Tips From A Mom
From a mom,
Thoughts – Tips – and Tools for those things I wish I would have known.
Raising a child comes with challenges for any parent, but when raising a child with special needs many circumstances force you to think outside of the box. I’ve had my fair share of these times in the last thirty-two years. Additionally, I've learned that structure and consistency are helpful in enabling our kids to achieve their full potential. I thought I would share some of these struggles, along with what I did to overcome them, in case they are helpful to you. Some of them may seem overthought, yet there are times when we are too involved in the process to look beyond it. As I share this with you, I would like to note that I am not a legal expert, but I am a mom with lived expertise.
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THOUGHTS - mine to share
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I’ll start with emotions because it was the first of the challenges I was faced with. If after receiving the diagnosis about your precious baby, you experienced every emotion imaginable, you are not alone. It is perfectly acceptable to experience sadness, anger, fear, and confusion. After all, you have just embarked on a journey without knowing the destination. Yes, there will be obstacles that will make it difficult, and the directions on any map you may have received may be unclear, but sometimes it’s the spontaneous trips that are the best, in this case, the absolute best! That’s how it has been for me on my journey. I’m thirty-two years in and sometimes I still end up down a side road not knowing which way to go, but the unknown is what has made this a journey of unfathomable triumph and joy. I can honestly say, my son and the extra chromosome he surprised me with have made my life a better one.
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**I wish I had known- when I heard those seven dreaded words, "We think you're baby has Down syndrome" that I had the reassurance that everything would be OK and that my son and I would have a really happy life.
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Low muscle tone- One of the symptoms identified at birth that affects their endurance. Unbeknownst to me, they do not grow out of this as they get older. My son would tire after a few hours of walking around and even worse when we walked for long periods. When at the mall I assumed he was looking for a way to cut my shopping trip short. I felt horrible when I learned that one lap around the mall for him was equivalent to two times around for me. This does not mean they will be limited on what they can do. Individuals with Down syndrome can participate in sports, become gymnasts, cheerleaders or dancers, or even swim the English channel. The key is consistent exercise.
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**I wish I had known- our trips to Disney would have included more rest periods. (It’s a good thing my son is a Disney fanatic and it takes a lot to stop him when in the parks.)
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Note: Low muscle tone may also affect our kiddo’s ability to cough hard, and repetitively.
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Self-talk- It is common for people with Down syndrome to talk to themselves particularly when they become adults. Some reasons for this: They don’t always internalize their thoughts, it helps them to cope with challenging situations, and it even counters boredom. In some instances, it is therapeutic and comforting for them.
**I wish I had known- I only learned about self-talk within the last few years. Prior to this, there were times I became frustrated with the constant chatter, especially during times I was trying to concentrate on something important. For instance, when writing a book or attending Zoom calls. Knowing this could have helped me to be more understanding and patient and to plan better for those days that required quiet moments.
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Large or odd-looking tongue- Their tongue may look strange, full of splits or gashes, especially as they get older. Do not be alarmed. This is known as geographic tongue or fissured tongue. It’s a benign condition that affects the top surface of the tongue.
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The tongue may also be abnormally large for their mouth. This may affect their speech and whether they can chew with their mouths closed.
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**I wish I had known- I would have been more understanding when teaching my son to chew with his mouth closed. I could have also explained this when eating with those who are sensitive to this habit.
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Foods with different textures- It may be difficult for your child to neatly eat foods that have more than one texture. For instance, chicken noodle soup. It has broth, noodles, and chicken.
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**I wish I had known- mealtime would have been less frustrating. Tip: Dishtowels work better than bibs when younger and you can get good deals on napkins at Costco when they get older.
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Fears- of stadiums, riding bikes, or anything that requires balance.
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**I wish I had known- Our children don’t always enjoy themselves at events in large arenas. I felt it was one of my duties as a mom to make sure my son experienced Disney on Ice or Monster Trucks. The noise levels, stairs, height, and stadium seating terrified my child. Note: my son has outgrown this and is a huge event goer now.
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Communication- As a kind of parental speech therapy, you might discover that you need to alter the way you talk or the language you use while addressing your child. I’ve learned talking with my son has needed to be brought down to a very basic level. For instance, my son did not understand "painful" but he understands "hurt" or if he is told to "face" something it is confusing where as if you tell him to "look" at something he understands. Simplify, simplify, simplify.
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High tolerance to pain- My son seems to be able to endure pain more than I which has concerned me at times. I have researched this and from what I have found thus far, it isn’t necessarily a stronger endurance, but it actually takes longer for it to register. Our children do feel pain.
TIPS
Runner- Our children possess the ability to become expert escape artists. To help when my son was going through this phase, we installed locks at the tops of our doors that helped keep him from making his great getaway. This solution alone was not enough so we also installed wireless doorbells on all outside doors. This way an alarm would go off whenever Houdini tried to make a sneaky escape. To triple up on security, it is helpful to get to know your neighbors as they may become your ally in capturing your child.
**I wish I had known- Even when we aren't aware of it, our children are perceptive and pick up things from us. Note: Kitchen stools make for great ladders which unfortunately also pose a safety risk.
Blood draws- Our children tend to have stubborn veins that try to hide. Drinking a lot of water prior to exams helps. (Note: This tip is not limited to only those who have Down syndrome)
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**I wish I had known- It would have saved my son from being poked relentlessly. I'm grateful to the nurse who finally shared this tip with me.
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Medication- Pills can be hard to swallow for anyone. Getting someone with special needs to swallow a pill may be as hard as herding a cat.
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**I wish I had known- After numerous frustrating incidents that left us both gagging, I asked my local pharmacist if I could purchase the antibiotics and medication in liquid form. This worked most of the time. Fortunately, I was able to get Tylenol and Ibuprofen in adult dosage in liquid form which happened to also come in a larger volume. I don’t know if working with your local pharmacist is still an option, but it doesn’t hurt to ask. As a side note, my son has since learned to swallow pills, even the big horse pills. Yay!!! As with everything else, it just took time and patience.
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Unusual smelly gas or bowel movements- a result of not chewing food or eating food too fast (this is not necessarily limited to persons with Down syndrome or other special needs)
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**I wish I had known- I would have had my son get in the habit of putting his utensils down after each bite which would get him in the habit of eating slower.
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-HOUSEHOLD TIPS
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With guidance, practice and a lot of patience, your child will be able to care for themselves, cook for themselves, and even help with household responsibilities.
When teaching your child what certain household appliances are and how they are used, I would advise using all names associated with them to help avoid confusion and/or frustration. For instance, a fridge is also known as a refrigerator and a washing machine may also be called a washer. Some things may not always be in your home, for instance, a bathroom which is also called a restroom.
Post-it notes on all appliances work well until your child understands what they are and how they function. This doubles as a great conversation piece when you have guests over.
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As I taught my son to do his laundry, I realized I needed to do the same with laundry supplies. Instead of calling them Tide and Downy, I found I needed to refer to them as laundry detergent/soap and fabric softener since there are several brands of both.
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-GROOMING TIPS
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The bathroom is one place where my son does a lot of self-talk so he is easily distracted which interferes and extends the process, especially as he has gotten older. One day I finally had an ‘aha’ moment and put his daily grooming products in a bin set out on the counter that holds everything he needs, including toiletries, glasses, and hearing aid supplies. This visual helps him remember all of the steps for grooming each day. This simple tip has helped with this daily routine and saved him from being nagged by Mom.
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Another seemingly silly tip, the shampoo and body wash for his shower are marked in bold letters with a sharpie. Otherwise, shampoo may be used for body wash and vice versa. (Sidenote-Sharpies have become my best friend)
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To help teach him accountability, extra supplies of his toiletries are stored where he knows where to go when he runs out. Otherwise, he gets creative. Axe body spray does not double as deodorant, especially when our kiddos tend to have sensitive skin. I have a reminder set up for me to check supplies weekly to make sure everything is stocked, otherwise, I am responsible for his creativity.
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-FOOD TIPS
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To keep my son from overindulging in things he shouldn’t eat, we chose a spot in the fridge and pantry/cupboard that is specific for him and then filled it with healthy snacks he likes. Having him help in the process of selecting these snacks made the idea more effective while having his own snack spot made him feel special. This has helped control his snacking…most of the time (now me on the other hand, that’s another story).
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Brain freeze- Don’t be surprised if ice cream or other cold treats are consumed more quickly than you could ever dream of. The roof of our children’s mouths is so deep, it makes it almost impossible for cold foods to cause them to suffer from brain freeze. My son can eat ice cream faster than anyone I know. My son can also eat anything that is spicy. I’ve yet to figure out if this has anything to do with it.
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Making meals- Teaching my son to make himself meals is one area where I’ve really had to think outside the box and look for ways to simplify the process. For instance, to prevent my kitchen from becoming a slimy mess from butter, cream cheese, peanut butter, mayonnaise, and anything else that needs to be spread, I found an extra wide plastic spreader online that my son uses for making his toast/bagels/sandwiches, etc. This has made meal prep easier for his chubby fingers. On the flip side, slimy messes provide opportunities for teaching clean up.
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My son’s favorite breakfast meal is frozen waffles however, they would get crucified whenever he applied the butter. I found a spray butter that works great and no Eggos have been harmed since. Other condiments like mayonnaise and sour cream can also be found in these forms. We get so used to buying what we are used to, that we don't always see options that are available and may be easier for our kids to use.
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TOOLS
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Preparing for your child to stay home alone- SCARY right?? We installed cameras inside our home so that we could periodically check in on him. This gave this mama some much-needed peace of mind. We also had a list of phone numbers placed where he could see them and did periodic safety drills. I researched and found videos on YouTube that showed home invasions and fires so he would understand the importance of safety. Of course, I searched for those that were not too frightening or violent. These visuals helped him to understand the reason for our rules.
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Supplemental Security Income or SSI- our children automatically qualify for this at 18 years of age. You may also be approved to receive funds when they are younger. Keep in mind this is funded by the government and there are strict guidelines they follow. If your income changes at any time, you may be required to pay back what you received. I recommend researching the laws or contacting a legal representative for any questions. Ideally, I would suggest waiting until they are of age to apply for this to avoid any financial surprises.
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Legal Guardianship- Not required but it is something our family has chosen to do to avoid any possible conflicts with medical appointments/procedures. Once our children become adults, technically they have a say in any medical attention they may need. As an example, when doctors call for my son, they are hesitant to give me information because he is an adult. It has helped to be able to share that I’m his legal guardian so that I can be involved. Some individuals function at a level where they can speak up for themselves so guardianship would not be necessary. It is best to do what works best for your family.
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Obtaining guardianship involves going before a judge. Parents are not required to retain an attorney, but our children need to have representation. This is fairly inexpensive and worth it should you decide to pursue this.
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Individualized Education Plan or IEP- I will not lie, this was always a difficult process for me. I think I cried as I left every single meeting. I would arrive feeling like my child was doing well and leave an emotional mess after hearing how he had tested. Here’s the thing, we want our children to be doing great, but the system has to report otherwise for them to get certain services which can be difficult to hear. I finally had to grow a thick skin and go into all of our meetings with the intent to advocate for my child and not take to heart whatever was written on paper. The bottom line, you will know your child better than anyone or any test! Don’t ever forget that. I would recommend getting a parent advocate in your area or at least speaking to one before your meetings. Remember everyone involved should have the child’s best interest at heart. They are your allies so if needed, remind everyone that you are a team and you need to work together toward a common vision.
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Inclusion- When it came to school I pursued and pushed for inclusion for my son. Then one day I had to put myself in his shoes and think what would work best for me when it came to learning. In our state classrooms can have up to 35-40 students and funding wasn’t available for him to have a one-on-one aid. Ultimately, I realized he was learning more academically in his cluster/resource setting and that was important to me. I had him mainstreamed for all other classes such as gym, art, workshop etc. You know your child, advocate for what you feel is best for them.
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When it came to sports, my son loved participating in different outdoor activities so I would sign him up on teams that were for non-disabled. Sometimes this did not go over well, and I was told “There were teams for people like him”. Again, I knew my child and what was best for him and chose to put him where I felt he needed to be. For those coaches who were not as open-minded about it, I accepted their challenge, and it became my destiny to teach the team the awesome responsibility they had to become my son’s teacher. Kids love to feel special or needed so for those coaches who had problems, it was the team who helped my son excel in the sport.
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Finding a Doctor- My son had an amazing pediatrician who happened to have a daughter with Down syndrome. He became not only my son’s physician but my mentor as well. The day he decided to retire was not my favorite day. But as they say, all good things must come to an end. This put me on a quest to find a new doctor for my son who was now an adult. In addition to posting my question on social media, I also did some research. After reading reviews other patients had left, I created a list of possibilities and called several in our area and talked with their nurses asking questions like what is their experience with Down syndrome and how many patients do they have. This process was frustrating because in our area there are no doctors or clinics specific to Down syndrome, but with patience, we finally found the one. Remember, you know your child best and you are their advocate. You do not have to settle for anything when it comes to caring for them.
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Stranger Danger- To keep it simple, at home our son does not answer the door…period! Due to the increasing number of solicitors, he follows this rule to this day.
He knows to disregard any number on his cell phone that is not programmed or is an unknown caller.
As with any parent, I have been terrified of a stranger taking advantage of my son. As he started to go through puberty, we explained his body was his and only two people were allowed to touch him, his doctor and himself. He does know he should make his parents aware of anything different happening with his body so we can call his doctor.
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Vacations- I have written my phone number in Sharpie on his arm. NOT his name. Sadly, kids will trust people if they call them by name. (This is a good tip for kids who are not differently abled). You can also buy custom shirts nowadays that have QR codes put on them. GREAT idea. Also, take a picture of them each morning so you have a recent photo of what they are wearing.
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Public restrooms- Because of my son’s very friendly disposition, in a crowded location, we still scope out the bathroom before allowing him to enter for two reasons, to remind him not to talk to strangers and to make sure the bathroom stall is stocked with TP. Nobody likes to be stuck in that awkward situation.
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Speaking of the bathroom- My son does not seem to have the sensation of needing to pee. He does not seem to feel the urge to go when he wakes up each morning and will go all day without using the restroom. Now that he’s older I worry about him having bladder issues so with some hesitation I resorted to setting up an alarm on his phone to remind him to go…which makes for interesting conversations when it goes off. In talking with other moms, they experience the same thing with their children.
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Transitioning into adulthood- Just like any child, our children will change as they grow. My dreams and goals for my son have had to shift from what I initially planned when I left the hospital, new babe in arms. This shift was hard for me to accept at first because I felt like I may have failed him. I now know that’s not true. My son is an amazing human who just does things differently. He does not hold a job where he works for an employer, but he is working with me on a special project. I keep him busy doing other things as well. I have found adult programs we utilize that keep him busy and productive. He’s rarely home. What I’m trying to say is, don’t be discouraged or hard on yourself if YOUR dreams are not met. Focus more on helping them live a happy life doing what makes them happy and fulfills their dreams.
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This concludes my thoughts on things I wish I had known and hope that you find some of this information helpful. I acknowledge that some of my notes may seem silly to have to put in writing. Truthfully, I am convinced that in some areas my son is a genius but unable to communicate it, and there are many areas, many listed here, where I’ve had to learn to simplify for both him and I. I hope I have conveyed this.
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If you have any questions for me, I invite you to reach out to me.
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Wendy~