I can remember the last time we listened to the radio and every one enjoyed it. We were all together for once and n Denver In thrift store. they were playing a song I hadn't
heard before on the radio over the store speakers , we were all happy , which is so so rare. The five us all together , relaxed , no stress, no screaming , no tantrums , no
fighting or arguing and we were laughing. such a rare occasion for my family.the song was Drift away.It was a great song , catchy beat and great lyrics. I didn't think about
it any more after we left the store that day. The next day Boo sand this song . After hearing it once she knew most of it and just would randomly start singing it as she
played Some times baby sis  would sing with her , other times not.She remembered and loved that song and sang it over and over .

I remember that day. It was the last day we could listen to the radio or sing for years.I don't know why or what the trigger was ocd , mood disorder , bipolar, But what ever
it was from hat happy event on Boo couldn't listen to the radio , it would send her into hours of screaming, music , some times even the theme songs on tv shows would set her
off. Hours and hours or raging and screaming . She had other triggers as well. Change , ocd rituals , frustration life , and bi-polar cycling.She was over sensitive to
sounds. Especially music. Any kind of singing.

I remember being trapped in the car , we were always in the car going to some specialist or clinic or some kind of therapy usually 4 to 5 days a week. Boo would scream and
scream and scream blood curdling high pitched screams. for hours. we were trapped in the car one time during rush hour , I didn't know but there had been a wreck and they
were advising alternative routes . If we had been able to listen to the radio we wouldn't have known , we were stuck in traffic on the interstate for 6 hours. downtown to springs .
And she screamed and screamed. I put in head phones and cranked the music . i couldn't hear it even on full blast  baby sis  watched the pictures on her dvd player. you couldn't
hear anything even with the volume cranked , the head phones did little to block her out . There were many times like this. But this one is the worst one I remember.We had
many trips like this as Zee got older and had activities at home and didn't go to the dr appointments , hubby was working out of town 90% of the time. It was just me and baby sis  and the screams that wouldn't stop.

Never any radio. On the good trips the girls listened to dvds and it was quiet. If you enjoy listing to Barney hell over and over again while praying please God don't let her
go off , let her be able to make it home this time.Living in a rural community with only the very basics of health care is a special kind of hell any mother of a special needs
child with behaviors and mood cycles and swings and ocd triggers and sensory integration disorder will be relate too . But most people have no idea.

When boo was in 6th grade the school had a Christmas program and I will never forget , she had a part with another girl. May as well as been a solo the other girl froze and
didn't sing a work . I will never for get the sound of her voice coming out of that mic loud and clear and beautiful. I think I was in shock to be honest. I hadn't heard her
sing in years. music wasn't something we associated with joy anymore. but trepidation. I remember telling the music teacher that i didn't know she could sing like that ! she
seemed surprised and responded well of coarse she has a beautiful voice that why I gave her the part. Yeah she didn't live in  the world I lived in. she had no idea . How could I even begin to explain to her that I had never knew my daughter sang ,. That all  we ever  heard were at home were the hours of verbal abuse and endless screaming ? that all the good hours of the day were never spent with me they happened at school .

 I guess it
shouldn't have surprised me though , I went through hell in twilight realm and lived in a dimension as foreign to most people as the Klingon nation is to a non trekkie ,
raising a special needs child with very very little support and even less understanding.

 At school music was 30 minutes a day , she went that class with aid support and if
there were any stressers she was pulled out for a time out.Some where she adjusted and even felt stable enough to sing apparently. who knew? Certainly not me I got the
worst hours of the day. By the time she came home to me she was on emotional and mental over load. She was stressed and tired. over wrought and over whelmed and some days the
melt down started before she even hit the end of the drive way and got to the door.

We went from meetings to appointments and had testings and therapy , we discussed the best thing for Boo and the best techniques, we talked about interventions and diagnoses
and people who headed departments and clinics talked about new technologies and research and what ever she needed it was our job collectively to provide, medical emotional
mental , pharmaceutical educational therapeutic and adaptive technologies. My family told me I just had to do what ever needed to be done and my church said I just needed to
have more faith. I knew from the bible that Gods not at fault and well that just left me all alone didn't it ? And alone in a world where music and singing weren't allowed .
Because trust me if music was played or singing happened we all went to that special A nightmare place with a child having a violent verbal meltdown , A child who was born
without the ability to calm herself and who lived a body that refused to function. A brain that couldn't process , nerves that received the wrong signals , muscles that fired
and misfired and refused to work. A mind that was over whelmed and frequently just shut down. sadly the off button never seemed to get stuck in happy mode.We tipped toed
around our house afraid to set off any of the various triggers.We followed the doctors and therapists and Councillors advice and learned that we just had to get through it all
for her sake.So I sucked up pushed it down , Prayed we would make it through.

At some point we got a car with headphone jack and OMG life was freaking boss!!!!!!!!!!! When I traveled at night so boo could sleep through the trip and not have a melt
down there was sound ! glorious sound and singing and music . It was grand for the short time I had that particular van, Over time I purchased and Ipod and had the joy of
music again to a degree. As boo got older her ability to scream became more earsplitting and Ipod alas could not keep up. She learned lots of fun words and began to have
verbal meltdown so some times we got to listen to colorful sailors x-rated tavern language versus just the screaming . It was such a delightful upgrade to our lives.

At some point i bought her an iPod! I have no idea why I did , after all music stresses her most of the time and sets her off , but she wanted one . So over time she got to
where she could listen to the thing for more than 3 minutes without ripping out the earphones . and after a few years she can even listen to it and it calms her instead of
setting her off. There are still days it sets her off and it goes flying across the room , but for the most part the fast forward song button and the pause button allow her to
listen to music and enjoy it and at times it even calms her , not always, but some times. If a song is irritating her , poof fast forward. pause if shes done or is getting
agitated and it has rarely gone flying in the last couple of years.Its surprisingly a tough little electronic.

About a year ago we were in the car for trip and Every one was asleep I turned on the radio on low. I don't remember the actual day we had the radio on with her awake that it
didn't trigger a meltdown , I remember thinking oh its on and I am not touching it because if i shut it off It will be very noticeable. Some time in the last year she adjusted
or become stable enough that we can play the radio some times . She has a favorite station and asks for it to be turned on some times . Some times it still stresses her. Today
coming home I ran into the store to get drinks and when I came out he radio was playing 95.1. its not unusual these days for her to ask to turn it on and she asks for her
favorite station. When we get to the feed lot she comments on how its starts getting statistic and by the corner she demands it be turned off as she cant stnd it. She sang
along wit the radio all the way home from LJ today. knew most of the songs and enjoyed singing the.

As I listened to her singing along with the radio today I realized how we have come from those many years ago in preschool when we couldn't have any music in our lives to a
reality today when boo could actually have a favorite radio station , have favorite songs and sing along to the words and have a favorite artists.We have come so far,a couple
years ago I wouldn't have imagined how far we would come . I wouldn't have even thought it possible.

So too the parent out there who has done everything that can be done.For those who feel they are living in a hot zone waiting for the next bomb to drop , if your life has
gone from in control to out of control and there is nothing you can do about it. If you have prayed and prayed and don't know if you can go on . If the thought of surviving
another day is difficult to even think about . if you feel like you cant go on like this and there is no hope . Let me tell you this ! I understand how you feel . I know
where your coming from. I know its hard and I know there is nothing else you can do.Find some one to talk to . any one, some one who will listen , some one will hear and wont
judge or offer answers , there often aren't any answers. Your not a bad parent because your tired so very tired and weary of day after day of living what seems like a nightmare
with no relief. Its not your fault.Some times you just need to vent , get it off your chest.

Some times even years later it will all come back and those feelings aren't any nicer remembering the event than it was living them . But for me talking ( typing actually)) is
therapeutic. A wise chiropractor once said to me. Just because you didn't deal with the trauma (( referring to whip lash and a couple serious car wrecks )) doesn't mean its
gone away. I find her words to apply to all traumas not just the spinal injury type. I haven't dealt with so many of the traumas in my life. There was no time , no money , no
services, no one to listen or relate with no one who really understood.No one who had been there , and if they had they weren't talking about it .

 I didn't get that adorable
inspiring happy disabled child who made every ones life worth living and inspired all kinds of facebook posts and memes , nope I got an angry emotionally volatile child who
couldn't cope with her world.I got a husband who had to work out of town for months at a time. I got an over active surprise baby 13 months later as I was fighting for some one to realize something is not right my boo isn't meeting her milestones and often isn't in" there".. I was exhausted, clueless, overwhelmed, frustrated , afraid , alone and had no one to turn to. My life changed and not for the better.My second daughter had a
really messed up child hood. how many babies say therapy as one of their first words?But I digress my point is that all of that trauma is still there , waiting to be dealt
with . It pops up from time to time and I still feel those feelings. I still hurt the hurt , feel the fear , I have scars inside me from the last 18 years. still waiting to be
dealt with. And they pop up in the most unusual places and times . like singing a song with the radio on the ride home from therapy.

Are you dealing with stress and trauma from raising a disabled child? mentally , physically emotionally? Don't give up , but make time (( YES I said MAKE time )) for you .
Because there isn't going to be time. and pushing it all down for years and years doesn't make it go away.If nothing else is available write it down in a book at the end of the
day , your fears frustrations trials and traumas.then close the book. For many people that simple act can help to transition the mind onto some thing else. when you close a
book your finished with it right? you can always re open it . its still there . but for now your finished.

 I don't know your situation, I don't know if your child can improve or not. But you may be surprised what they can do I don't know how many times not 
only have I but others I know watched as their child did some thing the doctors said was impossible , the experts said couldn't be done , ect , I guess they didn't get the memo 
they couldn't do it. I don't know any of the particulars  and I am not going to tell you its going to be alright !! If your child was robbed of a normal healthy life in any way 
then its DAMN well not alright! There may be nothing else you can do at this time, But if you have done all you can do then stand! Your not a failure, your not a bad parent , 
life wont always bee bubble baths and roses. If its not ok; its OK to feel unhappy , to be angry and sad . Just try not to let it over whelm you . Take joy in the tiny things 
if that is all there is . A smile, the sun shining even if you cant go out in it . Those little things are often what gets us through the day.

You are doing your best and at the end of the day that is the important thing. Maybe you cant fix it and maybe it will never be ok . Maybe your going through hell. But you are important and at least one person knows how your feeling and can relate to you , Its me and I am rooting for you and supporting you !