like a scene from the movie Braveheart... As you drive to the store, you're already mentally preparing yourself for what will or could unfold once arriving. That is, assuming the ride to the grocery was peaceful and filled with the sound of Veggie Tales, Paw Patrol, or something like that, and not a melt down. You find a parking space after driving up and down every isle to find the spot closest to the door, AND right beside a cart holder thingy (or whatever those are called). Inhale, exhale. Turn around and give the speech that will set the tone for the next 1-2 hours. "Today, we will conquer this grocery store... We will not miss one thing on my list because you will be well behaved and stay by my side through this entire journey. I believe in you! Now lets go get some toilet paper!!... Yes, Johnny, you have to wear your shoes; you will burn your tootsies on the pavement."
The tone is now set, or so you think. You manage to get little Johnny into the store with shoes on his feet, but immediately after entering the shoes are thrown into the cart. It's not worth the fight. After all, you are here to win the war. Inhale, exhale. You have this grocery store mapped out. You are a prepared parent! To enter a store without knowing the layout is to walk to your own demise. First things first, the potty break. Every seasoned parent knows the power of the potty break. It can save 20 minutes off a grocery trip. That is, of course, your children actually have to go! It's a risk, but one worth taking. Everyone but little Johnny goes potty, and after much negotiation and a very persuasive speech on his end, you believe him, so, onward with the grocery trip!
You move quickly, with one skipping with the occasional dance leap, the other in a near full run. Exercise is good for their health, so you continue. The quick glance back to see if they are still on your tail, and not running into center isle displays or other shopping warriors. By isle 3 you are nearly half way done and the sense of pride starts to trickle in. And then abruptly interrupted by the all too familiar phrase, "I need to go potty!" (Insert your glance) "But I weally weally need to go!!!" You remind him of his previous declaration of not having to pee. Then the hand goes to the, well, you know, legs crossed. Other shoppers at this point noticing the poor chap's circumstance. Not wanting to be that parent, you whip your cart around and head back to the restroom.
20 minutes later...
After the restroom experience, where little Johnny has to do everything himself and allowing each child to pick up some random toy left by other parent shoppers, no doubt, to keep them busy and hopeful to adding it to their collection of random toys on the floor of the car, you are off! Picking the pace up even more and deciding what items to scratch off the list because you forgot them in isles 1-3, your warriors behind are starting to slow down. Some "encouraging" words later and you make some ground. Then... hunger strikes, ironically, in the isle where the smashed fruit in those fun, kid-friendly, squeeze containers live. I honestly think they are placed halfway through the store on purpose, just so the kids will beg and the parents think, "Hey, it's healthy right?! Win, win!" Off screws the cap, temporarily satisfied child.
You are now in the home stretch... one child reluctantly now in the cart, surrounded by groceries, trying his best to persuade you to let him out of the cart. Ha-ha, not this time buster! The other, practically crawling, due to sore legs from skipping and dance leaps. You grab the bananas, take a quick look at the list to see what you missed, other than what you took off the list already, and... bam! Toilet paper! How did we forget the toilet paper?! You question whether it is actually needed, after all, real warriors don't use toilet paper... Are napkins a good substitute? (they're not, first hand experience) Not able to fully convince yourself, you throw the crawling kid on top of some canned goods and high tail it to the back of the store.
You will be victorious!!
Another shuffle at the check out line, and more persuasive talk about the random toys long forgotten about in isle 8, but is now the center of their world! You quickly put them on a nearby shelf and hustle the groceries out of the cart before a mysterious item finds it's way on the conveyor belt (happened to me more than once!). Not forgetting that now empty fruit smash pouch and finding little Johnny's shoes, him now in the cart with dirt-stained feet, you don't even bother. Before slipping out of the store, you grab yourself a Starbucks, a little victory treat on the way home. Dora, Veggie Tales or whatever sounds really good about now! You walk back to the vehicle, hair a little undone, make-up (if wearing any) a little smeared, you give out a sigh. It is finished!
Now... enter in a special needs child into that scenario... I don't think any movie made is an acceptable metaphor! Generally, with my Sky, unless I am blessed to get one of the carts made for special needs persons, I use two carts. One to push, one to pull. (Oh, Sky can walk, but that usually turns into an Olympic race and not a grocery run.) Since pulling the heavier load is the easiest, weighing in over 100 pounds, I pull Sky. That lasts for about a whole 10 minutes until he discovers he can kick my hand with his AFO's and shoes covered feet! Ouch!! Sky has been known to clear shelves, so I must park him at least 3 feet away from ANYTHING. I can control where he is, but not other shoppers. The first look I get is, "why is there a, nearly, teenage boy riding in the cart, while your 3 year old is walking?" Some have even said this out loud. But, usually after getting a quick slap, hair pulled or some groceries flown out of their cart, they get it and I fall over myself in apologies. Move Sky's cart, him now near a food shelf, then I have another problem on my hands. One day Sky knocked over half a Juice Barrel display! Guess he was thirsty! Ha ha ha...
Check out is really the struggle. A narrow lane with goodies on one side, and a conveyor belt that can easily be climbed onto on the other. Me unloading groceries, girls begging for random toy, Sky deciding its time to unload himself onto the conveyor belt... The worse is the card reader, or the spinning bag holder. More than once have I gotten the fifth degree about Sky spinning the bag thingy! Some joyful tears were shed the day the self checkout stations came to my hometown!
As wild and crazy as most of you reading this understand the grocery trip to be, in the end we are the blessed ones. How boring would it be to have an uneventful shopping experience? (insert fake laugh) Our life experiences give us a sense of humor, and many memories. We always have a story, although not funny at the time it happened, later on we chuckle and wonder how we lived through it. But, we do.
We are the mighty shopping warriors!
We may be the crazy ones to many others, in reality, we harness a love so powerful it makes us brave.
Until next time... don't forget the toilet paper.
I bet every person who read this title got that Aerosmith tune stuck in their heads! As I took the picture of this tree hanging out on the side of a cliff in Colorado, it was the first thing that came to my mind.
It's hard to believe we have been away from home for over three weeks! It has felt longer, but then again, we have done so much in such a short span of time. We have traveled across the country, site-seeing on the way out; and since we have been in Oregon we have taken a weekend trip down into California. Not to mention getting settled in and starting up work and homeschooling schedules. Phew...
You may be wondering how we landed in Oregon... Jon was offered a 7-week nursing contract a few months ago. Many factors weighed in on the decision to take it, but we remembered dreaming about visiting the west coast at the beginning of the year. We said it would be our first choice if we could afford to go. Then, Jon took it a bit further and said he would love to spend at least four weeks living near the ocean. We sat those dreams on a shelf, but not too far out of reach, as we poured into building the Safe Place business. A few months later we packed up our life, loaded a trailer full of Safe Place beds, and away we went!
Fast forward to standing on top of a mountain, looking at a tree livin' on the edge, I began to ponder. How did that tree get there? Why is it still alive? How does it relate to my (and your) own journey? So, I did some research.
Not all trees can live on the edge of cliffs, while others thrive there. According to priweb.org, the roots have to continually penetrate the rock (literally splitting it over time) to get to the nutrients needed to survive. At the same time roots wrap and cling onto the rocks to hang on (for lack of better words).
Makes me think about life... We all have our "edge". For some it's taking a brand new adventure, for others it's pushing their bodies to the max, while for some it's advocating for their child's needs. The list is limitless. But, for all, the "edge" is that place where you no longer feel comfortable. I'm not afraid of heights, but as I stood over the railing while a storm was picking up to get that shot of the tree, I felt uncomfortable!!
Most trees live in the soft soil, where their roots can penetrate easily and they can spread out and reach high in the sky. They thrive where they are, and that's a beautiful thing. But, those trees also miss out on seeing the eye of a storm coming across the horizon and the thrill of hanging on for dear life when the winds begin to blow. Their leaves aren't the first to feel the warm rays of sunshine in the morning hours, or oversee the vast valley below. Ok, I'm sounding a bit ridiculous here! The point is... we can remain comfortable in our soft soil or we can venture out to our edges. Yes, we will have to push through some hard stuff and learn to cling to the Rock. There is sacrifice involved in both places. But, we will become stronger and experience a thrill in life we never thought imaginable. Believe it or not, we are ALL created to live on the edge.
Dr. Larson, an ecologist, said, "There is something wonderful about animals and plants that depend on cliffs. They're there because no one else can live there. They have a physiological toughness that allows them to sit out in these places that nothing else can touch, and they thrive there."
Not all are willing to risk leaving their safety zones. And who would blame them? It's scary! But there are those trailblazers, the forerunners, who will say yes to the stirrings in their hearts and take a step toward the unknown.
I would like to believe I have this "living on the edge" thing figured out, but as I journey through life, I realize I am just a little seedling pushing my way through the rock and at the same time gripping on for dear life, all while trying to get a glimpse of the horizon. I have a feeling I'm not the only one...
What is your edge? Is it worth the risk?
Until next time... allow that Aerosmith song to radiate through your brain and
live without limits...
When we talk about adventures, we often think of going to some majestic mountain-top cabin, or an exotic island. Maybe even, a stroll through the streets of Paris or a leisurely gondola ride in Venice. All these places sound amazing, and I most certainly want to do all these things! But today, I want to appreciate the everyday adventures.
These are the adventures we can easily take for granted. The things we do, and not realize we just had an adventure. They come in many forms... a movie, a bike ride at a local park, a hike to a nearby waterfall, a shopping trip, a ball game, and even a community event at your hometown library. The list goes on. Some would call it appreciating the small things.
This thought of "everyday adventures" popped into my head about a week ago when we visited a waterfall about 30 minutes from our house. We didn't travel right when summer started to our most adored beaches. Mostly for two reasons: 1. we are traveling to expo's for Safe Place this summer, mini work-cations have become a norm for us lately, and 2. we are planning a 9 week trip across the country in August. Another work-cation, this time for Jon's nursing. We are beyond excited!! Until then though, we must resist the call of the beach sirens.
I'm not sure about you, but this summer has been different for me. There have been years where school was let out and it hit me like a ton of bricks! I do home school our girls, but Sky attends a school designed to service special needs children. Adding a third child, all day everyday, and adding the special attention he needs totally changes the dynamic of the day. I'm not complaining, just being transparent. It can be crazy hard at times! However, this summer, there was an excitement in the air. I honestly could not wait until Sky was out of school, and to no longer be confined to school schedules and bus pick-up and drop-offs.
I had been dreaming of getting Sky a new bike that seated two people. Since the girls are getting so good at riding bikes, we thought this could be a fun, free activity to do this summer. Of course, the bike we wanted for Sky was over $2,000! And that was the low end. One day however, we happened to look on craig's list and found one (only one, in all surrounding states) up near Lake Erie for $330! Coincidence? I think NOT! We drove up and got it, and had ourselves a wonderful adventure by the lake for an afternoon.
We've ridden bikes nearly everyday since then! On top of that, we've attended a hot air balloon festival where Alara and Abigail danced with their dance studio, and a few trips to the library. It may as well have been a candy shop! Even Sky loves the library, and the summer activity camp they attend every week. I personally believe taking Sky to the library is a great way to teach self-control. I know he would desperately love to tear some books up!
To bring this entry full circle... I want to express the importance of those everyday adventures. Live each moment to the fullest. Before we know it, summer will be over, the kids will be going back to school, the pool will be closed, and we will say "where did the time go?" An anonymous writer once wrote, "enjoy the little things, one day you'll look back and realize they were big things."
This weekend Jon and I will be traveling to Chicago for the Abilities Expo. This is a pretty large show bringing in around 4,000 people! We are nervous-excited, and plan on delivering hope of limitless living for families like us. Your thoughts and prayers are appreciated as we pursue our dream and take you with us!!
Until next time... Adventure without Limits.
Some of our summer-time moments below...
This is not some catchy title; this is the literal truth! I mentioned in our last post I would share about the protruding vomit. So whether this story makes you laugh, cringe or hurl yourself... you will find it entertaining!
In Sky Man's first 3 years of life he aspirated on liquids. Meaning some of the fluid he drank went down his air way into his lungs. For a while he could only drink thickened liquids til his muscles developed in his throat well enough to swallow without fluid escaping down his air way. In the beginning we had no clue what was happening until a couple bouts of hospitalization due to pneumonia. At that point, the doctors did some further testing and found the reason. Thank God he stopped getting sick as often after we started the thickened liquids.
However, until that time, Sky literally would vomit several times a day. And it protruded! It was frustrating, and disgusting. We felt so bad for him.
The Beast
We had this car... It was a beast! My husband hit 6 deer with it, the insurance paid it off two times over (they never totaled it!), and it had over 200,000 miles on it when we SOLD it (still in running condition). In fact, I believe my husband had tie straps and a pair of socks holding the headlights in it. One headlight shown directly down onto the road, the other up in a tree in case you wanted to shoot a raccoon while driving! It was ugly, but that faithful car got us through the most financially stressful time of our marriage! However, I will say the worst part about the beast was the permanent coating of crust which lived on the back side of the drivers seat. We tried and tried to clean it out, but over time, nothing was coming off that seat! The source of that crust: Sky's vomit.
Jon used to wear a baseball hat all the time, and it was a good thing he did. Those hats protected his hair from lots of hurling. We would often be driving down the road, then all of a sudden liquid would fly past our faces and onto the windshield. I would hurry and grab a towel to try and catch it, then turn back around to clean the windshield as well as Jon's hat! Sky kept us on our toes! And still does!
I was super surprised anyone would want to buy that car! But, a couple years ago we seen it on the road (you can't miss the Beast!), with that headlight still propped up in the trees...
I am so thankful the hurling season of his (and our) life is over. I'm glad he can now drink with ease; God has done good things in our life! Whenever we share this story we laugh til we spew! Although, in the moment, it was rough; it felt like it was never going to end.
"...for I will turn their mourning into joy and will comfort them and give them joy for their sorrow." Jeremiah 31:13
This verse is so true in our lives. When telling this story I do it from a heart that was once sorrowful and bitter, I've had the "why me" moments in my life. But God turned all that into joy and laughter. And even though it is still very difficult raising a special needs child, I can honestly say "choose me again God!"
Until next time... Hurl, I mean, Live without Limits
Now seems like a good time to pick up our story from where we left off back in February. If you haven't read my very first blog be sure to check it out, click here!
After receiving confirmation of Sky's diagnosis, we had two emotions. 1. relief we finally had an answer, and 2. oh crap! because we knew our lives were going to look different than we "expected". We already felt incompetent at this parenting thing, now we were taken to whole other level! In fact, even as I'm writing this I'm being flooded by emotions. We may have "expected" our son to be a certain way (aka, a typical child), but God has far exceeded our expectations with what He has done in our lives.
What seems like small and seemingly insignificant milestones to most parents, are reasons to throw a block party for those with special needs children. When Sky was one he was not yet rolling over independently. From then on he has been in consistent therapy. By the time he was diagnosed at three, crawling was his mode of transpiration. Shortly after he would eventually learn to walk with a walker and holding our hands. At six, he took his first independent steps and hasn't stopped! Up until now he is still nonverbal, except for occasional "Mom!" which started in 2015. Just another reason to throw a block party.
Learning to walk was just one area of Sky's life where he has developed. Some other areas were learning to grip objects, to feed himself, even his throat muscles had to get stronger in order to swallow un-thickened liquids! We learned that out the hard way; Sky had pneumonia three times before we knew he aspirated! Oh, the protruding vomit! (But that's another story for another day!) Those were scary times. Yet I know other parents have experienced far scarier moments than us. My heart goes out to every parent who can only see their child(ren) walking in their dreams. Of course, for the first six years of Sky's life my dreams were where he walked as well.
If we have learned anything, it is ALL THINGS ARE POSSIBLE!
Even through all the therapy, hospital visits, and extremely restless nights, Jon and I still pursued our goals. We both attended college full-time and worked full-time jobs. Looking back I wonder how we made it through. Whether we recognized it or not, Grace walked hand in hand with us.
We waited five years before having our next child. We were hesitant because of all we were experiencing with Sky. However, I knew one day we would have a girl. I found out I was pregnant with our second the day I graduated college. A perfect gift! I still had morning sickness with this pregnancy, but it was easier than Sky's and I was grateful! Everything was as it should be until I went in for a routine check up three weeks before my delivery date. While getting an ultrasound, the doctor discovered her stats to be off and said we are delivering her tomorrow...
Tomorrow!! What??
It was terrible timing... Our sitters were not prepared to help with Sky that week, and we had to call off work last minute. A big fiasco it was! But all of that was menial compared to what was to come next.
A new chapter was about to begin, and it came in like a lion...
Until next time... Live without Limits
Today Jon and I were reminiscing about a trip we took about 4 years ago. We visited a castle in Ohio for a quick restful getaway. At the time we only had Sky and Alara; Abigail was not yet born. However, it was anything but restful!
Once we got our room our first mission was to figure out sleeping arrangements. Our biggest concern was the safety of Alara. If Sky left his bed, there was a chance he could hurt her even if unintentional. Next, we needed to make sure nothing was in reaching distance for Sky to hurt himself. After rearranging some furniture and unplugging some lamps, that night Sky was tucked into the sofa bed and Alara was on the floor by our door.
In this particular hotel, the rooms still had big tube televisions. The T.V. was placed snugly in a hole in the wall about five feet from the floor. (I promise the castle was very nice, just needed some updating!) Sky was far away from this particular T.V., we didn't think it posed a problem.
So our night began with him jumping on his bed, and yelling. Sky's voice carries like a siren. I honestly think he likes the vibration he feels in his throat when he yells. Alara being subject to it from birth, sleeps right through it! (Abigail does too!) So, fortunately, Alara slept through this whole, wild night I'm about to unveil to you.
Jon and I have learned, the more we check on Sky the longer he stays awake. So, unless we fear his safety or the safety of a fragile item, we try to leave him alone.
After about 30 minutes of yelling and jumping, we heard movement of furniture. We now foresee no sleep in the near future for this kid (or us), and we need to place him back in bed. We moved Alara into our room for safety precaution. Then Jon took the first shift and put Sky back to bed and layed with him a while. Sometimes a little T.V. watching will silence Sky enough for one of us to get some shut eye. And sometimes puts him to sleep too.
That's what happened... so we thought. About two hours later, Jon comes to bed to hopefully get some sleep. He said, "I think he's tired enough now to finally fall asleep." At this point, it's around 1am and we can hardly keep our eyes open. We were barely asleep when we heard a huge CRASH then laughter!! We both jumped out of bed and ran into his sleeping quarters. Sky had somehow reached the T.V. and pulled it out of the wall!! A huge, heavy tube T.V. was now on the floor! Thank God it didn't even touch him. And miraculously the T.V. didn't shatter to pieces, but the entire screen popped off the front and was dangling by wires!
Sky was laughing, and we were beyond fried!
I took second shift, and around 3am, Sky finally gave into sleep. After that night, we needed a getaway from our getaway!
We investigated the T.V. the following morning, and discovered the screen appeared to have been "popped off" before as it had glue residue from a previous repair. So, we bought some Gorilla glue and fixed it ourselves! And, the thing still worked! It was a beast of a T.V.! IF it hadn't we would have paid for a new one.
This trip was one of many that lead up to where we are now. I couldn't imagine traveling again without Safe Place! Having peace of mind about his and our daughters' safety, and an enjoyable, RESTFUL getaway is priceless. And now, we are able to share this same experience with other families in the same situation.
Looking back, we laugh so hard at this story. While we lived it, we wondered why we even left home! But we weren't created to be trapped in one place our whole lives, we must adventure. We must take risks.
I hope you enjoyed this memory of ours. Until next time...
Live without Limits
We have lived in our tiny home nearly a year now. It really doesn't seem "tiny" to us anymore, it is just "home".
What is the vision for YOUR life? Does your current circumstances match that vision? What would your life look like if you truly pursued your dreams? You may be surprised; I know we were!
Until next time... Dream without limits. Crazy or Inspiring. We are often described as one or the other, sometimes both! Why? Well, for many reasons, but today I'll share how a family of five live in a 420 sq. ft. tiny house!
I've come to learn God's dreams for my life are much bigger than my own. And, He knows me much better than I know myself. He knew by "accidentally" watching a Tiny House documentary, the course of our lives would change once again.
Realizing your dreams requires a new perspective.
In 2012 we had purchased a nearly 2,000 sq. ft. old farmhouse. We loved the house, and decided to love it even more by remodeling it. We were creating our "dream house" (so we thought)! Then one day, smack dab in the middle of our remodel, we stumbled across a Tiny House documentary. After watching it, Jon and I looked at each other and knew we were called to live in a tiny house!
Living tiny fit our vision of traveling, and leaving our mark on the world. The question now was... How do we do that with three little kids? And one with special needs I might add! AND... we couldn't sell our house till the remodeling was done!! The odds were against us, and many thought we were crazy, but we had a vision for our life!
It took us many months to finish the remodel, as we did it ourselves. During that time, we researched and researched our tiny home possibilities. We finally found our realdream home. And we listed our home for sale after the remodel.
There are moments in life when you know God's hand is on something... This was one of those times. After being on the market ONE week, our house was sold!! But we found ourselves in a predicament... Our house sold so quickly, our new tiny home wouldn't be done by the time we had to be moved out of our farmhouse!
To our benefit, we just happened to own a 200 sq. ft. 1984 Winnebago RV. For two months, all five of us lived in that RV!! Something miraculous happened during that time... we realized We Can Do This! And we discovered simple living equals great freedom. The time we used to spend cleaning or doing house chores was now in a playground or some other exciting place with our kids! In fact, the vision for where Safe Place was going to take us was birthed in that RV.
Simple living equals great freedom.
When our new tiny home rolled up the road, tears streamed from my eyes. A year-long dream was now our reality. No more imagining, it was real life!
Our tiny home is like a mansion compared to that old RV! I'll forever cherish those cramped two months. We realized the value of moments far outweighs the value of "stuff".
I took this picture while on the trip. We made some modifications to this bed and they are reflected in our final product. It reminded me of where this journey all started. In a hotel room, frustrated by the lack of sleep and yet knowing there had to be a better way... That's when God dropped the answer in Jon's mind. Such a powerful moment, and a scary/wonderful adventure ever since!
It was dark when we arrived, so we were all eager to see our view of the mountains in the morning. We were not disappointed...
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