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Posts by mopdop2000

Ds2 is a bad sleeper too. We tried melatonin, that didn't work. So we ended up using clonidine to calm him down and help him sleep. His pedi prescribed it and it has been a life saver! It only works for 6 hrs, so he often wakes up after that, but at least we get six hours of sleep.   The other thing we've done is buy a tent bed that fits over his twin mattress: www.readysetbloom.com. He is zipped into the tent at night so if he does wake up he can't get out of bed...
Hi there. I understand the feeling of loneliness since we also live in a small town. I am sorry that you have to be at the start of the diagnosis journey, it's a rough place to be. When we realized our younger son was delayed and had hypertonia issues, I self diagnosed him with CP since I thought he met all the signs for it. And our pedi agreed. We got an MRI and saw a pedi neuro who said it wasn't CP and to look at genetic things. That started us on the trail of a...
My son chews holes through his shirst too. Expecially now in long sleeves shirts. He has a specific shirt we put on at nap time which already has holes all down the front. I asked his OT for ideas and she brought us the perfect chewie. It clips to his pants, is on a corld like the old circular phone cords and is a tube. I'll try to add a picture after christmas. It is truly perfect.
I am sorry for your lack of sleep. Being exhausted is no fun. Before we knew ds2 had Fragile X/autism I couldn't understand why he wasn't sleeping well. I am embarrassed to say I even did some sleep training at night that didn't work! We are lucky that when he wakes up, he rarely throws a fit, just babbles and moves around alot. Because of his frequent wakings he sleeps in a tent bed made for kids with autism. Fits a single mattress and he can't get up and roam around in...
I get the vent about the cuddles being disruptive. My son goes through periods like this too. You aren't the worst human in the world, but I understand why you might feel that way.   Would send you an electronic hug but that might not be want you want right now
DH and I are going to start a special needs group that will meet at our church once a month, at least initially. It will not be 'Jesus focused' per se, but a loving place with childcare that can help us all have some time off, with others travelling a similar road. DS1 has ADHD and DS2 has Fragile X Syndrome, autism and ADHD so we know what it is like day in and day out :)   We want the group to be a place of hope and happiness, not sitting around complaining about...
When we were on the disgnosis road with ds2 we were referred to a pedi-nuerologist and told to get a brain MRI done before the appointment. We live in a small town in south west CO, and have specialists from Denver come to do clinics a few times a year. We were told that if we didn't have teh MRI done first, the pedi-neuro would just tell us to get one, then we'd have to wait until the next clinc to get any answers!   Ds was 1 1/2 at the time and had to be sedated...
Expat-mama, we were advised to not go pantless with ds since if he got used to that, then he might freak out with having pants on. He is very routine oriented and I understand the reasoning. So, maybe not going pantless for you has a bright side???
As I was almost in tears regarding ds & the potty last night, I remembered this thread and was excited to get to work and share my frustration with others who are dealing with the same thing! I guess I wasn't really in tears but to a point where I don't know where to go!!!! When we first started potty learning ds got it really quickly, we spent 2 weeks focused on it, no resistance, went every time I took him, stretched out to an hr, started telling me when he needed to...
You have received so many excellent answers already, and here are my thoughts/experiences. We have never had to pay the full amount of therapies out of pocket, but even our co-pays have been limiting to what we could do for DS2 (adopted, fragile X, autism and ADHD). I took the approach that I wanted to be mom - the one he comes to for hugs, kisses, nourishment - physical and emotional. I didn't want to be the one making him sit at the table and work - which is the best...
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