Tuesday, July 26, 2011

The Tough Stuff

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.


  1. Even when faced with "having-a-bad-day-101" I'm glad to see that your sense of humor isn't failing you at all.

    Sorry it has been a rough one.

    Oh miralax that stuff is something isn't it. I don't blame you with the No Thank You on that stuff......!

    Sorry no advice or suggestions. I hope others out there reading have some ideas for you.

  2. Hi Sarah,
    I'm pretty new to your blog but have read it all the way through and find it such a blessing!
    I commented once or twice previously but don't remember all I shared so for now I will say as a bit of background that I have an anxiety disorder as well as PTSD due to childhood trauma. I also have several degrees in mental health/social work. So I wanted to share a few thoughts with you.
    Personally, I think many people with PTSD--ESP. children, find sleep time difficult in various ways. For some, that means nightmares, for others sleep is an escape from past trauma and even after the trauma has ended, when introduced to something new (i.e. anxiety provoking) sleep can be our "out." Also, it takes a LOT of energy to heal and I would imagine, that for Zoya and many others who came from orphanages, they "learned by force" I mean, what do you do when you are stuck in a crib for hour upon hour, day after endless day? You can only stimulate yourself so much and then sleep (for those that are lucky --in that atmosphere) becomes a form of escape.
    Zoya COULD have a sleep disorder--I do. But that is not to say all who experience trauma do (obviously lol). Or, she may simply be going through a growth spurt. Also, one must consider (and I'm sure you have!!) her life is RADICALLY different in terms of what it was for the first year or however long she was in the orphanage. To go from almost NO activity to being exposed to new places and new people and interacting with someone MULTIPLE times a day can be exhausting even for an adult. Imagine how it must be for a child with a background such as sweet Zoya's.
    Your instincts are great, Sarah! You and your husband seem like AWESOME parents and your angel girl is CLEARLY THRIVING!! Have you had her checked out physically lately to make sure there's no underlying illness such as blood sugar issues etc? (You likely have--just grasping at straws and trying to help here lol)
    Keep the faith and know that this too shall pass! Hugs, Lori

  3. I'm saying a prayer for you right now.. Hope you feel better..

  4. TaraN4ms@comcast.netJuly 26, 2011 at 3:22 PM

    You just gave me such an important glimpse into the life of a child with special needs. I just sat here talking with my mom about this because when do you differentiate between typical toddler behavior that 'one-day-shall-pass' and a disorder like PTSD, or a side of down syndrome that needs attention in the form of therapy? When I was a nanny for a toddler, it seemed like the day he hit 3 years old, there was anxiety, oh the anxiety! Tantrums, fits, not sleeping well at night, to taking 4 hour naps, it felt so overwhelming because I didn't know what to do!! There were things like certain shoes that gave him panic attacks because they didn't fit right (they did) or his bed one day made him hysterical and he spent 3 months sleeping on the floor because he couldn't stand the thought of his bed. He went from loving certain foods, to gagging on them! It made me want to pull my hair out, but by the time he was 4, he had grown up and now he is 5 and as sweet as can be! No problems what so ever! I just really feel for you, even though I am not a parent, but I can only imagine what that all must feel like! I am grateful that you wrote this post because for someone desiring to adopt a child with special needs, I think it's important to realize certain challenges that we may not have even thought of before! I pray that you guys get answers and help where it's needed!

  5. Oh anxiety. It sucks. Big time. I know, because I have it.

    The sleeping: It could be that she isn't sleeping well because she is anxious, or she can't "turn off her mind" to fall asleep. She could be waking up in the night and having trouble getting back to sleep, or she could be a three year old, they require a fair amount of sleep.

    You are doing the best thing you can for her, which is supporting her, loving her, and being someone she trusts and is comfortable with.

    How does her anxiety manifest itsself? Crying? Restlessness?

    Does the anxiety go away? Like, at speech does she relax? or is she anxious the entire time?

    I've seen anxiety disorders in a lot of the kids I work with, and I have it myself. If you wanna email to chat/vent my email is nobabynoblog at gmail dot com.

    Anxiety stinks, but it's definitely treatable!

  6. Maybe that's just a coincidence, but when my son's doctor says to be careful to recognize the symptoms of hypothyroidism, she mentions the symptoms you mentioned above. (http://www.endocrineweb.com/conditions/thyroid/hypothyroidism-too-little-thyroid-hormone).
    We check the hormones once a year. Have you had this testing done?

    Take care!

  7. Gosh, I have no advice on the sleeping. She sleeps about as much as Darya and Darya can be a bit cranky in the mornings until she gets going (sounds like me). As far as poop, my friend with DS puts a bit of flaxseed into his food each day to keep the pipes flowing. That might be a more "gentle" way of going about it than Miralax.

  8. Also, I meant to add we are taking a break from therapy for the summer with Darya. Maybe a short break might be good for you, too?

  9. From what I understand, it's recommended that every child with Ds have a sleep study by the age of 3. Apnea is just so prevalent. Claire is a very restless sleeper too and a sleep study is going to be up next on our never ending lists of appts. She sleeps about 10 hours a night with maybe a 2 hour nap and can wake up quite cranky too. I know it's because she's just all over the place while sleeping. But I understand you wanting to skip the study with the anxiety issues....

    And I feel you on the long drives to therapy. All of our appts come with a 2 hour (one way) drive too. Ours is not because of traffic, but because we live in the middle of nowhere though.

  10. If you guys finally get over the mirolax induced mess, and eventually find constipation being a problem again- I would recommend trying prune juice mixed with apple or orange juice. You can serve it cold or warmed up a touch. A small glass a day surely does wonders- a doctor I followed gave this in the hospital before starting any medications :)

    What does your doctor say about sleep apnea? Up to 75% of kiddos with down syndrome have sleep apnea (source is Up To Date)and it causes a mirrad of problems.... Might be worth checking out- I believe that every child with down syndrome should have a sleep study done due to the likelihood of apnea.

    Anxiety- is one of the physicians that you are looking at talking to a developmental behavioral pediatrician? I rotated with one of these and he was FANTASTIC!!! May be something to look into if you are interested- in general they give parents strategies to deal with the behaviors to help the child cope.

    I am praying for you and your family! Hope you have a fantastic day tomorrow to make up for the crappy day today. If you ever want to get together to vent or chat about life I'd love to be there to listen... just shoot me an email!


  11. Do you use melatonin?

    Paul Vincent stopped napping at 3 yrs... I know it sounds bad, but could she be sleeping too much (during the day)?

  12. It must be so hard not knowing what's typical behavior and what is left from her orphanage life. I can say as a mother of 7 that kids are just nuts. I'm not kidding, if adults showed the type of behavior that I've seen in my 16 years of parenting my totally average kids, they would be on anti-psychotic medication. My five year old recently went through a long 4 or 5 month phase where she was terrified that I was going to leave her. She checked with me every night at bedtime to make sure I would be there the next morning, I couldn't leave the house without her, she had hysterical, screaming fits if she thought I might, she even checked the driveway throughout the day to make sure I hadn't left in my car. I have no idea where this fear came from and it ended as suddenly as it had begun. Even if Zoya's fears now stem from her early life she probably will move on to other behavior that is typical and will still drive you nuts. On a side note, my daughter was waking up at night and getting in my bed and I'm sure it was because of her anxiety. I started giving her melatonin at bedtime and it did seem to help her sleep through the night so maybe that would be worth a try, there weren't really any side effects so it couldn't hurt. Good luck!

  13. I'm sorry Sarah you are having to have tough times, those are never fun for anyone. I know for myself have anxiety and I can't imagine not being able to express whats bothering me. I know at night I can't turn my mind off it's like everything is going so fast! Zoya is lucky to have such amazing parents to support her! Keep up the great job you are doing, she is just so beautiful and her pictures with her huge smile makes me laugh daily! Little Laina will be lucky to have a sister like her!

  14. So first off speech... I am in Ohio, but near Cincinnati so opposite ends here, but we have Help Me Grow and once approved (which DS make it automatic) they send a ST out to your house weekly. Is that not an option there?

    Sleeping... My toddler is also an extreme sleeper today she slept in until 2p.m. at which point in I went and woke her up and she was cheery and fine. However, there have been days that she slept 12-13 hours at night followed by a nap anywhere from 2-4 hours and was still grumpy. My ped. also said it was normal, but that we could do a sleep study (and they did a quick neuro screening). She seems to have outgrown the waking up grumpy. She did have a phase where she was having bad dreams and waking up scared a lot through the night and that correlated with the grumpiness, but again, she just out grew it.

    I believe with Sleep Apnea in kids you usually have snoring, so that might be a sign if she does snore.

    My friend adopted a little girl around the same time as you guys and she also exhibits some anxieties. Not sure how similar they are, but she does not have DS and we really think it is relative to her time at the orphanage. She recently decided she is petrified of dogs. When they first got home she was fine with their dog and now she shakes and gets very distraught at the sight.(nothing bad happened) My hope for her and Zoya is that with time the anxiety will slowly disappear and perhaps where they are developmentally right now is making it worse right now.

  15. oh yeah and don't just write off Miralax (imo)when you first start with it you will have major blow outs! Partly because they get so backed up and then all at once it's soft and yuck. However, you can just give the dose every other day or only do half... I eventually was only doing half a dose every other day and that worked well.... just see what works. Doctor said it's completely safe to adjust as needed

  16. Aww...Sarah...hugs and prayer heading your way!

    As far as a sleep study...she probably does need one. Apnea is incredibly common with kiddos who have DS and can lead to all sorts of other issues.

    My brother does deal with anxiety and needs a really easy to understand, but detailed schedule to feel comfortable. We use PECs for that.


    Brooke Annessa

  17. Lord I pray that Zoya would be free from all anxiety and fear. I pray you would take it from her and my daughter Sarie and have it never return. In Jesus name I pray that these kids find joy, peace, happiness all the days of their life. God heal them please. I pray that you would put the right doctors in Zoyas life but more than that I pray that you would just heal her and there would be no reason for a doctor. In Jesus name I pray Amen

    So sorry this is happening. We went thru this with my 4 yr old and she was diagnosed with an anxiety disorder and treatment was therapy but no therapist would see her because she was under 5. So we pray for her and I believe God is healing her.
    Be blessed