State Services for Miracle Man

For about the past year I have been working on getting Miracle Man services through our state. He already receives services through the local channels, and attends a special education preschool program. He goes there every day for about 4 1/2 hours. While he is there, he receives many different therapies daily and throughout each week. Those therapies are all geared towards helping him grow socially, cognitively, and physically.

At the state level, there are programs out there that can assist him in ways that are above and beyond the scope of the educational program. One of the ways our state helps families who have children with disabilities is a Medicaid Service Program. I am not sure how it works in other states, only how I am experiencing it in my state.

In any case, through the Medicaid Service Program, children with disabilities whose families are at a certain income level can receive the state services and programs.  If you do not meet income eligibility, however, there is another option in order to receive services for your child at the state level. This is called a Medicaid Waiver Program. To receive any kind of service through this avenue, you first have to apply for the Medicaid Waiver.

I started this process in the spring time of last year. It is quite a lengthy process, but once we get through it and can start receiving services, it will totally be worth it! So the first thing you need to do in my state is go through a "front door" program. When I did this, it was before they implemented new regulations. I got in just in the nick of time. From what I hear, it is quite cumbersome now. In any case, for me the "front door" program consisted of meeting with somebody from the Office for People with Developmental Disabilities (OPWDD). At the meeting, the gentleman that I spoke with gave me paperwork and outlined for me a basic idea of what the program can do. After that, I was sent on my merry way to start contacting agencies that provide Medicaid Services and get a Medicaid Service Coordinator.

The Medicaid Service Coordinator does 90% of the paperwork, with my assistance. Sometimes acquiring a Medicaid Service Coordinator is challenging, especially for the younger children. I called around to several agencies and asked to have a Medicaid Service Coordinator, but many of them didn't have any availability. At the agency that I'm with now, I was actually put on a waiting list initially.

Every time you contact an agency to acquire a Medicaid Service Coordinator, the intake person gathers information about your child to see if their agency can support your child and service her or him properly. So for each agency I called, it meant that I would be spending at least an hour on the phone talking with the intake person explaining Miracle Man's complete social and medical history. And at the agencies where I went a little bit further, I then had to repeat the entire same story with another person.  I spent quite a bit of time on the phone in the summer and then again in the fall. 

In the end, the agency we were waitlisted at was really the best fit our family.  Luckily, by the time I had done some of the legwork with the other agencies, our agency had an opening for us. And, for those of you in the "know", I never actually got as far as the start of the application with any of the other agencies.  It was just a lot of bureaucratic red tape.
 

So all of these things take time, and several months later, in the middle of the fall, I was assigned a Medicaid Service Coordinator who would help me get the Medicaid Waiver application completed and sent out to the state. I've been working with this lovely woman for the past several months. She fills out all of the paperwork, but we meet several times for several hours each time...going over history, medical needs, social needs, everything that has to do with our little guy. Then she goes back to her office and fills out all of the paperwork.  She then contacts me with changes that need to be made, or questions that she has. I believe that we are nearing the end of the application process, and then we will be sending it in and waiting to hear back from the state.

Once the application is approved, it will still take some time before we can start receiving some of the services that we are seeking to meet Miracle Man's needs. I can't wait until that happens! One of the things that we will receive is some respite. But, it is going to be several more months before all of that can take place. I will explain how respite works in another post.

For now, though, I am in pain, and completely exhausted, so it's off to bed for me. It was a long, very challenging day. Good night all!

Wishing you wonderful dreams,

Marathon Momma

Momma Bear and The Sensory Kid

Miracle Man has always had sensitivities and "quirks". For instance, the textures and temperatures of foods affect whether or not he will eat them.  He refuses to eat chunky or chewy foods, but likes softer textures.  So, I can get him to eat hummus and guacamole (I know, right?!?!), but I have a hard time getting him to eat avocados, beans, or apples.  He will eat smooth yogurt (even plain greek), but if it has real fruit in it, he won't even let it get past his lips.  If one smidgen of chunky food gets in his mouth, he spits it.  Right. Back. Out.

When he was much younger, I could not vacuum the living room or turn on any appliance that sounded anywhere near  as loud as a vacuum.  If I did, he would start shrieking and screaming his head off. It scared him to death! So I used to vacuum around his sleeping schedule. Luckily, most of the time...if he was sound  asleep...he would continue snoring away and I  would be able to get the crumbs and dog hair off the floor.

It could get tricky, though, on days when I needed to vacuum several times throughout the day...instead of only  during naptime. You see, we had this rug that seemed to magnetically or cosmically attract every.single.speck  of dust in the entire  house, plus the neighbor's house. Tragically, it used to need to be vacuumed sometimes up to three times a day! With Miracle Man's sensitivities, if I needed to vacuum while he was awake, I felt like I was      tOrTuRiNg      him.  He would scream and cry hysterically, and it was extremely difficult to soothe him. Typically, when he was upset like that, he wouldn't calm down for at least an hour.  So, as a busy mom already strapped for time, sometimes I had to choose between keeping the rug clean of debris and the meltdowns that ensued, or letting go of the mess and keeping Miracle Man feeling "safe".

As the vacuum-phobia-screaming thing continued, it also escalated.  There came a point that whenever Miracle Man even saw  the scary-loud-sucking-up-apparatus, he would fffrrrreeeeeaaaaakkkkkk out...before I even turned it on!! We needed to find a solution so that I could vacuum with Miracle Man around.

So, with the help of his therapists, we tried to desensitize him to the sights and sounds of this machine that I , for one , am in complete awe of.  I must digress here for a moment because this is a topic that I think about all.the.time...I absolutely love vacuuming!  Well, not the actual lugging around, sweating, hard work part of it.  But, I am always fascinated by how AMAZING that invention is!  I mean, whoever came up with that thing is like my BFF for life!  I marvel at its awesomeness whenever I plug it in and begin sucking up dust, cheerios, powdered sugar, cat fur, cat puke, crazy loom bands.  Ooooo!  I love ,  and I mean LOVE vacuuming up those !  It gives me this twisted sense of satisfaction to just...zooooppp them up!  Gone!  No longer all over the floor!  Hehehehe!  (insert evil grin here)  You simply cannot deny that the vacuum is totally AWESOME! 

Anyway, back on topic...so to desensitize Miracle Man, we would have him in one room with the therapist and me in another room with the vacuum.  We would start by telling him that I was going to turn the vacuum on and then gradually bring him closer to me.  Each time a therapist was here, we would work on this, getting closer and closer to me, and then finally bringing him into the room where the vacuum was. In the beginning, we also would cover his ears when necessary. Over time, we would have successes, and then failures. But for the most part, the desensitizing worked. I was once  again  able to turn on my fav machine and go to town on those dust bunnies, dried up pieces of scrambled eggs, bits of pizza crust, Lego pieces (sacrilegious, I know), you name it!

We were so successful, in fact, that for quite a while now, Miracle Man has been able to handle the sounds of things like the vacuum or the blender like a champ, especially if I preset him (tell him ahead of time that I'm turning it on). I usually also preface it with a countdown of three so that he knows exactly when the noise will begin.  But our success was so profound, I could even vacuum right.next.to.him! 

Over the past month and a half, though, he is having a tougher time with his sensory processing. He is back to screaming and shrieking when the vacuum is on.  And it seems like every day, Miracle Man is having a harder time with noises. He has begun covering his ears for every loud sound he can hear, like the garbage truck going by while he is outside.  And while he is covering his ears, he is telling us, "Loud.  Loud.  Loud." 

Too, we just got a door alarm for the house because we're worried about the kiddles finally escaping to find a better set of parents. Naturally, whenever the alarm goes off, Miracle Man covers his ears and says, "Horn. Horn. Horn." It takes him several minutes after the "horn" is done before he stops covering his ears and he can move past the disturbance. His hearing (or his processing of what he hears) has gotten incredibly sensitive! 

On Father's Day weekend, we tried bringing the whole family to the fireworks.  Big Mistake.  Big. Although we had anticipated some  anxiety, we weren't completely prepared for his reaction.  He shrieked and screamed so badly that it was clear to us he was being Harmed.  We kept trying to move away from the blasts of beauty to find a better place to be; a place where he couldn't see the lights.  We ducked behind a tractor trailer next to the midway of the town fair we were at.  He continued to scream, and he looked...Terrified!  We covered his ears and moved still further back. Now, you should know that when Miracle Man has a seizure, his eyes get all funny-looking and his pupils dilate.  His eyes just look so...different . It makes him look like a different child. Well, at the fireworks that night, he started to get "that look" all over his eyes. We were very nervous, and he was so distraught, that we ended up heading to the car.

Safely inside the car, the booms and bangs were muffled, and the lights were hidden from view.  Miracle Man began to settle down a bit, but he was still fretting.  It was very scary to see him like that. And even though I had anticipated him having a hard time, I didn't expect him to freak out quite so badly.  My nerves were shot.  Momma Bear had had that fight or flight reflex.  It took a long time for the adrenaline coursing through my body to subside.  I have since decided that we need to get him a pair of those sound-deafening ear muffs.  We will probably also use sunglasses when there is so much visual stimuli in the future, as well.  But, man!  Times they are a changing for our family!

So, the next day, we were headed to a car show and Prince Charming wanted to wash our car before going there. We brought it into one of those automated car washes, and within seconds, Miracle Man was having the same expression on his face and that same shrieking-screaming-I'm-terrified reaction. It was so bad that I had to get out of my seat and climb into the back seat with him where I could cover his eyes and his ears to block all of the sensory stimulation. Again, he had that same "look" in his eyes that he gets during a seizure.  And again, there was a very worried momma.  Naturally, once we exited the car wash, he calmed down.  It took quite a bit longer than that for his momma to calm down~especially since it was the second day in a row! ;)

It seems these episodes are becoming more and more frequent.  For example, we recently went out to an old-time ice cream shop. There was a painfully long wait with the kiddles, and then it was finally our turn to be seated.  The waitress brought us over to our table and above our table was a fan. The way the fan was positioned, it broke up the light on the table that was coming from the lamp next to the fan. This setup created a strobe light effect and, once again, Miracle Man started to "freak out".  I thought he might have a seizure.  Luckily, I spoke with the couple who had been seated next to us at the same time.  I briefly explained the situation and they had no problem at all changing tables with us. We were very  grateful  to them!  We were able to sit and relax a while. And we definitely enjoyed our marvel-licious ice creams from the safety of our new booth!

Now, it's not just his hearing that has become super-sensitive.  So has his sight.  The lights in our house that didn't use to bother him at all, for instance, suddenly do. One morning we laid him down on the living room floor to change his diaper, and the light overhead was bugging him.  He was starting to get upset to the point where we had to turn off the light to complete the diaper exchange.  There have been several other "insignificant" moments where Miracle Man has reacted to lights lately. But none of them interesting enough to continue this paragraph. So this paragraph is done.  The End.  (I feel like a second grader. Lol)

I have always felt like I've been on hyper alert with Miracle Man. But lately, it seems like I have to be much more aware of sounds and lights and things that could upset him. That also means that bringing him to things like the movies is not likely to happen anytime in the near future. As I said earlier, I will probably be getting the noise-deafening ear muffs sometime soon, but in the meantime, I have to be very vigilant about what he is exposed to that might set him into a panic.  I am also anxiously awaiting a return phone call from his neurologist to see if he has any more input for us.  Until then, I am Momma Bear and I wait in the forest...watching from afar (but not too far), allowing him to navigate his world with some independence, but ready to attack those lights and sounds at a moment's notice!  RoAr! 

Yours from the Forest of Mommyhood,

Marathon Momma

Paperwork and Other Things

If you don't want to read my wallowing in self-pity, then skip over this post.  Because the reality is that today is a bad day.  Actually, if I am being honest, it has been a difficult several months.  I am constantly overwhelmed and exhausted.  There never seems to be much of a break from the stress.  Being a mom of a child with special needs is far more tiring than I would have ever expected.  It is all-encompassing, from the physical to the mental to the emotional.  And that doesn't even take into account my other two lovely cherubs.  And, unfortunately, I am not super human.  I do not have the time, strength, and energy all  the  time  to do  everything that needs to be done for Miracle Man, immediately when it is required.  I try to do my best each day and tackle several different tasks beyond the daily cooking, cleaning, caring for the children.  But I am only human.  And there are only so many hours in a day.  And I only have so much strength and energy.

Miracle Man has been going through a lot of medical testing.  Too much to blog about individually.  I just don't have the time to go back and write up quirky or sentimental posts about each of his experiences over the past few months.  So I have decided that I am not going to try.  This time in our lives is just too crazy busy.

In addition to all of the medical testing (still hoping for the answers that are difficult to come by), we just recently made the transition from Early Intervention to Preschool Special Education.  I have to say that I am in shock at how involved it is to transition, and how many stacks of paperwork have to be completed.  And, although he began in his new preschool program yesterday, there is STILL more paperwork to fill out.  There is so much, I actually have to ration it out over the course of this coming week just to accomplish it.  And I am the only person who can do it.  But what if I don't want to fill out ANOTHER social history????  This is the third one in less than a month.  And social histories are about a gazillion pages long...and they are not fill-in-the-blanks or multiple choice questions, people.  They are essays.  Pages and pages of essays. To tell everyone in the entire universe EVERYTHING there is to know about my sweet little guy.  All of his medical history.  All of the goals we wish to accomplish.  All of our concerns about him (that one is an enormous list).  All of his likes/dislikes/relationships/reactions to stimuli/waking times/sleep times/eye blinking times.  Okay, so that last one is a bit of an exaggeration.  But, really, that is how it feels.  And to have to write it all over and over is "over" whelming.  Naturally, I do it.  And I complete it carefully and thoroughly.  But I wonder why they can't just make it easier on parents of special needs kids. Parents who are already physically, mentally, and emotionally drained.  Parents who are strapped for time, but still want the best for their child.  You know, like why isn't there just one universal social history form that gets copied and passed around to each school and agency????  I don't know.  Maybe I am just too intelligent for the system?  Haha.

Mountains of paperwork.  Always.  That's the stage we are in.  As if the transition paperwork weren't enough, we recently received a provisional qualification of disability from the state.  Which means...guess what?!?!  More paperwork.  Yup.  I could swim in a sea of paperwork and tasks right now.  Just for Miracle Man.  It is fabulous that we received this letter of qualification.  Truly it is.  It will help us access many different programs that are intended to make our lives somewhat easier.  But there's the whole "red tape" thing that gets in the way a bit.  Calling programs, filling out applications, researching the resources.  It.is.all.too.much.  I need a secretary.  Heck, I need two secretaries!  And it really is no joke.  I am actually holding off on looking into all of those programs until the preschool transition is completed and the last bit of paperwork is handed in and off  my desk!

And then there is the emotional toll of transitioning to preschool.  Spending a year, or two years, or more working with therapists who come into your home to help and love your child is wonderful.  It is a connection that you make that feels like family.  The therapists help you and your child with their whole  being .  And you come to rely on their expertise in making decisions for your child.  But more importantly, you begin to rely on their friendship and the sense that you are "in this together".  And then, 2 years later, your child transitions to preschool, and BAM!  No more.  The connections, the extended "family" you have made together are severed.  Maybe not so drastically or completely (gotta love Facebook for that).  But still.  It will not be the same.  It is unnerving.  It is sad.  It is hard.

Aside from Miracle Man's Mount Everest of paperwork, I have just enrolled Chub-Chub in a nursery school program for two days a week.  This means even more  paperwork.  Having Chub-Chub attend nursery school will be so great for him.  He will get to play with other children.  He will learn.  He will experience new things and new people.  And he will be at Miracle Man's school, too!  They are in separate programs and classrooms, but they will get to see each other on the playground, which is something I am very pleased about.  Yesterday, I was told that Chub-Chub went right over to Miracle Man and gave him a hug and rubbed his head.  So sweet!   Of course, we are currently going through a very rough bout of separation anxiety on Chub-Chub's part.  And yesterday's drop-off at nursery school was no walk in the park.  It was more like a frantic sprint in a dark alley with a gang of thugs following closely behind.  But, Chub-Chub being in school will help me out.  I will eventually get a much-needed break from my lovely kiddles, once everyone settles in and I have crossed all t's and dotted all i's.  And maybe I will even find some "me" time.  For now, though, it's a transition.  And more...paperwork.

Then there is me.  Somehow I fit into this equation, too, right?!  And right now I am going through some very difficult decisions and transitions.  My health has taken a turn for the worse.  I struggle daily with the pain and the fatigue of fibro, but lately, because of where my pain is and the intensity of it, my doc believes that my scleroderma may be progressing.  She also gave me the results of my most recent pulmonary function test and there is decreased functioning in my lungs.  She is tweaking my meds and therapies and we are hoping for the best.  But she is also keeping me out of work longer.  For at least a year.  And I am struggling with coming to grips with that.  I don't know when or if I will be able to go back to work.  I miss it terribly.  I miss the students.  I miss having my own group of sweet children to educate and nurture.  I miss studying fun topics with the kids, and going into more depth because they are fascinated by what we are learning about.  I miss being silly and having fun with the children.  I miss my colleagues.  I miss being part of the building; the camaraderie, the support.  And now I have also been told that my job has been moved to a different building.  Which means that I will most likely never again work with the people I knew and cared about.  And I will have to clean out my classroom.  It feels final.  Even if it isn't.  It feels  that way.  All of the hard work and effort I put into my education and my classroom has to continue to be put on hold.  And that is very sad.  And scary.

I know there is a light at the end of the tunnel.  And I can sort of see it up ahead in the distance.  But the tunnel is dark. And long.  And I am crawling through it.  One knee at a time.  Right now, I am feeling very emotional and fragile.  And I am relying on anybody and everybody who offers kind words or actions of support.  It is what feeds my soul and helps me keep going, even if just for another minute.  Respectfully, I am not looking for any advice on how to handle any of this, no matter how well-intentioned it is.  I can and will  figure it all out.  I just needed to vent...and I did warn you ahead of time.  I am having a low point and it is a bad day. :(

Sorry to be a downer,

Marathon Momma