As soon as we get there

During the years since boo was born 9 weeks early there have been several milestones in our lives that we strove to achieve. During the early days all of the goals were medically related. boo developing enough strength to suck , boo learning to feed from a bottle, boo having her testing for a million different things. boo being able to gain weight boo continuing to develop her organs and lungs.boo going home from the hospital. after that it was boo getting off oxygen and boo learning to sit up , boo leaning to crawl and boo learning to walk . then boo learning to walk with a walker and boo transitioning to forearm crutches , boo getting a wheel chair and boo getting out of a wheel chair. boo having surgery and boo having tests , boo having therapy and boo being sick . boo having melt downs , boo being able to over come sensory issues. boo being able to control her ocd, boo being able to improve her visual cognitive skill and boo being able adjust to her glasses and booo........ well you get the picture

There was always something we had to push through . Struggle to get done. fight to get funded . work on after school and appointments. We always had a lot on our plates but health care providers were encouraging, we can over come this. We can help her , we will find out whats wrong . we will get funding . we will get the therapy that will help her . we can help with life skills and most of all they always said don't worry its going to get better. Many promised that boo stopped growing many of the problems related to cerebral palsy would settle down , there would be no new symptoms , cerebral palsy isn't a progressive disease.There were new processes and new technology new research and new surgeries to help with symptoms of cerebral palsy. new therapy techniques and the medical field was advancing every year.

After every mile stone or goal was met we always expected that things would get better. Sadly they did not. Boo had so many issues to be dealt with that no sooner would one thing get manageable and under control another would pop up, There were not only the vast unending string of medical issues , but mental health issues. sensory issues, ocd issues , learning disability's, school issues and tests and meetings and special ed and ieps and the list goes on and on .

many of the goals and milestones we met,Boo learned to walk and talk and kick and scream and whack people with her crutches . WE had to teach her not hit people in rages even if they provoked her. we had to teach her to remember to take off the crutch before scratching her nose so some bystander didn't get whacked. We had to teach her to turn her wheel chair. We had to teach her to read other peoples emotions and to understand what they meant  and how to interpret body language. All of the simple things kids learn  by being around others and watching their peers and adults interact , boo had to be taught. She could learn and is still learning things , but it isn't easy and she cant seem to just pick up on things. Things I took for granted with my other children that just happened naturally.Every stage of her life came with hurdles that seemed insurmountable and crisis that she just couldn't understand. And we taught her and taught her and moved on and dealt with the next event or thing or medical problem or mental health issue or melt down or ... well you can see where that is going.

After 18 years I am tired. We all worked very hard for boo. Don't misunderstand boo worked really hard too. She made incredible progress and astounded her providers and therapists. She has done amazing things like a earn a gpa of 4.0  while in 8th grade and graduate with honors. She jumped once too!! I will write a post on that.There are so many amazing and wonderful accomplishments in her life. but each accomplishment brought new challenges and problems. New stresses and new areas to work on . new things to learn to deal with for boo and new things to learn how to do.

Daddy became the good guy . He would drive into town in time to take us out to dinner or go some where fun on days off. I became the bad guy. I forced her to go the doctor and appointments she needed. I made her go to school and take baths. I made learn to do things on her own , hard things. things that took years to learn some timed.I made her go to therapy's and have surgeries the doctors said she needed.I made her have tests and blood work . I made her have procedures to check her organs and refused to let her eat cookies for dinner. I did all the mean things moms do for their kids plus some .Then after all that I made her go to mental health services to help her cope.

We reached that wonderful mile stone of 18th birthday. I don't  know why I thought life was going to get easier but I did , heaven help me I did. Shes not growing any more so the cerebral palsy wont get worse. her bladder is finished growing so we don't need to keep doing tests on it and her meds are set and working to help her to remain continent . we don't have to see the urologist any more. The feet wont grow and we don't need to get new braces unless some thing drastically changes/ unless there is some problem we have to see the orthopedics people. There are no more surgeries to be done except maybe fusing a couple of toes so we don't have to see the orthopedic surgeon.We are down several specialists so things should be getting better right?

A t the beginning of senior year boo began becoming increasingly irritable and stressed. As the year went on she became depressed angry and her mood swings became erratic. unpredictable and stopped sleeping well . Boo has always slept well due to her meds .She takes them at night specifically because they help her sleep. For some reason this isn't the case. we started 8 months ago by visiting the doctor after we visited her psychiatrist to make sure there was nothing med wise interfering with her sleep.we had a sleep study done in feb. got an appointment for follow up and treatment in march and have to till june for another sleep study to determine the strength and settings of the cpap/bi-pap(( still to be determined which}}. Boo cant deal with life and all the changes going on around her . boo cant sleep at night and is depressed and some times sleeps for days , she is never rested and feeling well , everything upsets her and irritates her and she is always angry and cant enjoy anything .She isnt able to function .We finally have an appointment for counselling so maybe that will help.

We met the last big goal , graduate from high school. It should have been a great time and things should have gotten easier . I know I know silly me what was I thinking !!!! But I did think it for some reason.I feel like the weed out in our yard. just when I think things are improving and a little sunshine or water comes my way , bam along comes this guy with a huge week whacker and knocks me back down. I struggle for a while and try to recover then bam !! There is that guy with the weed whacker again !!!! I am like that weed I guess I am too stubborn to quit no matter how sickly I get , no matter how many times that guy with the giant weed whacker knocks me over. I feel like I look like that weed too , tired wilting bent and mangled. I guess if can survive against all odds i can too.

Hurry up and wait!

Hurry get this paper filled out , hurry and get it signed , be sure all the i's are dotted and filled in every line , Don't delay you will miss the deadline. hurry or it wont apply , you won't be eligible and services will be denied.Your floors are dirty and the dishes aren't washed.Child one has a program and child two is having a melt down.

 At some point the screams in the background have turned into a mental chant of hurry up , I just cant , not one more thing , just not today , hurry up hurry up ! why won;t it all go away?hurry hurry and don't forget the teacher who thinks your a lazy mom because you haven't signed the reading log. Hurry up hurry up its just not fair , WHY do I have so many
shares ? so much to do every day , there just isn't any way! The phone is ringing and people are calling , boo is screaming yet again. Some days you just cant win. wait is
it dinner time? But it can't be I have all these deadlines, feed the kids  and put them to bed .Finally they are sleeping now time to rest ,Hahaha that's funny ,Hurry ,hurry up and sign the papers, make the lunches and clean the table , get your forms filled and make a list because now its 1 am and I cant go on.Did it all get done? nope not today , nope , not on any day.

I can remember many many times filling out forms  and surveys and questionnaires for doctors, services  resources and community aid  that had to be done yesterday , or the day
before , the fifth of may or may the fifth now or never the world might stop spinning, You bad bad parent you !What ever the date they had to be done now! Many of them were
incomprehensible to me . I didn't understand them  or really know the gist of the the answers they were seeking , Some I filled out at home and some at meetings and appointments but they all had one thing in common, They were all of vast importance and they all had deadlines if they weren't done correctly no services or diagnoses  aid or funding would be forth coming As soon they were filed and properly dated so as to not be excluded  or disqualified. There would be no word for weeks and months  some times years.

 Then I would be the one calling is there news ? Can you help ? Can we get services ? Test results help with hotels and gas money? The silence that I thought would be a blessed relief before the paperwork was filed turned into and ominous disheartening vast wasteland of loneliness and uncertainty. Surely some one would call today , there would be news , or progress. some word , surely if we didn't qualify some one would have sent a letter or called , surely we cant be denied for every program available in our state . Surely someone will help. The endless waiting would go on and on, while my brain played endless soundtrack of please God please , I need some help . I cant do it alone . I don't know if I can do it another day.

strangely those same people who were in such a rush for my paperwork had a different tune when I would call to see if there was news, you must be patient, these things take time, There is a process. we will call you when there is word. They rarely ever did . There would eventually be a letter in the mail saying that we didn't qualify , they ran out of funds , others were more in need than we were and that we should try and find community resources. Our one resource that we did have wasn't able to help us most of the times, State run family support groups have strict government guidelines for what can be covered and what cant. Funds are often limited Programs are overwhelmed by the amount of families requesting aid.In the early years we struggled to fund the many therapies and learned Shriner hospital is a great resource if you need surgery or cancer treatment , they couldn't help us with therapy and adaptive equipment or gas and hotels, I am sure they are a great program but for us they weren't able to help at all

Friends and relatives were encouraging, oh your a great mom , I just couldn't do what you do . Its great you take such good care of boo.You have to take care of boo that's whats important boo is important !Fragments of my shattered soul would be silently screaming, but what about me  I just cant anymore  what about me ? You just have to do the hard things and when this is over then there will be time for you .Yup they were encouraging but not helpful.

 But "THIS" never got over , it went on 18 years to date. On and on from one medical crisis and emergency and goal and problem to another just as taxing all consuming life event or diagnosis or therapy or surgery  or new symptoms  or new behaviors . On and on , never ending and it took its toll on me. Mentally , physically and emotionally.I gave it my all everyday , all day long.

I went from being the 30 something energetic mom pushing herself past the point of exhaustion every day to do all that was required of me.to a mid thirties mom struggling and isolated, emotionally drained . to  late 30;s mom pushing herself through the depression and exhaustion daily , struggling to do  everything that was required of me .To a mom in her forties
dealing with teenage girls and hormones on top of boos medical and mental heath issues that never ended.To the mom I am today almost 50, tired , worn down and dealing with multiple health issues I am not sure if my body can recover from.Raw from years and years of verbal abuse , exhaustion and pushing long past the point when medical health and emotional health required me to stop.I pushed on . I don't know how I  made it to this point to be honest. I really didn't think my mental health or physical health would make it .


At some  point I knew i WAS A FAILURE. My daughter screamed  that she hated me wanted to die and it was my fault for allowing her to be born, my husband hated home and came
there as rarely as possible and also thought I mismanaged the finances and that was why we were always broke,The stress in our home was no way conductive to any kind of marital relationships. My son stopped coming by to help out because boo made him miserable and he couldn't tolerate her for very long. the college plans I had for a degree and a career were fading into the background of other long forgotten dreams, the personal goals I had died long ago , I was in survival mode , day to day . some times hour to hour.

Extended family relationships grew weaker due to lack of time spent fostering them. I no longer had friends , there were one or two but mostly they were all gone , busy with their own lives and unable to understand we kept making such a big deal out of things .A few seemed to understand the the hell we lived in but they faded away as well . Its hard to grow a relationship when you  can't spend no time with some one, We lived in a world few of our friends and neighbors understood. We became more and more isolated as boos mental health issues became worse.We tried drugs that cause horrid side effects and drugs that caused great depression and drugs that made her too tired and drugs
that made her even more rapid cycling manic. As she grew older her rages increased. its one thing to deal with a raging 3 year old trying to kill you than 100 pound 5 foot middle schooler, boo could no longer wrapped in a blanket and held until the rage subsided or she fell asleep.

 Yes it was sad we had so many appointments but people said often that maybe we should settle down and stay home and put boo in some  activities. There is no way to explain to some one that a child who is born in a body that doesn't work with a mind that fully understands how life screwed her ; has emotional mood swings she cant control and who doesn't have the ability to cope with day to day life  probably couldn't handle the stress of an "activity" even if she were physically able to participate . Which of coarse she was not . people just don't understand a world where seems on jeans physically hurt , and dust touching  fingers can send some one spiraling out of control unable to calm themselves or be calmed for hours.a child that cant handle the emotions and sensations being thrown at them from ordinary every day experiences certainly cant cope with activities or live a  "NORMAL" life. People also don't seem to grasp that therapy's and appointments to see specialists aren't optional or choices that we made.If she had been on oxygen they wouldn't want us to take her off it. That would be silly , she needs it . But they couldn't understand she needed the counseling and therapy and the dr appointments and the meds. Stopping it wouldn't make her life "NORMAL" . Boo didn't have a so called normal life to start with and if we stopped getting her the help she needed she was not even going to have a functioning life,

We reduced our church attendance due to religiosity and dealt with these issues in therapy sessions, I struggled with well meaning people in the congregation encouraging her religiosity , They didn't understand that some thing wasn't right . They adored and loved how spiritual she was and how much faith she had .no one wanted to hear some thing wasn't right and I learned quickly there was little help from friends at church. I needed to have faith and be strong, God wouldn't give me more than I could handle. If I had faith we would receive healing and Jesus paid the price for out healing . If your prayers aren't answered God isn't the problem. All these things are true. And I believe the bible and what it says. God is a good God.He answers prayers and he performs miracles. I don't doubt it.

The people at church meant well . I truly feel that. But they weren't helpful at all. They would ask how she was doing and rebuke me for speaking words of doubt . They would pat me on the shoulder and tell me to have faith and go back to their lives until the next service They meant well but their admonishments and biblical encouragement didn't help us to deal with real issues on a daily basis and seriously if you don't want to know don;t ask , the bible says to call those things that be not as though they were not to call the things are as they aren't , I interpret that to mean God wants us to speak positively  and to speak the end result of the changes we are believing for not to deny the reality of the problem and walk around speaking in wise sounding scriptures every-time some one acknowledges that they have a real problem or issue. that;s just my take on it . And they did adk !

 I had stopped with the helps ministry when I was pregnant with boo and didn't make it back after the surprise arrival of baby girl  . I often got asked when I was coming back. I tried to explain I was tired , exhausted , heart sick , struggling ,and over whelmed .I was on the edge and felt like I was drowning all that was on my plate. No one really wanted to hear this and encouraged me with things like oh we all get tired , and you need to get more personal time with God he will strengthen you. As the girls got older I stopped going to church. I was just too tired. I couldn't drag myself out of bed Sunday morning I felt horrible and a failure as a christian at this point. well meaning members would admonish me that I needed to get back to church and that I had to make the effort to get up and get there . frankly I was depressed and didn't want to face having to hear how if I had enough faith God could provide a miracle and boo could be healed. All the answers lay with my faith and I needed to be strong according to well meaning members of the congregation. I guess they thought that I didn't have any faith , that I didn't pray or believe god for healing , That I didn't ask him daily for strength and wisdom and didn't bother to thank him for all the miracles hes done in our lives . I did lose faith at one point significantly but that is another story.

We would see news reports communities helping out people with disabilities and coming together , churches rallying around a mom with sextuplets and listen to the parents tell
all the wonderful things people did for them 'The media was full of stories of communities banding together , medical bills being paid , fund raisers be held and many many other great human acts of kindness,and still we struggled on alone. That is when I learned to lie. At first it just seemed easier to force a smile and tell people at church boo was doing well and we were making great progress. praise God , this satisfied people and they didn't say those nice encouraging things to me . It made my life so much less miserable. so I kept it up. I learned that most people who asked were asking out of politeness and if you just said fine and didn't tell them their faces would sag with relief.It wasn't like they understood the hell we lived in anyway . It wasn't like them knowing how bad our life was helped them, they just felt bad for us . Then we would get the pitying glances. So as the years went on I lied more and more. I became really good at it . I have one friend who can always tell and will flat out tell me bullshit , or your freaking lying to me woman! But only one. I am a good liar . I can attend an entire event , listen attentively , make small talk and never mention anything about my
family  or whats going on with us , I can do it for hours , talk about the weather to current events  Not that we live a life in current events but we do have internet and all
the Dr offices have tvs. I can smile and make polite conversation, ask about your family and never tell you anything personal. I gloss over treatments and change the subjects
back to you and your with ease . this seems to satisfy people.

People in my opinion don't really have time to bother or want to know and if you dump this information on them they often feel bad , guilty they have normal lives and healthy children. sometimes they are sure such things cant happen in today's society with all its medical wonders and
cures. They are often sure that no one in America goes without treatment for lack of money and that all "Handicapped" kids get everything they need from the government . After all their sisters neighbors cousin is in a wheel chair they don't have to pay for anything. the mom just stays home and cares for her , she is such a great little inspiration and sits smiling in her chair all day. She cant talk but you can tell shes happy . I just smile . I am glad shes happy and feeling loved. Its very unfair that
life threw her who ever she is into a body that cant function with a brain that will never be able to process algebra or in some cases even ever talk . But I am truly glad shes happy . I would have given my ability to walk for boo if I could , I would have given anything if she could be a happy child. Its hell to watch your child suffer  and not to be able to do anything about it .

I have ruined my health over the last 18 years . If I had it to do over again I would do the same thing . No I am not happy that I ruined my health . I don't enjoy the health issues or the fact I have maxed out credit cards trying to pay for meds. But in the end there was no one else to do the things I did . There was no one else to drive boo to appointments , to take care of her after surgeries , to fill out those damn papers.to be screamed at in frustration and rage from every thing from school issues to the sky being blue and and anything that doesn't fall between. If I had it to do all over again. I don't know what I could have done differently . maybe we should have refused the out of town promotion and got a town job , applied for food stamps and got on government aid . Its easy enough to make so little money in poverty stricken rural podunk that you cant afford to take care of your family. Maybe we should have done that but it didn't seem right . We wanted to make a better life for our kids , pay our bills and take care of all the medical issues we were saddled with . We wanted to be responsible parents. I don't know in retrospect if it was the right decision , it doesn't matter its too late now.

I don't think If I had known the hell we would go through as a parent , as a family , trying to get boo help,if I had known it would cost me church relationships, family relationships, friends, possibly my marriage and my health I probably would have done it again anyway. How can I look at my daughter put any kind of price tag on her ?

 Shes not fixed , she still has physical therapy and will be going back into counseling.There are still new health issues to be dealt with and she still has medication management appointments , she still has rages and cant cope with changes and life is slamming her right now. shes still not happy and still screams t me but at least she doesn't want to die and doesn't hate me for not aborting her , so progress!!!

 Life is still hard for all of us and we are all still sitting around waiting for results of paperwork,
funding, programs, insurance decisions, medical equipment and the list goes on. we still struggle to get out paperwork done. we still wait and wait and wait for results .

The amount of time people with disabilities wait for funding and aid and programs and medical assistance is ridiculous.we have scraped up money for wheel chairs at thrift stores because we were denied . We have put together money to buy crutches off the internet because boo cant walk without them and it can take 3 to 6 months for replacements to arrive. we have pushed all 200 pounds of her for miles up and down hills hunched over ruining our backs because it took 4 months to get parts for her scooter, then insurance didn't approve and we had to wait longer for the key lock which the scooter wont run without.People with disabilities often do without much needed equipment.we try and donate all equipment to agencies locally that can store it in case some one needs it. Medical equipment is ridiculously expensive and insurance takes a long time to approve equipment..

Its sad really that those who have disabilities have to spend so much of their lives on hold as they "wait" to be approved and wait to hear results and fight to get the adaptive equipment that can make their lives productive. And many times disabled people do without so much of the technology available today because the government insurance will not pay for things the state doesn't deem necessary . Yes a balanced weighted spoon that would allow you to eat without spilling half the food all over you and  and enable you to feed your self with poor motor skills by  getting the food into your mouth is not deemed necessary by the state but a luxury .The fact that you could have independence to feed yourself isn't a concern nor is your dignity or pride . You can live without one and some  one can feed you, in the eyes of the state your fed so your needs are met.

and so we hurry! hurry up and wait! And wait, and file an appeal, and re word our request and get another specialist to send yet another letter stating we need this or that and then weeeeeeee wait and wait and.........

Rural mental health will make you nuts!

I half laughingly half frustrated remarked to boo's psychiatrist today that by the time we actually got her an appointment with a Councillor I would need mental health services myself . But sadly its true. There is such a frustrating process involved with mental health services that I wonder how many people have just stopped in frustration,

 Why do we need 3 meetings for intake? Boo has been in their system since she was 5 years old. she has had psychiatric services when her psychiatrist was driving down here to provide services for our area. She has had counselling services through the school for at least 2 years in a group therapy session. sadly it was cancelled . The therapist who offered the class moved on it was not offered again. The sad state of many services in rural areas She has seen a counselor there before as well. though we stopped seeing her because she refused to recommend any services or consider referring her to a clinic to evaluate for medication. We spent many a session discussing if any one hurt Boo and did any one touch her where she didn't like. While its good to ask and be aware and I in no way am saying that health care officials should not ask be aware or advocate and be proactive ; I do not think it requires 8 sessions of a child telling her no in private and with me present and telling her she cant stand the anger any more to think hmmmmm maybe anger is a problem , Perhaps this child is having problems controlling and dealing with her emotions.But no apparently not.

 We were able to find outside counselling and eventually were refereed to our present psychiatrist and both are amazing people who have helped greatly . Both are located two hours from us. Sadly the counselor was not able to cure boos problems in the time allotted by medicaid . We decided that fighting with them and losing wasn't worth the effort.We did give it a valiant effort and a hell of a battle though before we finally lost .. Its not ethical to make up reasons and even though its ridiculous to assign a number of visits required to cure a mental health issue , trauma  or any other problem you have to deal with , Medicaid does.

We had started with our case worker to see if Boo could see the counselor who provides services to the consumers at our local day program . Also to see what kind of services are provided. the initial call went in 3 months ago. I have called to follow up several times and each time Its on the agenda for the next meeting and is being worked on . I guess if it ever gets figured out some will call. Silly me I thought when faced with a wall simply go around it walk in another direction.

Boo has been in the mental health system in our town system through the years numerous times.we completed the required three appointments for intake. filled out the ten pounds of paper work and the numerous questionnaires about everything under the sun except how many times a day she pees! we made the appointment and it was last week. Boo came home not feeling well. she was sick for about 3 days . I really think it was the stress of graduation looming near. She { as with many special needs kids} doesn't do well with stress of change. I called to cancel the appointment and reschedule. I was sent to the voice mail of the counselor . I have to talk to her to cancel. I got her voice mail and left a message. cancelling the appointment and explaining that boo was sick. I left a number and my name . she didn't call back. she handles all her own scheduling. 

The next week was graduation week , million memories and several other things for baby sis and graduation practice . Not to mention all that I had on the agenda for cake cookies party ect ect . So I didn't hear from the counselor and I didn't call. It would have been extremely stressful and counter productive for boo that week anyway . I called earlier this week and of coarse I cant make an appointment so back to voice mail . Having heard nothing back yet again and I admit being a little irked and frustrated that today on boo's 3 month appointment I hadn't been able to get her into a counselor yet , three months ! Good thing shes not suicidal isn't it ? So i called again today and told the person on the phone that it would be pointless to send me to voicemail yet again and she patiently explained that i needed to talk to the Councillor and she would see if she was available.

The receptionist asked another receptionist and checked with some one else when finally after telling her it has done no good to leave voice mails. she carefully explained to me again that I needed to talk to her voice mail and she would call me back , I am not proud but I admit i was very sarcastic and when i said i would just love to leave another pointless voicemail. I also explained again, that i was trying to make boo another appointment and yes I did say again, I am having a hard time having faith that a councilor who seem to find time to call me back , cant allow a receptionist to make or cancel appointments can actually manage to help boo,I am definitely lacking faith here.I have no idea if I can request she see some one else or not but if this continues I may look into it .

Its so very frustrating. It does no good to get upset. It changes nothing. No one really cares. that is how things work around here . people in the community agree and sympathetic that its not right it sucks and its best to go out of town and see some one. We are trying to get boo a therapist who can help her deal with her emotions and the stress of changes in her life. Some one locally so she can ride the community bus. We don't have public transit and she cant drive. Its too far to drive her scooter and she wants to be independent. Another trip out of time not only takes a lot of time and money but also just drains her. Its so hard on her to have to make out of town trips and I don't think its unreasonable to want services for my daughter .But so many times people in the heath care community of rural towns are not top notch professionals. That isn't to say that we don't some great professionals  in our community , but think about this ? 

Your young and fresh out of school , there is a huge amount of competition for positions at top notch hospitals and businesses and you  are continually denied for positions because you have no experience . so you hit the internet and low and behold some little rural place in podunk is not only hiring but is also offering you a great bonus to sign with them . So you come do your time get your experience and move on to a better career some where you can shop at stores that don't start with WAL. Or lets say your career isn't going well . or you've made mistakes , your not the brightest and certainly weren't in  the top 50 of your class but you have a degree and you need a job some where . well low and behold welcome to podunk where you can practice and pretty well be assured of  job security . Its hard to get people with degrees to want to come to podunk. Podunk is a poverty stricken community and the local clinic is the only place in town that takes medicaid so walla guaranteed clients ! 

And this is the struggle in rural america. You have few choices and only basic healthcare. A few specialists come through but the wait times can be long . And that is just for your everyday podunkers. Special needs podunkers get even longer waits and it can be hard at times to even get some one to recognize the problem.

 for example when my son was a baby he would stop breathing at night in his sleep . I was a new mom but I knew something was wrong . I made an appointment with our old rural country doctor who said lay him down . So i laid him on the table and he breathed fine. I was told I was worrying for nothing and he was fine . I didn't feel right about this and the problem persisted along with multiple ear infections . we got a new doc in town and older man he flat out told me I was a paranoid parent and was imagining things , ear infections continued constantly . new doc in town I took my son in he prescribed dimetap .  ear infections , dimetap , my allergies dimetap . told me i was imagining things the boy is fine .when my son was about 3 and entered in preschool due to screening and discovering his speech skills were non existent. we got a pediatrician, I took in my son cringed and told him the whole story and i swore i want making it up , He told me this is a serious condition called sleep apnea it can be fatal. He said I wasn't imagining things and He needed to see a specialist right away .I asked why the other doctors didn't know about this  and he said , the problem with old country doctors is that they live in rural areas where it is hard for them to keep up with the latest medical research so some times they are years behind on medical advances.

Health care in Podunk has improved over the years but we still have things like this happen. Clinic doctor thinks child is fine and parents are paranoid , parents take child to dr in another town and a lot of times the er doc  will admit the child to the hospital , and many many more tales such issues.

so the moral of the story? Podunk sucks ! lol just kidding Podunk does suck but Mom's if you know some thing is wrong with your child I don't care how many Docs tell you your paranoid or an over protective parent. We moms know our children the best and if you know in your heart some thing is wrong , keep fighting. Get a second opinion , or a third . Get tests and see a specialist.I cant tell you how many moms I have met whose original doc told them there was nothing wrong with their child. A mother knows when some thing isn't right! You keep fighting for your children until you get the help they need. Trust your maternal instincts

chairs, what a hassle!

Graduation is a happy time full of the wonderful year end parties and award ceremonies and activities! Or so they say . Ha I don't think so but I will let you know next year when my baby graduates. My so called normal child, Errrrmmm yes lets not get me started on my views on that ! My non disabled non special ed daughter! Senior year wasn't a great and momentous occasion for Boo. It was filled with stress , pressure, flaring depression,meltdowns and aggressive verbal behaviors. I really don't think she enjoyed any of it. There was so much pressure and so so many deadlines , they pushed the students even harder the farther into the year they got .it was fast paced and while many students thrived in this senior year atmosphere boo did not.I certainly didn't.

And the moment she graduated and I snapped the picture there were no sentimental tears of joy and sighs of happiness.No smiles and hand patting from one proud parent to another .no we did it, and proud smiles of our work is done . Nope I do't live in that ideal world . we sighed wearily and prayed no one would accidentally knock her over in the ensuing crush. I sighed in relief that she didn't fall. that her crutches didn't get caught on the protective floor mats, That she didn't have an asthma attack and that she actually made it out of her chair .It was close there for a while. wouldn't it have been grand if she didn't graduate because she couldn't get out of her chair ?, because she struggles with folding chairs and needs to use it as support and leverage to stand and so it buckled ,I had a vision of the last folding chair she sat in as it folded up on her with in it and both chair and boo crashed to the floor !!! because she lost her balance trying to stand wearing a slippery synthetic grad gown? Apparently they couldn't find her a non folding non slick chair that she could actually get out of. though the band had them and they have used them for other occasions . But such is our life.

 In first grade we had a seating analysis done , the school couldn't of coarse pay for that even though they have therapy services and it was for school. We had the analysis done at children s hospital by a developmental pediatrician and her department. We had to present her entire medical record and they went through it all. It was huge ! After they reviewed all the records and lengthy questionnaire and all other documents , we drove the 4 hours to the hospital and were interviewed , not just boo the whole family . they did an interactive interview with boo and evaluated her fine and gross motor skills and lots of other stuff . this was no slapdash review,

I presented the results from the developmental pediatrician and her department at children s hospital to the therapist at our elementary school. it stated she needed a firm chair with a straight back and hard surface to support her body, due to poor muscle tone a curved plastic chair would cause her to expend energy all day in order to be able to sit up straight and she would slide around in it ,It was explained that boo had limited energy an needed to conserve energy as much as possible  they requested a non plastic chair with a 90 degree angle that wasn't so tall that she couldn't place her feet flat on the ground . there was even a diagram included with the l shaped straight back that would put her posture at a 90 degree angle with feet flat against the floor . it was pretty clear and simple with minimal  medical jargon. easy peasy!

 the next day boo came home in tears she was sobbing and screaming because she hurt so bad. she was angry because her sit on the therapy thing. I was totally lost. I had no idea what was going on and and couldn't fathom how asking for a chair led to my daughter hurting so bad from sitting on a pillow thing that made her hurt because she had to work hard so she didn't fall off of it . I went down to the school the next morning and talked to her teacher.The teacher asked me what had changed since ;last time  we had talked. I explained the plan , she gave me a puzzled look and said they had not shared the results or the plan with her , had just told her that boo needed to sit on this all day , she said that they had come in after lunch and after 2 1/2 to 3 hours she had taken the thing away because she was afraid boo was going to fall over , she told me she wasn't a therapist but this seemed to be causing her more problems that it was solving and she didn't see how her falling out of her chair   because she was exhausted and how focusing all her energy to stay seated was safe or good for her educationally . I assured her i agreed.

I then talked to the therapy aid who in her great wisdom decided that since she didn't have enough muscle tone to be able to sit in a curved slick plastic chair that she needed to work harder so she told her that she had to sit on a Frisbee shaped disk filled with something very squishy , all day.I sat on the damn thing. you had to constantly re-balance yourself and I could feel my muscles working to keep myself upright. I was livid. I called the therapy supervisor to complain and was told that this was a good decision. she didn't need adaptive seating she needed to work harder to strengthen her muscles.they were after all trying to help her.She implied that good parents would want to help their child improve.We had to refuse the device and state that we didn't want our daughter to use the strengthening device and state that we wanted her to have an adaptive seating , she said that they didn't have anything that would be suitable and it might take some time to get boo adaptive seating. I still haven't heard back from them on them having found said adaptive seating yet . she just graduated high school

Finally the teacher had her husband also a teacher in another school in our district go into storage to find her a simple wood hard backed chair. I had to sign a paper stating that I refused to use the therapeutic device provided and it was stated to me that I was refusing the device that would help my daughter get stronger.They made it sound like I was a bad parent and refused to acknowledge the study done by children's hospital and the recommendations for the adaptive seating.

 yes stuff like this does happen. it happens all the time all over the united states and yes they can get away with stuff like this because most parents don't know their rights. there are no parent rights groups in rural communities. parents are over whelmed and struggle day to to day .Many times  parents are faced with domineering personality's and and are simply bullied into believing they have no options or choices. Principals and school district staff have an agenda that is all about finances and will resist spending large amounts of money on something that only one student may use or need , even though they are required by law to do so .I think that we as parents of a small rural community  trust that our best interests are at heart.The staff of the schools and agencies who serve our schools are our neighbors and have lived with or around us for years . we forget that politicians and government officials have agendas and guide lines that may not be in our best interest and so may times by the time we as parents find out its too late.

 Need less to say my daughter didn't make a lot of progress during this time and fell even farther behind.

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 !