Today I'm gonna play the "parenting a child with special needs is really hard" card. Or maybe it's the "trying to get the help your child needs even when you are a very knowledgeable parent with a background in special education is near impossible" card. (sigh) So go ahead and click the x at the top of your screen if you came here for cute pictures and happy thoughts today!
I've talked about Zoya's anxiety before. I've talked about having post traumatic stressors, possibly PTSD from orphanage life. She has specific triggers that make her very anxious and I just can't figure it all out. People with DS are more prone to anxiety disorders as well. So sorting out the cause of the anxiety and trying to figure out how we can help her has been difficult to say the least. Zoya is very comfortable and happy when she is home with us almost 100% of the time...its other places and people that make her anxious. I can't quite organize my thoughts fully with the situation and need some help...some professional advice....someone who will meet with her and us and give us an opinion of what is causing the anxiety and how we can help. We've tried all I know how to do. It seems to me the anxiety is getting worse and not better and I feel like I'm failing my girl. I will go to the ends of the earth to get her the help she needs but today I feel like I reached the end of the earth and fell off! LOL. I'm ready to waive the flag of surrender on this one.
So I contacted the fabulous doctor we saw at the adoption clinic in Pittsburgh when Zoya was first home. She gave me a contact number for a group of professionals all in one place including a psychologist who specializes in PTSD, a Dr. who specializes in DS, and another who specializes in adoption. Well trying to call them and coordinate an appointment was harder than trying to get a hold of the President. I don't have energy to go into all the details....just hoping they call me back and we can get something scheduled and someone can help!
One question I do have, if anyone can answer.....Zoya sleeps 12 hours a night and usually naps 2 hours, sometimes 3 hours. I'm SO not complaining...but even after sleeping 12 hours some nights, like last night, she still seems tired.....tired in the "tired and cranky" sort of way....not always but sometimes. I wonder if she is not sleeping well...she's always been a restless sleeper, but her ped. said it was nothing to worry about. I could request a sleep study but with her anxiety I might rather be fed piece by piece to sharks. Could the anxiety be a result of not sleeping well if she does has sleep apnea or some other sleep disorder? I suppose the only way to find out is a sleep study. Anyone have experience with anxiety cured by fixing a sleep disorder? It's a long shot but it can't hurt to ask...
And to top it off we have speech in Buffalo tonight, which is proving to be quite the ordeal....we go during rush hour which is the only time she has available (other than Zoya's nap time which would be even worse) and its been taking 2 hours to get there. Last time it took over two hours and then Zoya cried the first 10 minutes while I tried not to cry myself. She needs this type of therapy, I can see progress already, but at what cost? When do we say enough and just hibernate in our house and enjoy life? I want her to be all she can be, but I want her happy too. This might be the hardest part of parenting...knowing when to push and knowing when to lay off. Finding that balance is hard.
And then there's the poop.....oh I've been up to my elbows in poop. Zoya had some pretty bad constipation a week ago so we started her on Miralax....Ummmm NO.THANK.YOU.MR.MIRALAX! This is even worse :( I've never experienced anything like it in my life! 4 changes of bedding, 4 loads of laundry, and 4 baths....in the past 2 days...well lets just say this is my new diet plan and its working fabulously well! AND I'm hoping its all out of her system before we get in the car and drive 2 hours to speech and 2 hours back tonight....
And this concludes the session on "I'm-having-a-bad-day-101." Thank you for your time...please feel free to fill out the evaluation form on your way out.