A couple of weeks ago I described myself to a friend as battle weary. That day, something that I usually could have let roll off my back just really got to me. It felt like much bigger of an issue than it really was. In the big scheme of things, it was just a little thing. But that day I just didn’t cope with it well. I just felt tired of coping.
I’ve been a mama for almost 23 years now. And a mama to a child with special needs for almost 16. I recognized the feeling. That feeling of sadness that I knew was out of proportion to the event that set it off. I’ve learned to recognize the feeling and I’ve learned what usually helps me to deal with it.
You’ve heard the phrase, “the straw that broke the camel’s back”. That’s almost always the kind of thing that throws me over the edge. A normal everyday stressor that I don’t react to in my normal way.It may be related to something I’ve been dealing with for a long time or it may be that I feel I’ve been dealing with a lot of things for a long time.
Tired of trying to figure out why my child’s hair is falling out. Well, I know it’s autoimmune but I mean tired of trying to find time and mental energy to research one more thing. Tired of trying to keep Jessie from calling people more often than they want her to. Tired of worrying about how much tv/youtube Jessie watches while I tend to my responsibilities. Tired of trying to figure out what really is important to teach her in our homeschool.
Tired. Just tired. Physically too, but mostly mentally. Just so tired of fighting for balance in so many areas. Battle weary.On those days it all just feels like I’ve been fighting a lot of things for a long time. And something happens that feels like the straw that broke the camel’s back. Like for just a short time I can’t fight anymore.
I have learned that when I feel this way I need to give myself a break.
I can’t usually take a break physically but I mentally take a break. I allow myself to not feel guilty about not dealing well with all the things that are competing for my attention. I allow myself to feel sad about whatever is bothering me. I remind myself that all those things will be there for me to figure out in a few days. I allow myself to do less than what is my best in all those mentally exhausting areas briefly while I let my brain take a rest.
Usually, I am better in a day or two. Then I can think about all those things without wanting to cry.
I’m back to feeling like Down syndrome is just a thing to adjust to. And God will guide us through. He always has and always will.
Rest is biblical. Sometimes the need for rest is physical and sometimes the rest we need is mental. At least for me it is. Surely I can’t be the only one.
We put such pressure on ourselves to do all the things well. Is that realistic? Or healthy?
Mama, when you’re battle weary, allow yourself to take just a little break so that you can be fit to deal with it all again. Whatever the issues, they didn’t get where they are in a day and they aren’t gonna get resolved in a day.
Allow yourself to not feel guilty for taking a couple of mental health days, where you might let your kid off the hook for something that really needs to be dealt with. You will deal with it; just not today.
Maybe you need to paint a room or do a DIY or craft project? Maybe you need to binge watch Netflix (for a day not a year :)) and not feel guilty that your kid is watching tv while you’re doing those things. Or read a book all day and let the kids eat whatever they can get for themselves? Whatever is your thing, maybe for a couple of days it isn’t selfish; maybe it’s the thing that helps you get back to the place where you can give again.
I may not be ready to tackle all the things in a couple of days, but when I give myself permission to not deal with them temporarily, they usually feel like things I can deal with again soon.
Today I’m good. But that day a couple of weeks ago is still fresh enough in my memory that I’m crying as I write this. I’m not going to feel guilty or weak for having that moment of weakness and neither should you.
You can be strong and not be strong every minute. All parenting, and even more so special needs parenting, is a marathon, not a sprint. I’m convinced that letting yourself be weak for a moment so you can regroup can help you be better equipped to get back in the battle another day.
Battle weary mama, I know how you feel and I’m praying for you.
Jessie had wanted a phone for a year or two. It just wasn’t affordable for us to get her a phone and she was always with a trusted adult so she didn’t truly need one. There had been a few situations that made me think it would benefit us if she had one, but it wasn’t a necessity.
Finally, when I decided it was time for an upgrade for me, we were able to replace the battery in my old one, an iphone 5c. By the time we found out that, yes, you can replace an iphone battery, I already had my heart set on the Iphone 7 plus. Cause, I can see it really well with the larger screen. The camera also makes it easy for me to take great photos for the blog. Since she is using a phone we already owned we just pay $20 for her phone line per month.
I’m sharing our experience here in case it might help someone else. This isn’t meant to be a how to or even suggesting what you should or shouldn’t do, just sharing what is and isn’t working for us.
Restrictions and Rules for $ and Data Usage
I set up restrictions on the phone so that she can’t make purchases or download apps without me putting in the password. I learned this from a Kindle experience 🙂
Data Usage: We all share a data plan. Jessie knows that she can’t play any videos, FaceTime or video chat unless we are on wifi. It hasn’t been difficult to teach her when we are on wifi. She knows we are when at home she usually has wifi and if we visit a friend she knows that the first time she has to get hooked up with the password for wifi.
Jessie knows what she is allowed to do when she doesn’t have wifi. She can use Facebook , play her WWE SuperCard game (minimal data usage on both of those) or watch a downloaded video on Netflix. Only once has she purposely watched a video that wasn’t a download (thankfully, I caught on before it was costly) when she knew she shouldn’t.
If she were to break the rules she would temporarily lose her phone to help her remember. She LOVES having her phone. She will do what it takes to keep it.
Facebook: Jessie doesn’t accept FB friend requests without asking me first. She had a FB long before she had a phone and has done well at abiding by this rule. Only once did she not ask first and then she confessed.
Video Chatting: She does video chat in her room sometimes, mostly for my convenience. Sometimes she and her friends talk a long time and I’ve said before I kinda crave peace and quiet. I usually know who she is talking to. Sometimes when I’m listening from another room and can’t tell who, I will come into the room (like I have laundry or something) or text her to ask her.
I know well the people that she is chatting with, except in one group chat group she has, which I also know to be harmless. Still, I make sure I am in and out occasionally. I’m not saying she never will, but she doesn’t currently regularly video chat or FaceTime with any males except brother or daddy.
I randomly and periodically look through her phone and fb messages. Not really because I suspect any wrong doing, but to see if she is calling adults more frequently than she should and being an annoyance in that way. Safety isn’t my primary reason, but I like knowing who she is communicating with. Sometimes when I am getting her hooked up to CPAP and she has just set her phone alarm I will give it a quick glance.
Pros: Things I Think Are Good About Jessie Having a Phone
There are several ways that having a phone has helped Jessie have greater independence.
Using the phone alarm clock is a big one! Jessie right away started using her phone for an alarm clock. We homeschool and we had gone back and forth between me waking her in the mornings or her sleeping until she woke up. Her using the alarm did several things.
She quickly learned it was always AM when during the morning times that she set her alarm for! We had talked and talked about this. When she used the alarm for herself it quickly clicked.
She felt more grown up. This helped her more happily take personal responsibility in other areas.
On a day when we have nowhere to be, she turns her alarm off and lays in bed and watches a video on her phone for a few minutes as she wakes up. I don’t have to worry about her falling back asleep like when I would wake her. Like her mama, when there isn’t a rush to be somewhere she likes to lay in bed a minute and wake up. Watching a video means she doesn’t fall back asleep.
When Jessie goes to bed we turn the ringer OFF and ringer volume UP. This allows her alarm clock to ring and be heard, but no phone calls or texts from earlier rising friends will wake her up. If I need to text her something to see when she wakes up, it will be there waiting for her without waking her up.
This next pro on the list might seem silly to some, but it’s genuinely helpful for us. Ya’ll know, sometimes it takes SO much to get out the door, especially if you’re going multiple places before you return home. I’m getting myself ready, gathering things to take, taking the dogs outside multiple times, putting the trash where the big dog can’t get it and kenneling the smaller dog. Shutting bedroom doors to keep dog out of there while we’re gone. Making sure the door is shut to the office so the dog can’t get to the litter box….doesn’t that make you feel stressed just reading it? I’m sure you can relate.
If I’m not sure if Jessie is indeed getting ready or has done the things she needs to do, I can text her to turn off the video or to ask her if she has brushed her teeth etc., or call her to give instructions while I continue to run around like a crazy woman. Before phone, I was going to her room multiple times sometimes to she if she is on track and remembering everything she needs to do, causing me to run behind in what I needed to do. Maybe I should have a better system, but this post isn’t about that 🙂
When Jessie has woken up in the night and needed me in the bathroom she was able to call me. She also called me when it was storming. I usually sleep with her when it storms. Maybe we eventually won’t, but it doesn’t seem a big deal right now to me. She has gone from sleeping full time with her sister (who got married) to me sleeping with her on Friday nights and when it’s thundering loud enough to wake her over the sound of her box fan. The benefit to her calling was she never disconnected her CPAP, I just went and crawled in bed with her.
She has friends with DS or other disabilities that she has been able to connect with more and deepen friendships with now that she has a phone. She uses FaceTime, videochats on FB, and really enjoys doing this with her friends. Sometimes they are talking to each other and doing other things at the same time. I can tell that this has enriched her friendships and her life.
We haven’t had a home phone in a couple of years. When Jessie wakes up I don’t have to worry about leaving a note, or worry if she will find the note or be afraid that she’s alone. I like to sit in the backyard with my coffee in the mornings. If she can’t find me she calls or texts; no anxiety for either of us. Sometimes I will text her while she’s sleeping to let her know I’m outside if she wakes up.
Spelling: In the past, Jessie texted some with my phone but she texts more now that she has her own. Texting helps her with spelling, and because it predicts what she’s trying to say, she is able to communicate with words she can’t fully spell without getting too frustrated. Sometimes she will ask me how to spell something and then after the first letters she will say, “I got it.”
We have gone back to writing chores on the white board on the refrigerator. On her own she came up with the idea that she wanted to take a picture of the list (maybe she’s seen me do this with the grocery list?) and carries it around with her till she’s finished, then comes back and wipes them off the white board.
When Jessie particpates in activities away from me or visits with a friend it is easy for me to stay in contact with her or check on her without having to bother the adults in charge. I can text her to ask if she’s having a good time, let her know when I’m about to pick her up, etc. Knowing we have a way to reach each other easily gives us both peace of mind.
I can only think of two Cons, but they are significant issues each of them.
Jessie LOVES to talk on the phone and to video chat. It has been hard to get across to Jessie that adults are busy with work and other things. I don’t want her to make a nuisance of herself. Defining how often, during what hours and who she can call has been a major challenge. Finally, on one occasion our conversation made her cry and on a 2nd occasion she cried and lost her phone for a few hours. She hasn’t done the same thing since, but it’s still a struggle.
Jessie spends a LOT of time on her phone. If she’s not talking, she’s watching YouTube or TV, playing a game, she even uses it to play music when showering or cleaning her room. None of the things she does are bad, but it’s hard to have her be willing to do anything without complaining if it involves her being disconnected from her phone for long. Ahhh… life with teenagers.
Caring for the Phone
We immediately bought Jessie an Otterbox Defender case. It does a good job of protecting her phone from falls. Because it is rubbery and not slippery she hasn’t really had an issue with dropping it. She has a few times gotten a couple of drops of water (after handwashing I think) on the screen inside the case. I had to remove the case to dry it but the phone was fine, it was just on the surface.
Jessie started carrying a cross body purse to make it easier to keep up with her phone and her money anytime she is away from home without mama. I think she is less likely to leave it sitting on a shelf when shopping or a restaurant table if she carries her purse. So far, so good. She uses her phone a lot so that helps her keep up with it too. When I’m with her she puts it in my purse when she doesn’t want to carry it.
Well, those are all my many wordy thoughts on how Jessie getting an iphone has impacted our lives. Hope it’s helpful!
Like I talked about in a recent post, a very high percentage of people with Down syndrome have sleep apnea. In that blog post I referenced several links with research related to DS and apnea. You can go here to read the original post on sleep apnea and get your free printables with helpful tips for the actual sleep study.
I’ve talked with 3 friends in the last 2 weeks whose adult children with DS recently had sleep studies. All three have severe sleep apnea. One of the moms said she had not noticed any obvious signs of apnea. Her daughter stopped breathing 35 times an hour. Another dad had noticed that his adult son was restless and difficult to share a bed with when they were in a hotel recently. That was the only noticeable symptom. In his sleep study he stopped breathing 86 times per hour. That’s more than once per minute!
I recently had the opportunity to speak to the head of the department at the hospital where Jessie had her sleep study. He said 100% of the people with Down syndrome that they have done studies on so far have had sleep apnea.One hundred percent.
When Jessie was diagnosed with sleep apnea her index was in the mild to moderate range. 15 times per hour is the beginning of the moderate range. While she was just barely below the range of CPAP being an a necessity, the pulmonologist was certain that in time her apnea would get worse without treatment so we decided to go ahead. She already has a lower energy level and requires a lot of sleep so we wanted to do all we can to ensure she gets as good a quality of sleep as possible.
Although they are most often referred to as CPAP (continuous positive airway pressure), most often today APAP (automatic positive airway pressure) is what is prescribed. You can read more here about a comparison of the two types of machines. The amount of pressure forcing the air is automatically changing as it senses the need. BiPap has two pressure settings, one for inhalation and one for exhalation and is used for patients with higher pressure strengths or low oxygen levels. You can read here about the difference between CPAP and BiPap.
Considerations in Choosing a Mask:
My husband was non compliant with his CPAP for years. He tried several other options first, resisting the idea of a full face mask, but in the end that is what has been much more comfortable for him. He assumed it would be the most bothersome because it covers the most area, but resorted to trying it after he couldn’t stick with other options. He sometimes has issues breathing through his nose and when using a full face mask that is a non issue.
Because of his experience, I asked the doctor about Jessie and told him I sometimes noticed that in the morning her lips were dry from mouth breathing. If you have a sometimes mouth-breather you will want to go with a full face mask.
It was recommended to us that if you have difficulty with fit and comfort of your mask try another. Give it a little time, but we were encouraged to find what worked during the early period while the machine was still a rental.
Getting Used to CPAP/APAP/Bipap Therapy
It took Jessie about 2 weeks to adjust to wearing her APAP machine. She was used to sleeping with her sister. She, at that point, had never slept alone, so I knew that I would need to sleep with her to get her used to sleeping with the mask on her face. She had seen her daddy sleep with his mask so she was familiar with what it looked like. She had told me before the sleep study that she didn’t want a mask to sleep with.
There are several things that take some getting used to. Initially, any one of these might wake you or cause you to have trouble falling asleep. Jessie does not have a lot of sensory issues, but some. She did really well with her APAP, but for kids who have some sensory issues, there is a lot of sensory input going on.
Feeling/awareness of the mask on your face
Feeling the straps etc (all over your head), how it feels on your hair
Feeling the hose moving when you roll over
Getting used to breathing out with air blowing in your face
Can I just go ahead and say here though, the only way to get used to it, is to actually wear it enough to get used to it.
I wanted to know what it felt like, so I would have a better idea what I was expecting Jessie to do. I put the mask on my face. I immediately REALLY didn’t like trying to exhale with air being forced back at me. And hers isn’t set at a high pressure setting, this would be even more bothersome at a higher pressure setting. I knew she needed to wear it, but feeling it for myself made me more patient with her in helping her work through it.
Our insurance (and I think many insurances work this way today) wasn’t going to pay their portion for the machine until they saw that she was consistently wearing it. The machine would be considered a rental until she met their requirements of wearing it at least 6 hours a night for “most” of 30 days in a row. This was an incentive for me to help her get off to a good start. In the long run I’m kind of glad. It forced us to be consistent.
I put Jessie in bed with me. I can’t sleep in the middle, so that meant I had to sleep with the hose to her machine laying across my face for the better part of two weeks. That wasn’t super fun. I learned later about this cord bundler that could have helped with that, but I didn’t know about it then.
I would start Jessie off with the mask on and lay with her and talk with her for a for minutes to help her relax. Initially, it took her a good few minutes to go to sleep. She would startle awake sometimes during the night. I would mostly try to talk to her to soothe her back to sleep without removing the mask. If she needed a break I would take it off for a couple of minutes and put it right back on. The first night she made it several hours with the mask on. The first 2-3 nights were when she woke the most. She got more used to having it there each night that went by.
I didn’t want Jessie to be in another room where she could remove the mask during the night without me knowing until she was very comfortable wearing it so that she would be less likely to. After about a week she was pretty comfortable with it and at about 2 weeks she was doing excellent.
The APAP machine came with a modem in it that enabled the pharmacy (where it was rented from), the insurance company, and her doctor to be able to tell how long Jessie wore the APAP, how well the mask fit (if there was leakage out of the mask) and how many times she was experiencing episodes of apnea. I was able to download an app on my phone to access that same information. It was very helpful for me to know once I wasn’t sleeping with her how long she kept the mask on. I didn’t have to rely on her to know or be truthful 🙂
The first night that I put her back in Jordan’s room, Jordan slept elsewhere and I slept with Jessie so that she was exactly in the spot she would typically sleep in. I only slept there with her one or two nights.
After that initial time, there were occasionally times that Jessie would remove her mask during the night. I would ask her why and it was usually something like that air had been leaking from the mask and blowing in her eye. Sometimes either she couldn’t find the words to explain or she just wanted to take it off.
Even when there were legitimate reasons for taking her mask off, I stressed to her how important it was for us to fix the problems so that she could keep her mask on all night every night. There was a clock she could see beside her bed. Initially, I would tell her she couldn’t take the mask off before a certain set time, and most of the time she wouldn’t. Now, she rarely ever takes it off before she’s getting up for the day.
It takes a while to get the straps adjusted to where there is less leakage. Once I found the right spot I marked the strap with permanent marker so we could easily set it to the right spot each night. It’s also helpful to wash the rubbery part of the face mask every night or every other night with a baby wipe. This helps keep the facial oils from causing the mask to slip out of place.
I was worried that Jessie would break one of the side clips if she took it off that way. We didn’t want to have to readjust ALL the straps every night so she just un-straps the one velcro strap you see marked with red marker. Everything else stays set. At bedtime, I slip the mask on and tighten just that one strap. Easy peasy.
Those Pesky Cords
One of my friends uses this Command Cord Bundler to keep the hose off her son’s body when rolling over. I bought one of these for Jessie, but she had already gotten used to her APAP and preferred it without this so we don’t use it. I’ve been meaning to try the additional hook (came with 2) to see if my husband would like it.
Compliance or Non-Compliance Becomes a Habit
Now, when I put her mask on, she is relaxed and it’s just part of the routine like brushing your teeth. We usually talk for a minute first, because once we put the mask on it’s hard to understand anything she says. Every third day I wash out the part that holds the water and refill it. The other two nights I just add distilled water as needed.
I’ve talked to a couple of parents who haven’t achieved consistency with their child wearing the CPAP every night. Honestly, just like with any other behavior, the more you let them get away with not wearing it, the more they establish non-compliance with CPAP as a habit. The CPAP is important for their health, therefore it is non-negotiable.
Try to solve any issues they have with it bothering them the best you can and then require it of them and they will comply. As Dr. Phil would say, find out what their currency is (what you have control over that they want) and use that as a motivator. Whether it be tv time, Ipad, etc. (choose one not all so they are motivated not discouraged) they only get that thing if they keep their CPAP on a certain amount of hours per night. The amount of hours you would expect at first would be less and then longer as they get more used to it and tolerate it better.
Clearly, I’m not saying throw them in their room and say, “Keep it on or else!” I am saying, find out what the issues are the best you can, work to solve them and require that they wear it. Quality sleep is so important for their health.
After Jessie had been wearing it a while I didn’t worry about it if she took off the mask during the night one night.But if she did it two nights in a row I was quick to address it so it couldn’t become a habit.
I Really Hope This Helps You!
I really hope that sharing our story and tips we learned along the way will be helpful! Whatever the topic I’m writing about, I’m always hoping that something I’ve learned along the way will be of help to someone else. I hope you have a smooth and mostly-anxiety-free transition to using APAP!
If you have any tips to add that I’ve missed, I would be happy to add them to the post so moms and dads have the best chance at getting this whole CPAP thing to work for them. If this is helpful to you will you please let me know? And share it with your friends who have a child with Down syndrome! We really need to get the word out how important it is to have a sleep study and do what we can to make the process as painless as is possible!
While the incidence of sleep apnea in people with Down syndrome is much higher than the general population, I find that this information isn’t well known yet in much of the Down syndrome community. From NDSS (National Down Syndrome Society), “There is a 50-100% incidence of obstructive sleep apnea in individuals with Down Syndrome, with almost 60% of children with Down syndrome having abnormal sleep studies by age 3.5 – 4 years. The overall incidence of obstructive sleep apnea increases as children grow older.” Those are pretty startling statistics to me.
Most everyone today is aware of what sleep apnea is. Most everyone knows the health effects of having undiagnosed sleep apnea. We all know someone who uses a CPAP machine to sleep. What doesn’t seem to be well known yet is just how common sleep apnea is in persons with Down syndrome.
While I’ve read that some disagree, Jessie’s pulmonologist (the doctor who read her sleep study results and explained them to me) said he believes that 100% of people with Down syndrome will develop sleep apnea over the course of their life time. Wow.
In many cases, and it was true in ours, there are no obvious signs of sleep apnea. I didn’t have any reason to suspect Jessie had sleep apnea. I heard a speaker at a conference say it was now recommended for all people with DS to have a sleep study by age 4, so I made the appointment. I wasn’t in a hurry about it because I KNEW the common signs of apnea and Jessie didn’t have them. Jessie was much older than the recommended age because this just wasn’t on my radar at all. I try to keep up with health recommendations and in general with the info that is available about Down syndrome. This recommendation hasn’t been well circulated yet.
I’m familiar with what sleep apnea most commonly looks like but Jessie wasn’t having any of those obvious symptoms. My husband has sleep apnea and my son did when he was 3 and his tonsils were large, and Jessie did too when her adenoids were huge. No snoring, no obvious stopping of breathing. None of the sitting up and odd sleep positions like she had prior to having her adenoids removed. She did however wake up fairly often during the night. That alone just didn’t ring any bells for me.
At a regular check up I mentioned it to our pediatrician. He scheduled her for a sleep study. Although many of the articles I read recommend seeing an ENT as a first step, Jessie had already had her adenoids removed and her tonsils were not enlarged, so we went straight to the sleep study. Dr. Brown, our pediatrician, said he felt confident that our local hospital could do a good sleep study for Jessie; he assured me he felt very comfortable and confident with it. He chose which doctor he wanted to read the results, a pulmonologist that he knew read many sleep studies specifically for children since we were not going to a Children’s Hospital.
With no obvious sleep apnea symptoms, when she had a sleep study she was diagnosed with mild to moderate sleep apnea. One or two points below the moderate. I was a little surprised.
Jessie was very cooperative with being hooked up to all the wires and as long as I was right there with her, she didn’t mind too much sleeping there and being in a different place. Even though it was in the hospital, the sleep studies are done in a room that seems more like a bedroom, in a regular bed not a hospital bed. We had been talking about it for a couple of days so she was familiar with what we were going to do. Before going to a sleep study I would recommend telling or showing pictures of someone hooked up to all the wires so your child has an idea what to expect.
I had explained to Jessie that they would attach little sticky things to her hair, her head, and chest to see how she was breathing when she was asleep. She was a little anxious before we got there, but when we arrived we dealt primarily with just one person and she was sweet and friendly and in a few minutes Jessie felt more relaxed. She saw that it was just as I had explained it to her. Knowing what to expect definitely made it easier for her.
Every environment is different I’m sure, but at Flowers Hospital where Jessie had her overnight study, they allowed me to sleep in the bed with Jessie because she was used to sleeping with her sister. She would not have been able to go to sleep and stay asleep alone so they allowed me to sleep with her. It is their preference that the parent sleep separately in the room if they need to be there, so that if the parent snores, etc it doesn’t interfere/confuse them as to who is snoring.
After Jessie’s sleep study when we saw her pediatrician, he asked if we wanted to be sent straight to a CPAP provider or if we wanted to consult with the pulmonologist that had read her sleep study so that it could be explained to me. I chose to consult with the pulmonologist. I’m so glad I did. He was able to give me a lot more information and I highly recommend speaking directly with whichever doctor can give you this info. Her pediatrician was able to give me some basic numbers and facts, but this isn’t his specialty. The pulmonologist gave me a good explanation of what was normal and what Jessie’s results were.
When my husband and son had sleep studies it was ordered and read by a neurologist. Jessie’s pulmonologist and Jay’s neurologist were both listed in the category of “Sleep Medicine”.
Dr. Sexton, our Pulmonologist, explained that Jessie’s apnea wasn’t severe enough that we had to start CPAP right away. He also told us that he was certain that over time her apnea would get worse and would later fall into the range requiring CPAP.
Jessie has always required a lot of sleep. She feels best when she gets 10-12 hours. She is on thyroid medicine for hypothyroid and still has a low energy level. I knew that if there was a chance that CPAP would make her feel better we wanted to start right away. I didn’t see any real benefit to waiting. She was going to have to eventually get used to the CPAP, so might as well do it now.
Jessie does still have a lower energy level than people without Down syndrome and I think maybe lower than some with Down syndrome. I can tell that she does feel more rested in the mornings since using the CPAP.
The two HUGE differences though are that she falls asleep much more quickly and stays asleep all night most nights. Before CPAP, if no one was in the bed with her she might lay there for an hour or more even if she was really tired. Now, she relaxes right away as soon as the mask is put on her face and goes to sleep within a few minutes.
It used to be even when sleeping with her sister, Jessie would tell me things the next morning that let me know she was waking up at night. She doesn’t do that very often now. She sleeps much more soundly. She will still be woken by a storm or the cat wandering into her room (she won’t sleep with the door closed) but she sleeps so much better.
I read quite a few articles about Down syndrome and sleep apnea. Here are a couple of good links. This article from NDSS explains apnea as it pertains specifically to Down syndrome. This article by Sally Schott (the source of the NDSS article) and goes into a little more detail and makes this recommendation, “Sleep studies in children have different definitions and techniques of analysis compared to adult sleep studies. It is better to go to a pediatric sleep lab if possible because of these differences to insure correct data analysis of sleep study results. In addition, the sleep technicians at pediatric centers are more familiar with doing sleep studies on children who may repeatedly try to remove the multiple monitors that are used in a sleep study.”
If you would like to receive a printable story that you can read with your child, which includes the picture of Jessie all hooked up to help them better understand what to expect, sign up below. I have written a story for younger children (short, one page) and one for an older child/teen/adult (2 pages with photos). I will also send you a checklist of things to consider/ask in preparation for your appointment.
When explaining to Jessie what to expect at her sleep study I would have found it easier with photos. I hope the printables I created will help you! I would love your feedback to know if you find these helpful.
I find myself asking every person I know lately, “have they (your child) had a sleep study? Well, they need to, this is what I read….”
When I decided to start this blog I knew that I would want to blog about Down syndrome, but I also knew that I didn’t want my blog to be ONLY about Down syndrome. In my first blog post on this blog, I told how I have a love of home. I enjoy so much all that goes into making our house a home. I want to share DIY projects and some other of my favorite things. Like I wrote about here, Down syndrome doesn’t consume our thoughts as much as it did in the early days. Certainly, Down syndrome ranks high among topics I think about, study up on and care about. But, I have one child with Down syndrome and two “typical” (if there is such a thing!) children. If you have a child with a disability, you’ve certainly heard of the poem, “Welcome to Holland,” by Emily Perl Kingsley. If you aren’t familiar with it, you can read it here. In the poem, the author equates having a child with a disability to arriving in Holland when you had prepared for and boarded a flight to Italy.
Having been to Italy twice (Jordan and Evan) and then arriving in Holland (Jessie, who has Down syndrome), I feel like quite the world traveler. Even my two trips to Italy were quite different from each other. Each child requires something very different from you as a parent. I had been to Italy twice already when my flight landed in Holland.
My first trip to Italy landed me with a daughter. A daughter who fits the “first child” profile. She learned to read when she was four. A bit of a perfectionist, self motivated. We homeschooled, and as a teen, if we were busy and she got behind she would work on the weekend (without prompting) to catch up. In competitive gymnastics she perfected her already present self discipline. She is driven to achieve whatever she sets her mind to. She completed PTA (Physical Therapist Assistant) school and recently got married. Once she got her first “real” job as a PTA, she saved half ($10,000) for a down payment on a $20,000 car and then set the goal to pay the rest off in a year, and did it! Jordan is 22 now, and we have seen that Italy is great!
Then, off to Italy again. The sights we saw were different this trip. A boy this time. All boy. Ball was a favorite word when he was little. He wanted to marry me when he was 4. When he cried after a fall off a bike ramp (at 8 or 9) we knew to take him to the ER for an xray. He wasn’t as quick to learn to read as his older sister. He struggled in school. We felt pretty sure he had ADD, now, he feels sure he does too. He was diagnosed with a sleep disorder as a teen. As a teen there was the normal struggle as he found his way, feeling pulled between his desire to be a man worthy of respect, and his disdain at being bossed around by his mother. He has been working and paying his own way in college. He is so patient with his little sister, always. Evan is now 20, a strong, smart, compassionate, loyal, frugal :), young man worthy of our respect. Our second trip to Italy we saw different sights and again, found Italy to be great!
Ah, we arrived in Holland when Jordan was 7 and Evan, 5. I think the fact that we had already been travelling a while kept us from being quite so lost when we found ourselves there. It was frightening at first, but God had been preparing me to accept what He knew was coming. Right away, although it was scary to have arrived unexpectedly, we could see that there was beauty to be found in Holland. We found our way around and now can’t imagine how our lives would be different if we had gone back to Italy again. After the initial fear of being lost, and trying to figure out where we were and how to acclimate ourselves we decided to embrace and appreciate that we were in a new place, with beauty of its own. Sweet Jessie. Soft and squeezy. Funny. A picky eater. She loves to be understood when she speaks, but that requires more effort on our part. She has our same sense of humor. Loves to watch wrestling. Always keeping her calendar, anticipating the next activity or social event. So tender hearted. She can’t bear for us to be upset with her. She loves being a part of her “team”. Swim team, baseball team, gymnastics team. Holland is full of beautiful places, places that we feel richer to have experienced.
I have always said to each of my kids, “I’m so glad God gave you to me.” I say it to Jessie often when I tuck her in at night. And it’s so very true. He makes no mistakes.
If you’ve read my introductory post, here, then you know the first part of my life wasn’t the same home life that my kids have experienced. I’ve heard Dr. Phil say, “It is what it is”. Whatever it is, it is what it is. I think we are always better off to deal with whatever the truth is, rather than wishing it were different. It is a waste of time, precious, precious, time to linger wondering what if. There is always something to be grateful for, and we needlessly trade joy and peace when we fail to trust in the God that knew every day ordained for us before we were born. (Psalm 139:16)
So, do you see why I don’t only blog about Down syndrome? In addition to my trip to Holland, I’ve also been to Italy twice. Amidst those travels, we’ve built a home life in a small town with a couple of dogs, a cat, a pool, with a garden that I love in the back yard. I’ve shared my home and taken those trips with the ones I love best. What a journey it has been and continues to be.
I still remember every single thing about all the worries and fears I had when Jessie was a newborn. Thankfully, most of the things I was concerned with then, aren’t ongoing concerns for me now. I can hardly believe that she’s 15 now.
I wrote this letter when Jessie was 3, for our local Down syndrome group (F.R.I.E.N.D.S.) to be used in informational packets for new parents of a child with Down syndrome. I can remember so very clearly those first moments, the first days in the hospital. Watching intently, worriedly, for signs of heart trouble or intestinal blockage.
I remember being concerned for how Down syndrome was going to affect my older (then 5 and 7) children. Since my prior knowledge of DS was zero, I genuinely didn’t know if Jessie would feed herself (silly, I know now) or if we would be more confined to home, impacting Jordan and Evan’s ability to participate in their activities. As I began to learn about Down syndrome, some of my worst long term fears were quickly put to rest.
Although Jessie did indeed have 2 heart defects (VSD and ASD) and had open heart surgery at 3 months old, her heart has been completely healthy since then. She has had some Down syndrome related health issues, and has a lesser immune system than the average person, but she doesn’t have anything serious going on healthwise. For that we are very, very thankful.
I do realize that our everyday is affected by Down syndrome; but I don’t worry about Down syndrome all that much anymore. We have made adjustments that I don’t even think about much.
Jessie is on a swim team and takes gymnastics, both of which are Special Olympic sports. She plays Miracle League baseball. She is in a weekly special needs ballet and tap dance class. She attends a couple of morning day-time camps in the summer. She bowls, attends dances and went to the Prom last year.
When my other kids were 15, it wasn’t Special Olympics, but I was driving them to all kinds of activities too. The difference, is when they turned 16, they started driving themselves and I will continue to taxi Jessie. Being Jessie’s chauffeur gives me lots of opportunities to socialize with other moms whose kids have special needs, and that’s a really good thing.
Thankfully, I have a husband that has always prioritized, and been willing to make the necessary sacrifices for me to be home with the kids. Jessie benefits greatly from the physical and social activities, so I’m glad I’m able to be available to let her participate. Jay had hoped (before DS was in the equation) that I would one day return to work. One day several years ago I remember he looked at me and said, “You’re not ever going back to work, are you?” No, honey, I hope not. Our family needs for me to make a part time income. It is our hope now that this little blog, will, in time produce a part time income for our family.
From newborn to 6 years old or so, Jessie had ALL the therapies. Scheduling in all the PT, OT and speech while we had (and homeschooled!) two other kids, that DID rule our lives for a season. Last year Jessie had physical therapy for a few months and we may pick that up again from time to time. She has more significant balance issues than I see in most kids with DS. Even so, now my “big kids” as I called them for the longest time, now my “grown” kids, are doing their own things so it doesn’t seem such a big deal when Jessie needs something like that.
There were some difficult times in those early years. Sometimes other children didn’t accept Jessie and sometimes new goals just seemed so hard to achieve. They were a mix of unbelievable blessing and sometimes momentary heartbreak.
Jessie has the sweetest relationship with both her siblings. She is good for them and they are good to and good for her. I couldn’t wish for anything better. I can’t even begin to imagine who any of us would have been without having Jessie as part of our family. In good ways and hard ways, she has helped grow each of us into the people God intended for us to be.
Jessie grows more and more independent as time goes on. We are always working toward some type of goal of either personal independence or on housekeeping chores that she needs to know how to do. I posted about chores and routines we’re working on here. I know that she will continue to do more and more for herself. Even so, I think its most likely that she will always live with us. I am really okay with that. There is such focus in the Down syndrome community right now for people with Down syndrome to live independently (as in not with their families) that I don’t completely understand. From what I have seen, most of those with DS that live separately from their families, they need and receive support–it just comes from other adults–not from their family. Unless it becomes important to Jessie to beindependent from us, I don’t know why we would want other people to be her support system rather than those of us who know and love her best. That’s a deep and controversial subject 🙂 I homeschooled my typical children till they graduated high school. So, it’s probably not surprising I feel that way.
All of those things above, they don’t seem all that worrisome to me. Many things about our every day life are impacted by the fact that Jessie has Down syndrome, it just doesn’t seem like such a huge deal most of the time anymore. We are in a “sweet spot”. There are situations that occur that are temporarily upsetting, but for the most part our lives just go on, making the necessary accommodations and keepin’ on keepin’ on. It’s a good life we have.
The worry that continues to rock my world and causes me to pray often is worrying about Jessie if something happens to Jay and me. I think about that a lot. I struggle with living in a place of unhealthy fear. I know for sure that her siblings would take good care of her, but they aren’t her parents. I don’t want that responsibility for them, or the loss of her parents for her. That is the one thing where she is concerned that I have to continually recommit to God. I could drive myself pretty crazy with that one. Jay says that would be a short ride 🙂
Down syndrome affects every cell in Jessie’s body. That for sure changes some things. We make accommodations. We make adjustments. But on most days Down syndrome is just kinda normal to us now. It doesn’t rule our world anymore.
I’ve wanted to come up with a system for Jessie, to help her remember the things she needs to do each day without being reminded constantly. I want this for her, to increase her independence, and so she won’t feel nagged 🙂 And, I want this for me. I want to take these items off my list of things to remember; sometimes my brain just feels too full and weary of holding all the stuff mamas have to remember. It feels too, as if all day every day I’m telling her something to do. If I don’t, she spends WAY too much time watching videos on her Kindle while I’m busy with mom stuff. Coming up with a system has seemed complicated because I didn’t want to be tied down to certain chores always being on certain days. It’s confusing for Jessie if we’re making lots of adjustments to a chore chart. If for example we have a busy day, she wouldn’t easily make the adjustment to moving the chore to the next day. Or, if she gets comfortable with that, she will always want to move chores to the next day. This can be true of all children, but Down syndrome does seem to complicate the issue a bit.
So, for a while now, I’ve been trying to find a workable solution that would suit us both. We’ve been writing chores for the day on a white board on the refrigerator for a few months now. That has been working pretty well. She does whatever is written on the board, which might be updated 2-3 times a day. But, it didn’t help her remember to brush her teeth, or put away her wet swimsuit and towel after swim practice, or pick up her clothes off the bathroom floor after a shower. We had started the white board with those kinds of things on the list, but it got to be too much to rewrite every day. I am reminding her of daily tasks it seems all day long. She is entirely capable of taking care of all of those things, but puts them off unless they’re written down. She really likes to check things off a list. She also enjoys the knowledge that she’s taking care of her own business, like her siblings have done. Quite often, she and her daddy write silly, persnickety things on the white board to each other. Or she will write on the list that she wants Evan to take out the trash or Daddy, in this case,to clean his room.
For a couple of weeks I started making a list of everything I could think of that needed to be done every day. Jessie is involved in a lot of activities. Our schedule varies a good bit different days of the week depending on if Jessie has dance, swim team practice, gymnastics, baseball games etc. Rather than any set time, I divided the day into things that are part of a morning routine and an evening routine. The true “chores” that vary from day to day will be a separate list. Voila! This is what I’ve come up with. I created these documents in Word and was tickled with myself that I was able to figure out how to do the text box with her medicine reminders! We’re going to try this system for a while and then make adjustments as necessary.
I ordered this laminator weeks ago and feel like a kid with a new toy using it ! Since the checklists are laminated Jessie can cross things off the list with a dry erase marker as she does them. At the end of the day or the next morning we wipe it off and begin afresh. We’ve only been using it a few days, but its working well. Now, I just have to remind her to check her list a few times a day 😉 Hopefully, she will get this routine on her own soon.
On the chore list I circle items that she needs to do that day and she erases the circle or crosses them off when finished.
Its handy that there is an eraser on the end of the dry erase marker. I think I picked these up at Walmart. Jessie just told me ours are getting dry and that she wants some colored ones. I’m going to order these ( I have Amazon prime and don’t have to leave home to shop!) because she likes the colors and will enjoy using them.
I showed the checklists to Jessie and asked what she thought about them. She waved her hands to demonstrate that she was talking about everything on the list and said, “It’s boring.” Well, then. We must all do things we find boring. Boring is one of her favorite words right now. Even though she described it as boring, she was still excited to show Daddy her new charts.
I think chore charts, checklists, etc are also just ways to use everyday life to increase reading, vocabulary and independence. But, that’s a post for another day!
Hey y’all 🙂 I’ve started a new blog and wanted to tell you a little bit about the blog and about me. In introducing myself and my blog, I have decided to be very open and share some things, that honestly, not that many people know about me. Who I am today, what I cherish most, my perspective of home and family and even Down syndrome, is greatly influenced by past experiences. I think those past experiences give me a bit of a unique perspective. I know those experiences cause me to take notice of ordinary beauty in the every day that is so easy for us all to take for granted. My husband has many times said I wear rose colored glasses. I tell him it’s on purpose 🙂
Being a mother has been the greatest joy of my life. I love HOME, and I love being a stay at home mom. For many that have a love of home, they want to replicate the loving home they experienced as a child. For me, I have wanted to create for myself and my children the home I had longed for. I desired to have a changed family legacy. I desperately wanted my children to know and love God, and know that He is good, even when things aren’t good. In my life, even the very hard stuff has been used by God for my good. I now live the life, and have the home, that I longed for as a child.
I grew up without a mother. My mother died when I was six. I remember as a child laying in my bed at night, crying, and asking God how he could let that happen. I’m known now for having a terrible memory; but I remember that as though it were yesterday. We were a blended family, and my five older siblings by this time were all married and no longer living at home. For a couple of years, my younger brother, Jody, and I weren’t with my dad and we missed him terribly. We had the love of extended family, but I was lonely, and longed for us to be together as a family. When I was 9 or 10 we were reunited as a family and living near some of my older siblings. My dad loved us deeply and wanted the very best for us. There were many good things about my dad; I have a lot of good memories with him, and I learned much that was good from him. But, my dad was an alcoholic, and as a result our home was very unstable and unpredictable. The more important it was to me for daddy to not be drinking on a particular occasion; the more likely he was to be.
I remember as a teenager watching other families that seemed stable and loving, with close family relationships. I was often envious when I saw teenage daughters who had loving, supportive relationships with their mothers. One mother and daughter still stand out in my mind. The mother once bought me an inexpensive ring on a school field trip when she saw how I really wanted it. We weren’t very organized at home and I hadn’t thought to ask my dad for money for the gift shop. This classmate’s mother probably has no recollection of that event, or even likely, memory of me. I watched the sweetness between this mother and daughter and I wanted that. I wanted it for myself as a daughter then, and for myself as a mother, with my children later. Often, when friends voiced their complaints about their mothers, I wished I had the very thing they were fussing about. My dad remarried twice, and one of my stepmother’s was a loving motherly influence in my life, even though our home was not a place of stability. Throughout my teen years, I continually filed away thoughts and dreams of what I wanted my future home with a family of my own to look like. This list wasn’t about “things” but about the atmosphere of safety and love and warmth that I desired to have for myself, and as the defining elements I wanted my children to grow up with.
In my adult life, as I grew in relationship with God, he began to make me whole. What I thought that a family of my own and home would give me, He did. I have great thankfulness for home, and family, and all that means to me. However, I know even that is only fulfilling in the way it is because He is the center and author of it all.
My childhood story leaves out a lot, and is heavily edited, and that’s for the best 🙂 Knowing where I come from will help you understand the passion I have for the life I live today. I love my life. I love HOME. I love the atmosphere of love and safety and stability and fun that is in our home. Our home isn’t perfect. There isn’t such a thing. But, our home is warm and inviting and feels like HOME. My favorite place to be.
I homeschooled my older two children all the way through and survived 🙂 One is a boy, y’all, and I count that among my greatest accomplishments. Now, I’m homeschooling just my youngest, who has Down syndrome. Even with Down syndrome, God continues to use all things for my good. My oldest (daughter, Jordan, 22) recently got married and my son (Evan, 20) lives at home and attends college. I am so thankful for all the years we’ve had together at home, all the sweet memories we’ve made. We are all now making adjustments and finding our new normal since Jordan no longer lives at home. It gets a little easier every day.
Won’t you join in me in this blogging journey as we talk about home, family, faith and Down syndrome? I would so love it if you would. I continue to learn something new every day. About myself, about God, about others. I hope you’ll interact with me. I think we can learn a lot from each other. I look forward to it.