A very good day…

I have been worried about today for a long time. We met with the District Attorney about the situation with Tic. I have been so nervous about it.

It was spectacular. This wasn’t just a parents meeting it was for all of those who are involved. The boys who helped the girls out, walked in to the meeting together. Tic flanked on both sides, by the boys who put them selves in jeopardy to protect her. The ones she was so shy about after the incident, were right by her side, again demonstrating to anyone watching, her worth. After the first three stepped into the room, the second girl came in. Again, with a boy on each side. And the third girl involved was the next to walk in also with two boys in tow.

The entire room stilled at the precious and obvious support. Last but not least, the water polo coaches came in on the coat tails of those they lead. All three of them. Dressed in suits. They carry with them a quite reverence that is just phenomenal.

The kids, calm, quiet and powerful, took their seats. After their entrance it took a minute for the ADA (Assistant District Attorny) to gather his thoughts.

They are pressing charges. They are charging them as adults. Four boys were named in the file. They each have seven charges pending. They will be officially arrested this afternoon. They are going to request this team be removed from the circuit, and they are charging the coaches with crimes as well.

This was a deliberate attack on the Water Polo Team. It was pre meditated. It is sick. What is wrong with people? And what the hell is wrong with their stupid kids. I would like to smack every single one of them. I hope and pray that justice is done.

However, at the end of the day, I really do think Tic is going to be just fine. She held her head up high today. Not a flinch of fear, not a drop of eye contact. Situated among her peers, looking regal and calm, she did very well. She answered and asked questions with blunt honesty and with determination.

I love our coaches, I love that they have taken the lead. I love that they have discussed this with our team, in a quiet respectful way, that is laced with decency, dignity and respect.

What a shame, all kids do not have coaches like ours, and what a shame they have to engage in criminal activities, in order to make them selves feel good, I am so glad that in the end they won’t win.

Diagnoses

Chronicler, you bring up a good point, in your last question/comment.

This particular Doctor didn’t offer a different diagnosis and he only said what he did in a half handed comment, that was almost like a muttering. He is a nephrologist, who specializes in renal function and I am not at all sure what he meant. I just thought it was an odd comment and I didn’t get very much in the way of a response.

I have learned to have a different view of doctors, since this entire process with Ethan’s conception began. I have always had this “God Complex” where it comes to Doctors. Thank goodness I have been able to put that behind me.

I have learned to look beyond the coat and meet the person. Sometimes it is easier than others. In the very least I command respect for my thoughts, ideas and expect them to have the time to explain things to me, that I don’t understand. On the other hand, I go into the office, packed with information and I feel mostly well informed. (These days) That has been a real challenge for me, and one of the biggest I have faced, since I had Ethan.

Still, these little comments are so irritating, and overwhelming at times, when they come so unexpectedly. This was the first time we had been to this Doc. He came very well recommended and it is tough, since there are only TWO in the state to choose from.

So, Ethan’s actual diagnosis has not changed. He still is considered DeafBlind and was given that particular diagnoses by the Schools for the Deaf and Blind they have a slew of testing that they put the child through and criteria in deficits that they must have in order to qualify him for services.

But you are very right, the pen is mightier than the sword.

Children who are unable to receive diagnoses, lack in getting the services they need. Even children who are SEVERELY disabled, that do not have a specific diagnosis struggle to get the adequate things they need. Also not having a diagnosis is frustrating to parents because they want so badly to be able to know *why* … or even *what* to expect. Some children who can be placed in a basic “class” of diagnosis, are given fairly accurate services.

For instant, I have a friend who has a daughter that is 7. They know it a neurological condition of some-kind. Her daughter functions on about a 16 month level and there doesn’t seem to be any cognitive improvement at all. So her daughter is considered “mentally retarded” and gets services under that category. However, it could be argued (and for them it is a constant battle) that… if she did this or that therapy it would help her improve, but because they don’t have something *OFFICIAL* to go on, they are often denied on “experimental” therapy for a “mentally retarded child” Where as, if she had the diagnosis for… Autism, then they would or could try some of those therapies, because it has been proven to help kids who are Autistic.

Being an Economist. I see the pros and cons of treatment. I see the numbers and dollars, and the why’s of a lot of things. It’s a tough spot to be in. On one hand, I think that personal responsibility is required for the world to go round. The he did this or said this excuses in life, have our entire society blaming the rest of the world, and relying on no accountability. I had Ethan, and I should be able to take care of him, and afford his costs. I should be responsible for him. I was with my other children, even in times of crisis. AND I think I have always been a little hard on those… who haven’t. At least in my thoughts.

But, I have come to the conclusion that no matter what your resources are, no matter what level of education you have or no matter how good your life’s circumstances are, that when you have a disabled child, you can NOT go that road alone. You can’t personally provide the funding for therapies, and equipment and all the medical procedures, even with excellent insurance. You can’t rely on your inner strength to provide you with the stamina of such a drastic change of daily living.

I feel or sense the heartache that parents face going with out a diagnosis. It is even with paper in hand, a constant struggle. I feel like I have to fight, and fight and fight, every system, to get the proper care for Ethan and I know exactly what is wrong with him.

A Diagnosis Challenge

I recently took Ethan to a different Doctor about his kidney and liver issues.  I hate going to new docs.  You have to go through the entire experience again and you constantly get asked the same questions over and over.

Things that are most alarming are questions like,  “What is ECMO”, or “Has he had any surgeries” (after you explain what ECMO is)

It is just something that will continue through Ethan’s life, but it drives me nuts.

This particular Doc is a specialists, specialist.  He was a pediatrican, then became a nephrologist.  He knows his stuff, and I expected to mesh well with him.

“Who gave you the DeafBlind diagnosis?” He said

I stammered.  “Several Docs did, actually.”

“I think it is wrong” He said.

I said, “He can’t hear or see.”

“I understand that, but I still don’t think the diagnosis is correct” He said.

*Sigh* It is so hard to keep going and going and going.  Some-days I think I need to find a place to add some extra energizer batteries.

To All Young Women’s Presidents, Leaders and Mother’s of Young Women

Please I beg of you, if you are in the sacred position of leading our beautiful young women… I am begging you, please read the pamphlets put out by the church regarding their ideals for our teens.

It is a sacred and beautiful calling and I can not express enough… how important it is for these girls to have good solid values, examples, and lessons of faith and perseverance.  If you don’t feel like you can be an *example* then, tell the Bishop no, when you are called.  It is just THAT simple.

Here are a FEW things, just in case you were wondering.. of what NOT TO DO!

Do not, and let me repeat DO NOT, show your young women your new tattoo.  Don’t mention it, ask them to go with you, don’t even suggest it.  If you have to have one, then keep it to yourself.

Do NOT, wear seventeen earings in your ears and try to suggest that kids only have one, or none.

Do NOT, hold a baby shower for a 14 year old girl, and invite her friends with out her Mother’s permission.

Do NOT,  have parties at your home, that last all night, where the young men are there too.

Do NOT, lie to parents. EVER. Not for any reason. If you have messed up, own up to it, apologize and get on with it.  No one expects you to be perfect.

*Sigh*

Legacy of Abuse

I wonder when, in my family the legacy of abuse started.  Though the abuse I experienced, wasn’t at the direct hand of either of my parents, it was clearly a legacy through my fathers first wife.

Since my sister’s grandfather was a sexual abuser, I would have imagined that she too experienced that in her lifetime. She married an abuser.  She let him abuse her children.   She still has really never admitted her role in their horrible life’s experiences.

I wonder how we get to a place, where we can know our children are being sought by predators we put in their path, and we can turn a blind eye?

How does that legacy begin?  How can we stop it?

What I find most heart-wrenching is that every single one of my half sisters, have married abusers.  They have allowed their children to experience the same things they did.  Maybe in not quite the same way, but clearly…. there are issues.

I once asked my oldest sister, about that.  She claimed that she did not know that her husband was abusing her children.  That infuriated me.  I asked, “How could you not know?”

I realize now, that I was asking her questions she wasn’t prepared to answer.  I also understand now, that I don’t think she was *aware* enough to comprehend a lot of things that were happening in her own life, due to her mushy mind and highly medicated body.

When I first got my two oldest they were so young, it didn’t occur to me that they had been abused.  I know differerntly now.  How nieve I was, early on.

One thing I can say with certainty, is that the Abuse this family has experienced has stopped here.   Jay was 3 and Hans was 18 months, when they came to live with me.  I have protected them.  At least I think I have.  They have had appropriate counceling and I have watched them closely.  I think… i have anyway.

What if I haven’t?  Do I need to be concerned?  We have openly discussed it. We have been open, and blunt and have had a lot of talks, lessons, ect.  Have I done all I can do to protect them? Is this actually something that can be stopped?

Am I foolish to think. Enough is enouogh. This stops here?

As my little boys have grown into men, I look at them, I hope and pray there has been enough intervention. I hope they know their own minds. I hope they  are confident and comfortable with themselves.  I want them to know for certain right from wrong. I want them to be able to protect the weak, and stand clear of their legacy.

I ache for the questions in my heart to be comforted.  I ache for the anger I feel for those people in my life, who have clearly turned their backs on their children and let this happen to them.  I pray, I can find forgiveness and compassion for my sisters who have let this legacy continue either at their own hand, or the hands of their husbands.

For as much as I want to understand and offer forgiveness to them, I also want to shake them.  I want to shake them hard and say “WHAT ARE YOU THINKING”  I want to know the hows and whys.  I have so much anger that my sisters have not protected their kids.  I do not beleive that they don’t know right from wrong.  I do not believe that they were not aware it was happening. I do not beleive that they didn’t have it with in themselves to stop it.  I think they are weak, I think they gave in, and I think they will be held accountable for all of those things they have done.  I think that someone who lets it happen is just as guilty as those that do it.

I have one sister, who chose one child over another and tossed one into the wind.  How does someone do that?  How could your life, be so dark that you could  do that?

I really do want to understand.  I really do want to be able to forgive them. I want to not care so much. I want it to not hurt so badly.

I really, really, really hope that I have been able to provide my children an enviornement so that they can stand up and say.  There is no more.

Interagency Cordinating Council

There are so many councils and agencies and committees it is hard to know where you want to pour your energies.  At first I was afraid that no one would ask me to participate in anything, and now I am trying to set my limits and figure out how to draw lines.

This Council is put together by the Governors Office. It is designed for all agencies concerning the State and disabilities to unite together in order to help the Governors Office, make choices based on the needs explored and identified by this particular committee. It specifies that the parents on the board, MUST have a child with a disability and the child needs to be younger than seven.

I had a good friend Jenny, that suggested me for the Council. I filled out the application and was accepted last Friday.  They only meet every other month, and then in the meantime there are committees with in the council that you can sign up for.

I am so very excited about this.  I have secretly wanted this for a long time.  This committee actually has power.  Power to make effective changes in policy that directly effect my family as well as our friends.

Health and Human Services Legislative Appropriations Committee

I am ashamed to say that I didn’t have a very good idea of how things work, legislatively. That though has become a part of my Education along life’s highway.

In the State of Utah, each session there are committies and subcommitties formed.
Collective committees that have members of both the senate and the house. These committees have the enormous responsibility of listening to the agencies, people, and entities involved in each portion that consists with in the realm of involvement of that specific committee. As far as Appropriations.. (that is WHO gets WHAT money that is collected from taxes, ect) they are too big to deal with everyone, so they form SUB committees in order to deal with the influx of persuasion.

So Health and Human Services of course is a big one, and they like many others have a sub appropriations committee.

Both DSPD and Early Intervention fall under that category and both are something that I am extremely passionate about. Some days these committees have set aside time for program directors to come in and discuss their issues. Other days, they listen to public testimony.

This is where this committee comes into play for me. I spent a couple of days listening to the testimonies of entities and program directors. I was surprised by how many things there are out there, begging for money. The Birth Defect Network, was one that I feel needs to be funded. They are asking for 375,000, to help them facilitate the collection of Birth Defect Data, and public education. I was compelled by the speaker who was a very neat Doctor who took time away, in order to try to persuade the legislature to give them the funds.

I honestly think, if I lived closer and had the resourses to keep Ethan occupied, I could sit there every day, and listen. It was very interesting. I loved it.

Well, on the day for public testimony I tried to buck up all my fears, and I put my name on the list. This specific day, is when Early Intervention was making their big push. I put on my best black pant suit and a magenta button up blouse, and headed to the capital with a great deal of my friends to testify about the positive effect that Early Intervention has had on our families.

I did it. I was couldn’t believe it. I swallowed my nervousness and did it! Each person got two minutes, and I used all of mine. I started out with a quiver. I took the same collage of pictures of Ethan, that I handed out at the reception. I held his picture up, and then started talking. Once I got going, I think I did okay.

It was a great experience. I hope it has an impact. I hope that collectively we persuaded the committee to fund the request submitted by Early Intervention.

The Deseret News ran this article on it.

I am learning, my friends, learning and even more learning!

The Coalition for People With Disabilties Legislative Reception

Each year the Coalition of People with Disabilities holds a legislative reception.

What is that? Good question. Because before Ethan was born, I would have NEVER known anything about a coalition for anything, let alone for disabilities.

This is the second year I have gone, and this year I was far more prepared having had experienced it once before, than I certainly was walking in last year totally blind.

This group of professional people pulls together this reception each and every year, and invites the house and the senate Representatives to this reception where there are drinks and food available, as well as the disabled community or those that work with the disabled. They want to provide a casual environment in order for leaders to hear the voices and needs of the community.

This is held at the State Capital at the end of the day, usually in the first few weeks that congress is in session.

This year, I took pictures of Ethan, held them out to my local leaders, and delved into conversation expressing how much certain programs have effect my family and how much they are needed.

This is HARD for me. On so many levels.

I have always believed that we are in charge of taking care of our own.

That the problems and issues concerning my family have always been mine to deal with.

I never thought I would need public assistance.

One of the hardest things for me, in this entire experience with Ethan, has been learning the tough lessons, that this is something I can’t do alone.

Let me delve further.

Some of the things I have never mentioned on-line have been some of the hardest lessons.

When Ethan was born, we were uninsured. Not really but, kind of between insurances. We quickly got that aspect taken care of, and were releaved that we only had a 7,000.00 price tag to worry about. Our insurance kicked in, and I felt a sense of relief that made the NICU much more palatable. However, on day 57 a very nice gal from finance came and sat down at my bedside. She explained that we had reached our life time pay out cap for Ethan.

Already? I was beside myself. We had reached the 2 million dollar pay out mark. In 57 days.

Now what? That is when I started applying for medicaid. I had no idea at that point, about Medicaid. But, I would learn.

After we got home from the hospital, we were hooked up with Early Intervention. Another “Program” This service is part of the IDEA act, that provides health services for children birth to three who have disabilities. There are fees for these services, on a sliding scale, and are generally covered by insurances. Early Intervention provided Ethan with, Vision and Hearing therapists and support, Deafblind services, Occupational, Physical, Speech, Communication and Aqua therapies. Weekly. But there is a lot more to it than that. Not only did they teach Ethan, they taught me. They taught me tips and strategies on how to best help Ethan not just grow, but flourish. I really can’t imagine having brought him home with out receiving help from anyone. I’ve educated myself, done all the things that I have thought I was supposed to do, yet… I am at a total loss as to how to help my own child.

Someone asked me once how different was it, between Ethan and your other children. I found this question interesting and have struggled to come up with a clear answer to it. Basically I think I “reacted” to him very naturally. However, when you have a child that is different. That can’t access his facilities, he does not naturally respond to the world, the way my other children have. I didn’t know anything. I was totally lost. Can you imagine having a child.. that you didn’t know how to help? That you don’t even understand how to do even his basic cares?

Early Intervention saved me. They tought me everything. What to notice, how to respond, how to coax responses from him. They taught me how…

Our insurance issues became a catastrophic issue. We went for periods with out Ethan being on any insurance, then I could get him qualified for some portions of Medicaid. Luckily I have a Doctor that understands and he has helped me navigate my way through this shark infested moat.

If your child is un-insurable, and trust me, once they reach that lifetime pay out cap, that are completley uninsurable.. you don’t have a choice but to figure out a long term way to have them on Medicaid. There are NO other choices.

So you can choose. Do I , limit my family income so that we can financially qualify? Or, do I try committing fraud in order to qualify? Or, do I pursue waivers that allow a family’s income to not be taken into consideration.

Well, I chose the latter. The way this is facilitated is through the Department of Services for People with Disabilities. They, after determining disability have a wait list. We waited Two years and eight months, and were finally taken off the wait list. This was HUGE. VERY VERY BIG. Some people wait, years and years and years. It is horrible, how long people have to wait.

I have learned through my experiences that if you have a child with a disability (or two, or three or ten) you can NOT raise them with out help. No matter what your income level, no matter your training or education. No matter how good of support system, no matter how healthy your family or marriage… it is IMPOSSIBLE for one family to do it, with out help.

I hate that I have needed it. I hate that I am not nearly as self sufficient as I once thought I was. I hate that it was so hard for me to advocate for. These lessons have been very hard for me.

So, back to the reception. So, I took pictures of Ethan, I walked around and discussed our situation and our experiences with the legislature members that were in attendance. This year, I even approached those who do not serve from my district. I said I represent families in your district who coudln’t be here tonight. It wasn’t nearly as hard this year, as it was last year. I was happy that a few people said, “Oh I remember you from last year”

I can’t express to you, how important I think it is to really get to know your local leaders. Especially state Senators and Representatives. They really are concerned about our families or at least most of them from here seem to be.

Yet again, this is another one of those key lessons in life that have come at the hand of my beautiful boy. I don’t know how I ever got so lucky.

Parent Mentor

My role on the Zero to Five Initiative committee is being a  parent mentor.  All of the new families that will receive the mental health services through this group, will be sent to me.  I will help them out, by mentoring them. Helping them identify programs they can benefit from in our local area, and basically offering them support.

Through my experiences with Ethan, I can certainly say that I have learned about the services available and NOT available in this area.  Yet, me? Being a mentor? Um. yipes.

Well this last weekend, I attended a training conference that really taught us, some good tips and ideas for being able to do this kind of thing.

The class was for all kinds of parents they have hired to do this.  None of us, at all had the same experiences. It was almost a surreal experience to hear the tales from the other parents. There is much suffering in this old world. Tales of horror, I heard, that make my sorrows and hardships look like a cake walk.

We spent three days together, learning strategies and procedures that will help us facilitate the parent mentoring part of this initiative.

I am excited about this. I really am.  There are so many things out there, that people simply don’t know about.  I really do think that having someone to point them out and set you on the right track to getting things that you need is a VASTLY important part of the puzzle in this arena.

Zero to Five Mental Health Initiative

At the end of November, I received a phone call from a good friend of mine, Jennie Peck who is a marriage and family therapist and associate professor at Utah State University. We as a family worked with her, through our Early Intervention services.

She asked me if I would be interested in participating as a team member in a new project. As she explained the project to me, I instantly knew that yes, indeed I would be interested.

The Zero to Five Mental Health Initiative, is kind of a wild animal. Any thing that has to do with federal or state money, is always a wild animal, I have decided.

The Project Outline
        The problem identified.

Utah as well as most states, have a problem in the fact that a majority of the State is classified as rural area and yet most of the people live along the Wasatch Front. This makes it impossible to provide appropriate care to families in the medical arena, due to the mileage and traveling constraints.

When you are a Medicaid Provider, that does counceling for Mental Health Services, you have limitations. You can only provide services to those who live in your specific geographical location. This poses quite a problem for intricate specialized care for infants with mental health issues.

The State of Utah only has about four qualified specialists in this field. They all work out of the same office, and are highly respected and considered the best. However, the office accepts Medicaid, so this limits them to being able to treat children/infants from getting accurate and quality that live outside of their service radios.

Addressing the Problem

1) Training Pediatric Professionals through out the rural regions, and give them the tools they need to properly identify and treat, infants and children with mental health issues.

2) Providing awareness to the Community about Infant and Children Mental Health Issues.

3) Providing support for families who have children and infant with mental health issues.

This problem was identified and proposed to the Utah State Legislature and they saw fit to fund a pilot program to explore the effectiveness of this proposal.

Four rural Utah area’s were picked to do this pilot project. Brigham City, Vernal, Cedar City and Price. Teams from each area were chosen.

A parent, A Mental Health Doctor/Professional, A Early Intervention Team Professional, A representative from Head Start and a local Pediatrician or Primary Care Doctor.

Our Brigham City team gathered together a couple of times in order to identify local problems and issues. I was pleasantly surprised to find Ethan’s Pediatrician on our team, Jeanie is the Early Intervention Professional. Everyone else, were new faces to me.

So the first of December I headed off to New Mexico to attend the annual International Zero to Three Conference that has a slew of classes specifically addressing all kinds of health and service issues for children under three.

I feel so fortunate. What an experience. I could write all day long on the things I learned at this conference. What was the most resounding though, is that I am not alone in my confusion and fright, in regards to my child and knowing “what” to do, on all plateau’s.

It was a long conference 4 days, and I didn’t really know anyone there. Jeanie was there, but she was with life time friends, and was busy most of the time. I was surprised that I did know a few people. But no real “chummy” type friends.

We meet as a team twice a month and I really think we are getting close to obtaining some of our goals. This has been a real experience for me, and I am looking forward to getting somethings solidified and in practice.