Life with Josiah revolves around 3 things: sleep (or the lack thereof) the bathroom and food. Throw in some head banging, a little hair pulling, a bit of bouncing and you get the full picture.
We’ve been dealing with insomnia for so long, I can’t believe it continues to be an issue. Surely, by now we should have figured out something to keep this boy in bed at night, resting peacefully.
The do-it-yourself staple gunned, netted bed worked initially, but like everything else with Josiah, only for a while. He’s a clever one. Given enough time, Josiah figures out how to outsmart us at every turn. He ripped a hole in one side of the netting which gradually grew larger over time. He mastered pushing the bed away from the wall and now climbs out with ease. Our homemade enclosed bed no longer encloses our boy.
For the past few months, Josiah has been wide awake for the majority of every night. He falls asleep at 8:30 or 9 pm but likes to start his happy day by 1 am. Then, around 5:30 or 6 am he may nap for another hour or so, but not always.
Rick and I don’t care too much for this schedule.
We don’t fall asleep by 8:30 and certainly are not ready to start our happy day at 1 am. So we take turns. One of us parties with the boy while the other enjoys uninterrupted rest for a short while.
One of Josiah’s amazing caregivers has started taking Josiah to her house for sleepovers so Rick and I can have a break. She has done this 3 times in the last couple of weeks. When she does, it feels like Christmas, Valentine’s Day and my birthday all rolled into one. It is the greatest gift ever! Might even trump Bora Bora, but that could just be sleep deprivation talking.
It’s an incredible feeling to go to bed at night knowing you won’t be startled awake in the wee hours of the morning or required to remain awake for hours on end when you can barely keep your eyes open. For someone else to do that in your place is amazing.
But, as amazing as it is, it is just a band-aid, a stop gap measure to keep the parents sane a little while longer. It isn’t a permanent fix. So, unless Rick and I want to tag team through the night for the rest of our lives, we have got to find a solution. A tried and true, this one is certain to be the answer you’ve been searching for all along, kind of solution.
We thought we may have found it the other day.
We purchased a 3 man tent at Academy. We set it up in Josiah’s room in the middle of the day, complete with a mattress, pillow and blanket. He climbed in, smiley and happy in his cozy, new space. The trial was a success. We could hardly wait til bedtime.
The first night he slept in his tent til 1 am. We had forgotten to zip it shut.
The second night he slept all the way til 3:50. After a quick bathroom break, it was back to bed. At 6 am I heard some noise and sent Rick in to check on him. This is what he found.
Josiah was inside with the mattress flipped over. The bottom of the tent was on top.
There are no tent poles in tact. There is no visible doorway. It’s clear from these pictures, a zippered tent is not the solution either.
Starting tonight, we are sleeping in the van. Josiah has no difficulty there.
Like so many others, I have prayed for this boy to sleep!!! I will keep praying. I know you probably have, but have you had his neurotransmitters tested? Balanced cortisol is key to going to sleep and staying asleep. It changed our lives. Love you!!!
Thank you so much for the prayers, Kim!! No, haven’t had neurotransmitters tested. How do we do that?
You and Rick are my heroes.
Aww I feel your pain my sweet wolfie is the same way goes to bed and wakes up and then he sneeks downstairs and gets into anything he can before I hear him.We have tried melatonin but it didn’t work.I need a soloution as well.Keep up the great work
Elisa, have you tweaked the time you give Melatonin? For years we were giving it just before bedtime and it did very little. Then we were told to give it to Josiah at dinner time and sure enough it worked it’s magic by bedtime. The only hiccup is it gets him to sleep, but doesn’t KEEP him asleep. It’s a step in the right direction though and we will take every little victory we get! Best wishes to you. I hope you find something that works.
Just an FYI…we were recently told that 75% of kids with DS have sleep apnea and as they age, the incidence increases. I have NO idea how we will get it done, but a sleep study is in the near future for our boy.
Wrinkled, mangled capes and all huh? You are too sweet. Thanks Phyllis. We don’t walk this path alone. Unfortunately, there are way too many of us sleep deprived parents out there. Just need to think of THE INVENTION that would fix this, go on Shark Tank, sell a gazillion of them, move to Bora Bora with a team of caregivers, who would help with Josiah and spend the rest of our days in hammocks with Pina Coladas in hand.
I know you hear this over and over, but so many of us pray for you guys and pray for Josiah’s sleep habits, bathroom habits, head banging habits. Will keep praying and how awesome of your caretaker to give you and Rick slumber parties!
Liz, can you imagine what life would be like without all those prayers? I shudder to think about it. Your prayers are so incredibly beneficial and greatly appreciated!!!
I love that the caregiver gives Josiah a chance to have sleep overs at her house. He must get tired of hanging with his aging parents and enjoy kicking up his heels a bit in a new environment with his fun and energetic ‘bossy friend’ as she refers to herself. LOL
My son is twenty. We had these issues in the way earlier years. My son too would lie awake after just a few hours of sleep. I was fortunate that although the he was awake he never left his bed. I mad sure not to lose that..I never offered TV or toys etc…of course him being awake meant I wasn’t to sleep because you never know as to he is very unpredictable. We were having Shavuot issues at school and a doctor suggested that we need him to sleep more soundly. So we turned to medication. I don’t like to give medicine because my son is non-verbal and can’t tell you what he feels or not. The tricky part is giving the medicine must be hidden in food without detection. The medicine did help and keeps him asleep all night. However, now that we are back to school he has to wake up too early so the medicine isn’t a good idea, but I do feel it helped some to train his body to sleep a little longer. We too EAT…a lot have to hide food all the time to control his portions. I don’t know where you live but I can suggest a doctor that specializes in Down syndrome and autism with issues just like you describe. Apparently parents travel from all over North America to meet with him. He is in Baltimore Maryland.
I’m sorry it should read “behavior” issues at school.
Thanks for your comment Dena. Seems like there is a definite pattern in development with our kids. So many have sleep issues. How nice that you son stayed IN his bed, though I’m sure it didn’t feel like much consolation to you at the time. Josiah is 14. We have been doing the medication thing for quite a few years, something I never wanted to do but resorted to out of desperation. We crush all his meds and hide them in food also. Josiah is non verbal as well. Not knowing how he’s feeling or what he’s thinking is the hardest part in all of this! We are in Texas. Do you know what the Dr. in Baltimore recommends or how he helps? Is he at the Kennedy Kreiger Institute?
Have u done a sleep study, and recently? My guess is he cant breathe. Most kids with ds have apnea. He may be obstructing and then is awake but doesnt know why. Or if its bad enough a d he k ows he can’t breathe, doesn’t want to go to sleep. The picture of him sleeping fine in the van is a clue. Its easier to breathe upright and may be why he likes it there. Have u seen an ent recently? Checked on tonsils and adenoids? (adenoids can grow back even if previously removed). What are his oxygen saturations line at night? Also, for the hitting himself and self destructive behavior, he may be exhausted. Or in pain. (And exhausted is a kind of pain). Have u done a CBC work up? And how is thyroid and iron? Both are classic sleep disrupters in ds.
We need to do a sleep study. It’s been something recommended by his Dr. for the past 6 months, however we had great difficulty even getting to the sleep study consult appointment to determine whether he would be a good candidate for the study. LONG story (and a previous blog post or 2 about that crazy day at the hospital!!) but since then we’ve been dealing with intense GI issues which have taken all of our attention lately. Once we get the GI issues resolved, I’m hopeful sleep will improve some and we will pursue the sleep study then. You’re right though…sleeping upright in the van IS a clue! I hadn’t really thought of that before. He does fall asleep during the day sometimes on the floor in the living room but it seems he wakes frequently, pops up to a sitting position (sometimes looking like he’s WIDE AWAKE) then after a minute or so, plops back down and goes back to sleep. He had tonsils and adenoids removed but we were told adenoids can grow back. I have no idea about oxygen saturation at night. Is that something we could do easily here at home? All blood work is current and has been good! I think the self injurious, aggressive and destructive behavior is a definite result of pain (GI issues) and exhaustion. When we see behaviors ramping up, it’s almost ALWAYS one or the other of those things. After a good day in the bathroom or a good night of sleep, he’s a different kid. Truly, it’s like flipping a switch to this sweet, loving, compliant, HAPPY kid!! Thanks so much for your comments and suggestions. Very helpful!!
This sounds like what we went through. Once we changed he foods and cleaned up her gut, she felt better, had less behavioral issues, less anxiety, and slept better. Then we tried the sleep
Study. She slept well sitting up but woke up frequently. Turns out her IX dipped to the 60’s! I put off the study because I really didn’t think she’s tolerate the testing as she has spd and don’t like the touching. But somehow she did it and she had 24 apnea episodes an hour. We got her in a machine right away and she already sleeps all night! It took a little getting used to. She still c/o being tired, but I think it’s just a habit now. She also says she is hungry or sad, etc. she just doesn’t feel her emotions and or body function well. I’d recommend getting that study asap!!! Good luck and God bless!
I think the gut is KEY to helping our kids feel better which will ultimately result in better sleep. Too bad these guys don’t come with a manual huh? Hey, there’s an idea. Let’s all put our heads together and create one to pass on to parents of younger kids. Sure would make life easier you know? How did you get your daughter through the sleep study? I can’t imagine Josiah leaving even one electrode on, let alone many. He has great difficulty (and it requires 2-3 people) just to trim his nails. He is so strong and resists to the point of almost winning. Any insight as to how to get a kid like this through a sleep study?
My daughter slept much better after we removed tonsils and adnoids. Things also got much better after removing gluten and high fructose corn syrup and sugar from her diet. Not easy for a kid but I am happy with the results.
Also tons of people swear by the essential oils. Their is a restless child blend and many other ones that people put in a diffuser. Doterra and Young Living are both reputable. You can also rub the oils on his feet. I would check into the oils. Its natural and not too expensive to test.
Good luck and I hope you see some results.
So glad you are having good results with your daughter, Monica. Josiah had tonsils and adenoids removed a couple of years ago but I understand adenoids can grow back. I’ve tried essential oils but not consistently. The diet tweaking is the biggest hurdle we need to tackle next. He eats very healthy food most of the time but we haven’t tried eliminating gluten or sugar yet and there is still some of that in his diet. Thanks for your comment!