When the girls were little we had the usual sleep problems. Trouble falling asleep and waking up throughout the night. Back in those days it was either for a bottle, a diaper change or someone being sick. I hated those long nights when sleep felt so far away.
Here we are three plus years later and we all still struggle with sleep. It is such a commodity for us that we could buy and sell it (if we could). Now it is different issues. Now we deal with both girls sensory systems being "integrated" enough each night to get them to sleep. If they are too stimulated or not stimmed enough we all pay for it. Then you add Abby's strange anxieties to that and we have more trouble. A couple months back she had a nightmare about a bee trying to sting her. Ever since then she fixates on bugs being in her room trying to sting her. When she is awake she has no fear of bugs but when night rolls around it gets ugly.
We put the girls to bed usually around 8:30 and most nights it is after ten before they stop talking, crying, yelling, whining, etc. Sometimes it goes on until after 11 or 12. It is so taxing for us as parents. That time after the kids go to bed but before the parents go to bed should be parents only time. Time to talk, or clean, or work, or catch up on the computer. We lack that and it shows. Some weeks we are both so spent that we barely speak after they finally conk out.
This is an issue we hope that the behaviorist can work on with us. Maybe by giving us some strategies that we haven't tried we could find a better mix. I don't know though. This could just be part of our long term reality. Hopefully not but one never knows.
The beauty of a rare diagnosis... the unknown.
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8 comments:
pThis is probably a silly comment, but I noticed there are 2 blogs about your children and I wanted to make sure you know about it in case there is a copy cat. it is called rhombencephalosynapsis.blogspot.com.
Anon - Thanks for looking out for me. I know there are people who have issues with people stealing info about their family. That is my blog devoted purely to RS info. Thanks so much for caring about us though. So sweet!
Stupid question and i am asking it from an early intervention & child development perspective - where do they sleep (type of bed?)
-meg
Meg - Good question! They still sleep in cribs. This isn't by accident. We have mulled this over for the past year almost every month. Abby either needs to remain in a crib, be in an accommodative bed or we have to get her in and out of bed. Grace is really just along for the ride. I am thinking at 4 we will make the switch to "Abby friendly beds". But we are hoping to meet with the behaviorist before then to get input.
Meg - Oh... and they do share a room.
Kris - the reason I asked about the sleep arrangements was b/c I actually have a 2 kiddos/siblings/twins that I am working with right now that were dealing with similar behaviors. The situation is different in the case that the one twin is "typically" developing (and yes I put that in quotes b/c although I have been in this field for over 10 years I still have never seen a young child who develops exactly "on track" or typical), but does have some sensory processing concerns and sleeping issues. His twin though is extremely high functioning but on the autism spectrum. Smart as a whip, but some social delays, lots of sensory processing concerns/issues, OCD (routines, schedules, ways things have to be just so), anxiety, sleeping issues, meltdowns.
We targeted the sleep issues first a couple weeks ago in hopes that maybe some of the other behaviors were being increased/heightened from lack of sleep. We have seen some progress & improvement in all areas! I know that the situations are NOT the same, but if you want to chat, I would be more than happy to.
I should add that the twin also has some motor planning concerns, balance issues, and poor/low muscle tone :0). So there was/is a lot of safety concerns involved with this kiddo when it comes to what types of strategies and activities to put into place.
Meg - Wow... that sounds oddly similar to us. I would love to pick your brain if you don't mind...
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