Hair from The Dog That Bit Her: A Love Story

      

      I am sure if Nadiya's Allergist read this article he would want to shake me.  That is probably why I haven't told him that we got a dog yet.  Sometimes as a parent you have to weigh the risk of something with the benefit.  David and I do that a lot with Nadiya.  Her case is not black and white but every shade in between. I think also you have to look at a situation and realize that there are always exceptions to the norm.  Many doctors have a difficult time accepting that maybe rules don't always apply in every single situation.  At least that is what I think.
        Nadiya tested positive for dog allergies.  I did too for that matter though I have never experienced a symptom from a dog.  Nadiya did.  Anytime she was near my sister's over sized Basset Hound her face swelled up in hives.  It was pretty bad.  There were other breeds that caused an outbreak of hives wherever the dog's tongue touched her.  There would be a strip of pink swollen bumps on her arm or the side of her face where the dog had licked her.  She seemed to also get itchy.  Her eyes would get very red and she would keep rubbing her nose.  The interesting part is that this only happened with certain breeds.  That is where the Allergist had a problem with our story.  I will say he did believe me and he tried to understand how this could be though he firmly believed extended exposure would prove positive allergy symptoms with any breed.  I hoped not because I always knew I was going to do it anyway.
  

Clara

          I spent years conducting my own clinical trials while nervous dog owners allowed Fido to lick all over Nadiya.  Armed with Benadryl we'd anxiously wait to see if there was an outbreak of hives.  Sometimes it did cause a reaction but sometimes it didn't.  Basset Hounds seemed to be the worst of all with Beagles and Dachshund Hounds causing a much less reaction.  There was also a mild reaction to Labrador Retrievers and Golden Retrievers.  However, there were many breeds that induced no reaction at all such as German Shepherds, Pugs, Several Terriers, Boxers and a variety of mixed breeds. This was interesting though to an allergists it may not make sense.  Our allergist said that it is not the breed that one is allergic to but the dog itself and if Nadiya lived with any of the "safe" breeds she was likely to have symptoms.
           I was not convinced.  I had high hopes of Nadiya having a Therapy Dog someday to detect and alert us if Nadiya had a seizure in her sleep.  I explained this to the Allergist and he understood.  He suggested that we wait and see what happens and should Nadiya need desensitization shots then we would deal with that then.  It made sense.  He wasn't saying, "Don't ever get a dog ".  It was more like, "If you must get a dog we will deal with any allergies if they occur".  At least that is the way I chose to interpret this. 
 

Anastasiya with Clara in Nadiya's room

    I checked out many of the websites for assistant dogs and the outlook wasn't good.  Most would not give a service dog to a person under 16 years of age.  That would be too late since Nadiya has the potential to become unstable during puberty.  That is when we could see a lot of seizure activity.  One site was willing to give a service dog to a child but the cost was $30,000.  Now they would not necessarily charge a family for the dog but the wait would be long and there were no guarantees.  To expedite the wait a family could fund raise.  I can't imagine taking that on.  managing Nadiya 's case is a full time job that I must balance with the rest of my family obligations; I do have another typical child.  This seemed very unrealistic for us.  Most of the dogs were Golden Retrievers which Nadiya has had a reaction to.
            This was just research. Truthfully I was not eager to have a dog.  I could not handle the responsibility and I felt Anastasiya was too immature to help.  I did not want to be the one to care for the dog alone so we waited.  I needed to be ready.  I saw Anastasiya mature and take responsibility for her turtle and her activities and schoolwork.  I felt like our children were missing out on an opportunity that I had growing up.  I wanted them to know what it was like to have a dog but I wanted the right dog for our family.  I needed an intelligent and obedient dog who would improve our family life not strain it. This would have to be a careful and thoughtful decision.  Not every dog is good with a profoundly disabled child.  My friend Lisa recommended the Mid Atlantic German Shepherd Rescue (MAGSR) http://www.magsr.org/ which was where she had rescued her German Shepherd almost 15 years ago.  He had recently passed away and she was ready to start looking for another rescue herself.  The timing was good for both of us.

Anastasiya works with Clara.

        I started to think about how smart German Shepherds are and how trainable they are.  Nadiya had spent hours at a time on the floor with Lisa's Shepherd even when he was shedding.  There had never been a reaction. 
            I have always been partial to mixed breeds.  I think they are unique and have the potential of inheriting positive traits from what ever they are mixed with. Whenever the genetics are watered down so to speak genetic disorders that purebreds can have tend to be bred out in a mutt. I had hoped with a smaller mix the hip dysplasia that German Shepherds tend to get would be less likely to occur.  I also think mixes are really cute because of their unique and sometimes random appearances. 
           From the beginning Clara stood out to us.  David and Anastasiya especially liked her and seemed drawn to her.  We completed our application and turned it in.  The next day we went to a Petsmart where we knew MAGSR was scheduled to be.  We hoped Clara or some of the other dogs would be there.  No dogs were there but we were able to speak to two women who were volunteers from the organization.  When one of woman took one look at Nadiya in her wheelchair and said out loud, "Clara would be perfect for this family!"  I told her that we had put Clara's name on our application which was submitted the evening before.  It was then that we were told that Clara's foster thought she would make a great service or companion dog.  I couldn't believe it.  From a picture alone we were drawn to this dog and then we were told there was potential for her as a service dog.  We were excited but there were many people interested in Clara.  She had attended a lot of events and people liked her.  The ladies said they would contact the foster and the adoption coordinator and discuss our family and let them know about Nadiya.  Still it was out of our hands.  Our three references were interviewed and then we had a home study.  After that we were approved for adoption and Clara was brought to meet us.  She never left our house.  We loved her immediately and she bonded with Nadiya right away.
     

         We have had Clara for almost 5 weeks and I still can't believe we found each other.  At 10 months old she is very smart and already has many commands.  She is completely housebroken and is great with the kids.  She is protective of Nadiya and checks on her frequently.  Even now as I work in my office upstairs Nadiya is playing with a musical toy in her Rifton Chair.  Clara is sitting downstairs near Nadiya. I offered to let her come up with me but she did not want to leave Nadiya.  At first she was obsessed with Nadiya's breath because it smells of Ketosis.  Dogs can smell that and so they are trained to alert a diabetic if they reach Keto Acidosis.  It took some time for Clara to realize that is normal for Nadiya but it did highlight the potential for Clara to be an assistance dog.  A few weeks ago Nadiya had an unusual Absence Seizure that wasn't like the rest.  Clara barked at Nadiya and looked at David.  This is exciting.  We will put her through train classes and then look for someone who can help us train her to bark when Nadiya has a seizure in her sleep.  The possibilities are exciting.  Clara was definitely supposed to be a part of our family.  We had Clara assessed by a trainer and she will be skipping level o ne and going right into intermediate.  Then she will do the advanced class and end with the "Good Citizen" class for a certificate.  That will be the last step before service dog training.  She has learned many additional commands and walks nicely along Nadiya's wheelchair.  Clara goes to and from the bus with Nadiya and is excited to see her after school when she returns. 

Clara watching over Nadiya

 

      Strangely Nadiya has not had any allergy symptoms from this dog.  Clara has licked her face up and down.  One day Nadiya desperately needed a bath and Clara took it upon herself to start bathing Nadiya like a puppy.  Nadiya thought it was hysterical but other than her giggles there was no other reaction.  Though I was not happy about Nadiya sustaining a concussion at school, the fact that she was home for a week and a half when Clara first came to us was a blessing.  It allowed the two to bond right away and I think it helped Nadiya recover from her head injury and endure being kept out of school for so long.  It was a risk; albeit a well thought out risk.  I am glad that we did it because sometimes the very thing that could make a child sicker is the thing that makes them well.

Me with Clara and Lisa with her new dog Simone a German Shepherd Sight Hound mix.
Lisa is a former dog trainer and has given me a lot of advice and information.  Clara and
Simone met before they were adopted at an event for the rescue.  They were happy
to be reunited and chase each other at the dog park.

There are always some funny things that happen when you are training a dog.  I'm not sure who is providing more entertainment Cara or Nadiya!

 

 

 

 

 

 

Nadiya managed to get into Clara's crate without help.

 

 

 

 

 

I guess Nadiya thought she'd try out the dog bed.

 

 

 

 

 

We have since corrected this behavior but Nadiya seemed to like this.  Now Clara is permitted to wake Nadiya in the morning and put her to bed at night she can put her paws up on the side of her bed but not get in!

 

 

 

 

 

                                                                                   That's more like it!

It's All in the Bones: Update

     

     In my article It's All in the Bones I discussed the concerns with bone density and a disabled child.  I discussed the complications of the Ketogenic Diet, certain medications, and late weight bearing have on bone density.  Since my article was written Nadiya saw an Endocrinologist.  The news was encouraging.
               Doctors are concerned about middle aged woman who have low bone density and rightfully so.  A middle aged woman will go through menopause and her production of estrogen will decrease making the bone density problem worse eventually resulting in fractures if not treated.  A girl with low bone density will go through puberty where her estrogen will increase and she will rebuild bone.  In the meantime there are things that can be done to prevent fracture and further loss of bone density.
               A Dexascan alone is not an accurate test for a child.  If the child is small like Nadiya their bone age may be considered younger than her 9 chronological years.  If that is the case the Dexascan must be interpreted differently.  Doctors order blood work which helps to determine the bone age.  They also check the child's vitamin D level to make sure it is adequate.  They also do a bone age x-ray.  All of this information is then interpreted together to decide what the bone density is.  Nadiya was actually getting too much vitamin D so we cut that in half.  She will have the bone age x-ray and another Dexascan in the spring.  Additionally the doctor was very please with the weight bearing opportunities and the fact that Nadiya has never suffered a fracture even after her fall in the Kidwalk. 
               All of this is good news.  The key is adequate Calcium and Vitamin D supplements and sufficient weight bearing opportunities.  Children on the Ketogenic Diet long term should especially be aware of this.  If managed early the outlook is good.
             

A Heads Up on Head Injuries with A Disabled Child

    


Nadiya playing while in her Kidwalk

           A simple truth in life is that children fall and they are injured.  Of course this happens with some more than others but as parents we learn to manage this.  What about when a profoundly disabled child is injured?  That is a completely different situation that warrants discussion.  Specifically in this article I am discussing head injuries and concussion but the information can really translate into many types of injuries. 
              There were times where I felt a sense of relief and almost felt "normal" when someone from school would call and say Nadiya walked into a wall, desk, chair, door frame, or whatever while in her walker and bruised the side of her arm or her knee.  These minor injuries were indications that Nadiya was challenging herself and was making progress while obtaining harmless and typical injuries that children do.  I do not think there is anything wrong with that as long as they are common, reasonable injuries that are a result of kids being active.  It is concerning when a disabled child sustains and injury that is potentially dangerous and when it is a result of inadequate supervision or poor decision making on the part of the adult working with the child.

             Early in the school year Nadiya was playing in her Kidwalk at recess which in itself should not have been a problem.  In this case however the seat support had been removed from the Kidwalk.  Nadiya flipped the Kidwalk sideways and hit her head on the concrete.  Though her injuries appeared to be superficial at first, they worsened over a few hours as it became evident that she had suffered a concussion.

             Concussions happen but when it happens to a child who already has a great deal of neurological impairment it is difficult to assess and could potentially worsen their already impaired condition.  So what can you as parent's do?  In the case of a head injury there are several important pieces of information that must be gathered and assessed.  When your child is disabled and is unable to speak or affectively communicate what has happened, gathering facts can be difficult.   You must be your child's advocate and find out what has happened if you weren't there.  Below are some important questions you must ask the teacher, nurse, school staff, daycare provider, family member or friend who has reported the injury.

 How did your child fall?

    

Disabled children are more vulnerable
even during common activities while at 
           play.  Since the world does not often
accommodate we are rigging supports
and modifying all of the time.  Proceed
with care as to prevent unnecessary injury.
here I have a sweater stuffed in the front of the
 swing to tighten the space.  Still I pushed slowly
and carefully so Nadiya would not fall out.
 

If your child is mobile and they were running  and tripped and fell that information is different than if your child was walking with support and tripped and fell.  If your child was in a piece of Durable Medical Equipment (DME) you need to know if it was being used properly or if it failed.  If the equipment failed the accident must be reported to the vendor and the manufacturer of the DME.  In Nadiya's case it was not being used properly.  This was an important piece of information because if the walker had spontaneously flipped that would have been a major design flaw with the equipment.  The seat was removed to create therapeutic opportunities for Nadiya to improve her walking with limited support.  This was to be done with one on one supervision.  The problem in Nadiya's incident was that on a playground during recess was not an appropriate time or place for Nadiya to be doing this.  The ground was uneven and there were several children creating distractions for the staff.  Nadiya fell with the force of the Kidwalk sideways.  Where the cage of the Kidwalk somewhat protected her body there was nothing on the side to protect her head.
           You need to have these details so that you can reconstruct the accident for the doctors.  Did your child slam into another child while running?  Were they pushed by another child?  did they fall off of a slide or swing?  Did they fall out of a chair?  These facts are important.


Where did your child fall?

            The surface and density that the child fell on is important.  Falling into a wall will do a lot less damage than falling on a concrete floor.  Was the child indoors or out?  Did they fall on another child or pavement?  All of these things matter especially when assessing the injury.  Some surfaces are more forgiving than others.
          
From how high did they fall?

            There is a big difference between falling off a bench and falling off a slide especially when assessing a head injury.  If the child were sitting the fall would be from a lower distance than if they were standing or climbing something.  You will need to tell the doctor from what height your child fell.  Even falling from the height of standing can result in a concussion.   

Did they hit their head and if so on what?

            This is very important.  Nadiya hit her head on the concrete.  I had to ask this question specifically.  Not every person who reports an accident reports it accurately.  Sometimes the individual reporting the accident is upset and scattered so they do not give all of the facts.  Sometimes they are trying to protect themselves and do not want to appear irresponsible or negligent.  You are talking about your child's health and well being so you may need to be the advocate.  This question must be answered honestly and accurately. 

What did the nurse's evaluation and examination show if at school?

         If the injury occurred at school the nurse will assess your child. The nurse may provide an adequate assessment at that time. What you must understand is that the observations made then could drastically change over the next few hours.  If your child is disabled the assessment will be challenging to begin with. 

•  The nurse will ask the staff if the child lost consciousness.  To me that is a big deal.  I would take Nadiya to the ER immediately if she lost consciousness from a head injury.  She did not in this incident so the nurse reported no loss of consciousness.

• They will check to see that the child's pupils are equal and reactive.  This is, of course, if the child's baseline has the pupils equal and reactive typically. If not then this will not help with the assessment of the head injury. The nurse specifically asked me if Nadiya's pupils normally were.  They are.  The vision problems that Nadiya has do not affect her pupils.

•  The nurse will look for vomiting after the head injury.  That can be a sign of intracranial pressure.  Nadiya did not vomit.  

• They look for blood in the ears or pooling of blood behind the ears which can be a sign of intracranial hemorrhage.  Nadiya was ok.

These are the more severe signs of complications with a head injury and they warrant an ER visit for any child but especially for one who is already disabled.  Nadiya did not present with any of these signs.  Additionally there are some more subtle signs that the nurse will assess for.

• They look for excessive tiredness or lethargy.  Well you can tell if your child is over tired or lethargic even if they can't speak.  I think that is an easier one to look for. Nadiya was not showing this at school.  It wasn't until a few hours later that she presented with this.  

• They look for headache. In Nadiya's case her threshold for pain is very high and she is nonverbal so that is difficult to assess.  She did not appear to have a headache at school.  If she did she did not complain about it or show any signs that she had a headache.  

• They assess balance.  On a normal day Nadiya does not have very good balance to begin with.  That was very difficult to assess. 

• They look for sensitivity to light.  That is fine if they are having a visible reaction to the light.  A nonverbal child cannot say the light is giving them a headache or that it is too bright.  This did not seem to be a problem for Nadiya at school. 

• They assess the area of impact.  Nadiya's bump was visible but small while she was at school.

             In Nadiya's case the nurse checked on her twice and still did not see any changes in these symptoms.  Nadiya was acting like her normal self and so I was told it wasn't necessary to pick her up.  Nadiya came home on the bus.  So what I have learned from this is a head injury for a disabled child is intense no matter what.  Go pick them up and observe them for changes.  You know your child better than anyone and you know what their baseline is.

             Once Nadiya was home my friend and I started to see a difference in her presentation.  About 2 and a half hours had gone by since the fall and now she was having significant changes in her baseline.  The bump on Nadiya's head was large and swollen like an egg.  She was turning away from the light and closing her eyes.  She was becoming sleepy and lethargic.  Then she began to whine and fuss which Nadiya never does.  It was obvious she had pain.  When she walked her gait was worse than usual with a lot of stumbling and poor stability.  I believe she was dizzy. 
       

There is a reason Nadiya requires adapted seating. 
This is what happens in a typical chair!

         David and I took her to a concussion clinic but their first instinct was to send her to the ER at Johns Hopkins where her neurologist is located.  We explained that should the ER staff want to do a CT scan they would have to sedate Nadiya and then they would feel the need to admit her for observation since they sedated her.  We explained that we would do this if necessary but we wanted to make sure it is necessary and avoid such extreme measures if possible.  It was then that the team consulted and agreed that she did not have the more serious symptoms and so sleep and rest was the best thing to heal her concussion.
             Nadiya missed a week and a half of school and slept 12 or more hours a night.  Because Nadiya has a sleep disorder consistent with Lennox-Gastaut Syndrome she needs to be medicated at night with two different medications for sleep.  As a result I had to check her every three hours that first night to make sure she stirred.  After that we just let her sleep as much as she needed to checking on her before we went to bed. 


Nadiya at a roller skating party.  She was able
to use her Kidwalk out on the rink with
my supervision so she didn't run into anyone.
Nadiya had a wonderful time being included.

      If you find yourself in this situation you need the facts.  Speak to as many people involved in the accident as you can.  The nurse was not told that the seat was removed from the Kidwalk.  It wasn't until I spoke to the teacher that I learned that.  The teacher was not there during the incident but she was able to provide that information.  The principal was able to interview the adults who were outside and witnessed the incident.  She learned from someone that Nadiya was bouncing up and down in the Kidwalk.  Well of course she was.  That is what Nadiya does and she had to have created momentum to flip the equipment.  Sometimes the entire picture is not painted by one individual.  Instead many come together to create one scene.  Talking to several people will ensure you get all of the details.  Even then some may leave details out to protect their jobs.  This can happen anywhere. Most principals want to know what happened and they want to prevent the accident from occurring again.  Nadiya's principal was sympathetic to my concerns and eager to put preventative measures in place to avoid another situation like this with any student.
         You have the right to discuss with the school your concerns over who is taking care of your child if incidents occur that damage your trust and show a lack of good judgment. Nadiya's accident was a result of faulty communication and poor judgment. Every situation is different.  It is important to isolate the cause and find solutions that prevent the accident from happening again.  It could be a change in assignment of adults caring for your child.  Maybe it is just one person's reassignment.  It may not be necessary to remove your child from the team and place them in a different classroom.  Sometimes that is necessary.  Maybe it is a change in the way staff communicates about equipment and its appropriate uses.  Maybe it is special training that is put in place. 

Nadiya's Kidwalk provides
independence.  Here Nadiya
dances at a school dance.

         I appreciated that the school was concerned.  Staff members were concerned and they checked up on Nadiya several times while she was out of school. The principal understood my worry and concern over Nadiya's safety at school.  She was willing to address the incident and make appropriate positive changes to prevent it from happening again.  I needed to feel good about sending my child back to school.
         So what if you don't feel good about sending your child back to school?  What if they take no responsibility in the accident and are not willing to make changes to benefit your child's safety?  I think then it is important to take the incident to the higher ups.  Speak to the appropriate person at the board of education.  Speak to a supervisor of special education, a low incident specialist, or someone from the superintendent's office if necessary.  It should be in everyone's best interest to keep your child safe.  In extreme cases you may need to request that your child be transferred to another school where his or her needs will be met and they will be kept safe.  In the rare case where the school system is unwilling to correct the problem and if they were negligent in the accident you should speak to a lawyer.  Your child has the right to safety at school and you have a reasonable expectation that the school will make intelligent choices about your child's care.  Accidents happen but there should be an effort to prevent an accident from happening again.  I feel Nadiya's school learned from this accident and that they have taken steps to ensure it won't happen again.  That matters.

         I recommend following up several times with your pediatrician for the first month after the accident.  Children can have symptoms for up to 4 weeks.  After that their condition may be considered Post Concussive Syndrome and recovery could take much longer.  Nadiya continues to improve and we are hopeful that she will recover quickly and completely.  Let your child's neurologist know what has happened.  They see a lot of head injuries especially from their patients with Epilepsy.  They can guide you and decide if further testing is needed. Once a child has a concussion each consecutive concussion they acquire will be more intense.  Prevention of additional head injuries is very important.

Nadiya when she first got her Kidwalk

       As with any fall it is important to get back on that horse so to speak.  Nadiya's Kidwalk was cleared of any defect and all the lose bolts were tightened.  She is using it again at school with the appropriate supervision and support components including the seat.  Nadiya's PT will do most of the challenging under her expert eye and Nadiya will continue walking the halls in her Kidwalk.

       Our disabled children require a little more care when they are injured.  We are required to speak for them and aid in the assessment and treatment of injuries.  Hopefully this article will help you do that should your child suffer a head injury in the future.

Caverns, Orchards, and Bowling Pins

Headed Into the Earth On All Four Wheels

     

Anstasiya, David and Nadiya at Luray Caverns

       David and I strongly believe that all children should have the opportunity to experience things in life.  They should see things and go places.  This helps to create background experiences for them to learn from and build upon.  How does a child know what the sea really is if he has not smelled the salt water and felt the ocean waves crash around him?  It is hard to imagine if it has never been experienced.  We know it can be difficult to experience life when you have a child who is limited by a wheelchair and the inaccessibility to the world.  David and I have been very adventurous in our excursions.  If it can be done we have been willing to try it.  This article highlights three adventures we tried with ambition and an open mind.  The result was great success and if we can do it so can you!
         
         I must be honest when David said he was interested in going to Luray Caverns my first thought was that he had lost his mind.  I thought of ravines and cliffs and Nadiya's chair hurling into a bottomless pit.  I couldn't imagine how we would be able to do this.  David said there would be a wheelchair lift and that the pathways were supposed to be accessible for a wheelchair.  Experience has taught me that planning is a must for any successful trip especially if you are taking a disabled child.  I asked David to call Luray Caverns and find out specifics about the accessibility.  I agreed to go if he could get that confirmation.  I would suggest this to anyone who is thinking about going on any kind of trip.  It allows you to plan better and avoid  disappointments and  unnecessary frustration.

When we arrived it was cloudy and raining
 but not a deal breaker

       David took a Friday off just before school started and we headed out to Luray, Virginia.  The closer we got to Virginia the worse the weather got.  I was feeling anxious wondering how this would affect our trip if it were raining hard the entire time.  Though it made driving a little tricky it didn't ruin our trip. 
       Luray Caverns is underground so it doesn't matter if it is raining or not to see the caverns.  There are some outside activities available that rain may prevent you from doing such as the hedge maze and the rope course playground.  Inside they have a small antique car and toy museum as well as gift shops and a café.  The day was definitely not lost to rain.
       Upon arrival we experienced the usual frustration that occurs most places we go and which is there were no available handicap parking spots.  Because of the rain the place was not crowded so I image on a nice day it would be just as bad or worse.  This happens so often that it no longer surprises me.  It does still frustrate and upset me.  There are entirely too many people who have handicap tags and are not disabled.  This leaves people like Nadiya, who have wheelchairs, no safe place to park with side access to get into their wheelchairs.  If they have a lift van it is even more difficult I imagine.  We parked further out and luckily the spots were pretty large and we had room.  No one parked on top of us which is always a risk when you do not have a handicap spot.  When that happens it makes it impossible to get Nadiya back in the car.  Nadiya's chair is not an accessory it is a necessity so it is frustrating when she is not accommodated out in the world because others have taken the accommodations as a convenience to them.

The Chair Matters



Nadiya on the lift

         In sharing my experience with Nadiya out in the world I want to create an honest picture of what the trip entailed.  Let me be clear from the start of this journey that the wheelchair does matter.  Nadiya would not have done well with her old Quicky Zippy chair with or without the power components..  If you have a power wheelchair you would need to call Luray Caverns to ask specifically if the lift can accommodate that type of chair.  I believe they are too large and too heavy for the lift.  A typical manual wheelchair is fine for the lift but may be difficult in the cavern.  Nadiya's Convaid Cruiser was ideal for this trip.  The wheel tread is like that of a mountain bike and it is light and wide so it won't tip over.  She fit easily on the lift along with her backpack and lunch cooler bag hanging from the back.


         






We follow the lift down

Down We Go       
         There were two staircases that descended into the cavern.  One of them was used for traffic going down and the other for the traffic coming up.  The up stairway had the lift.  Once a group had cleared from the stairs an employee brought the lift up to the top for Nadiya.  He walked down the steps in front of the lift as it slowly descended making sure she was safe while David, Anastasiya, and I followed Nadiya behind the lift. It is always exciting for me when I see such a well thought out accommodation.  There is truly a desire to allow as many people as possible to experience this place and not just those who can walk.  We are the only ones who used this lift while we were there.  I think if more people realized that the caverns were accessible they would go.  In fact we did not see any other special families with a disabled child for the entire trip. Many typical people smiled at us and were polite.  I think it is good for others to see us manage Nadiya's disabilities in such an unexpected place.

Anastasiya and I

        The Cave was cool.  The temperature is a constant 55 degrees regardless of the temperature outside.  Because of the constant humidity it feels like 65 degrees.  We all wore light jackets.  The kids and I still had shorts on and were very comfortable.  I strongly recommend wearing tennis shoes with a good tread.  Some of the walkways are wet and therefore very slippery.  Appropriate footwear is important especially if you are the one pushing the wheelchair.  It is not a flat path; the walkway descends slowly and deeply into the cavern and back up to where you started by the end. There are railings to hold onto if you need them for balance and stability.  David did most of the pushing and I took most of the pictures.  The times I did push it was manageable.  The Convaid Cruiser handles well and Nadiya is a light 50 pounds in the chair.  Of course if you are pushing a larger child the task will be physically more demanding.


Anastasiya demonstrates how low
the stalactites hang

        















           We traveled through the caverns as a group with a tour guide.  Each group was spaced significantly so that you could easily hear your tour guide without being distracted by another group.  The guides spoke loudly and clearly welcoming questions from anyone in the group.  They were knowledgeable and pointed out highlights along each stop.  The tour took an hour but the time went by quickly since we were constantly moving.  You must keep up with the group because their lighting system is on a timer and the area will go dark if you linger too long.  We had no trouble keeping up with the group in fact we were usually in the middle.




Nadiya comes up on the lift after the tour

        Neither of our children had ever experienced anything like this.  It was an exciting adventure for both of them.  After the tour Nadiya came back up on the lift with the employee behind her to make sure she was safe and that the lift was operating properly.  He told me the lift has been there for 15 years.  I think if more people knew how accessible the caverns are more people with disabilities would visit.  The  employee who operated the lift was confident and capable and had obviously been trained to do this.  The staff was friendly and helpful and immediately accommodated Nadiya as soon as David asked for assistance for her.  I think it is important to feel welcome and to feel that a place can manage your child's disability with the appropriate accommodations.










Heating Nadiya's food in a
bowl of hot water

        Afterwards we went to their café for lunch.  Every state has it's own health codes to abide by.  Some are not permitted to heat food up in their microwave that does not come from their kitchen.  This was the case at Luray Caverns.  I recommend having a plan B whenever you travel especially with your child's food if they are on a special diet.  We have found that heating Nadiya's food up by submerging her sealed container in a bowl of hot water works fine.  The café staff was happy to give us a bowl of hot water and we had no difficulty heating Nadiya's food this way.  There is a handicap accessible restroom in the café but there isn't a place to change a large child so I had to change my 9 year old in our minivan.  This is typical for most places we go.


       We decided to take the scenic Skyline Drive home.  This is a road that goes through the mountains of Shenandoah State Park.  There are viewing points along the road where you can pull over and take pictures of the amazing views.  During this drive the rain stopped and the sky cleared so that we were able to experience the beautiful scenery and take some great pictures.  Overall it was a great trip that provided an accommodating new experience for our family.  As I was looking through the information the Shenandoah Park Rangers gave us there were some accessible hiking and camping options.  I'm not sure what that would mean for Nadiya exactly but it is an interesting idea and maybe an adventure for another day.  We needed to head home because we had another adventure in store for the next day.



This Is Where Our Food Comes From

        

        The next day we went to Larriland Farms in Woodbine, Maryland.  Surprisingly this was a great experience for Nadiya as well.  This particular farm has several picking fields with different types of produce ready throughout the harvest season.  Check their website for what is available for picking each day.  Here is the link for their site.  http://www.pickyourown.com/



Here on the paved road it is smooth sailing

        We picked two different types of apples, some raspberries, grapes, flowers, and peaches on the day we went.  There were signs to follow that directed us to the appropriate fields for each item.  Once at your chosen field I recommend parking on the edge of the grass closest to the gravel or paved walkway even if you have to start your own row of parking.   Some areas have tall thick grass that is difficult to push a wheelchair through.  If it is wet out this will be even more difficult.  However, when we parked close to the gravel path we were able to manage Nadiya's chair fine.  Her Convaid Cruiser managed the hills and dirt very well.  Nadiya was able to get very close to the trees and vines and see where our food comes from.


Anastasiya shows Nadiya a freshly picked apple

            Each picking field has a stand equipped with a farm worker, cash register, and a container for picking.  If you need to cut the produce from a vine they offer cutting shears in exchange for your car keys or a driver's license.  They accept cash, checks, or credit cards at the fields.  You are given instructions as to where you may pick and how to tell if the items are ripe.  You must drive from field to field because it is way too far to walk with bags and bins of produce.
         The farm also has a main barn where you can purchase other produce that you cannot pick.  There is a small parking lot available to park at the barn with a few handicapped parking places.  Of course as usual we were not able to park in the handicap spots because they were taken.



It is difficult not to eat more berries than you pick!

      
                     This entire experience is great for all children.  Many of the things we picked Nadiya does not eat because she is on a strict Ketogenic diet.  Still it is good for her to see where some of the world's food comes from and how it is grown.  It is another wonderful life experience that creates background and helps a child learn.
         David made apple sauce and a raspberry sauce.  I made peach cakes using my Granny's German recipe that has been passed down through generations.  The cake was so good that we took some to Granny so she could try it.  I was given her approval but part of the success of the recipe was having wonderfully sweet and juicy peaches to cook with.

     Some Sports Are for Everyone       

 

Nadiya using the ball ramp

       The following weekend we went on one more adventure that is worth mentioning.  We were invited to go bowling with our friends Lisa and Everett and their family.  We were celebrating their son's 7th birthday.  Lisa chose Greenway Bowl in Odenton because of its accessibility for Nadiya.  She reserved an end isle so that there would be a ramp and made sure that Nadiya had a ball ramp so she could play.

Nadiya bowling at
Challenge Day 2013

     This is Nadiya's game.  She bowls at school for gym class using a similar adaptation.  In addition bowling is usually Nadiya's sport event for her Special Olympics Challenge Day held each spring at her school.  Nadiya was excited to be included at a real bowling alley. It had been a long time since she had been at a real bowling alley and back then she had to stay put in her wheelchair for most of the game.  This day Nadiya was older, healthier, and had much more stamina.David took her out of her wheelchair and she did not get                                   back in until it was time to leave.

David helps Nadiya down the ramp 

        The ramp allowed Nadiya to walk down to the aisle with assistance when it was her turn.  Having the ball ramp allowed her to push the bowling ball down the ramp which sent it down the aisle knocking down the pins.  All four children used the gutter blockers to give them an advantage.  When Nadiya was finished she then walked up the two steps and sat on the bench until it was her turn again.  This was an ideal set up for her.  Nadiya walks up steps with assistance quite well; it is the coming down that is difficult.  This set up allowed Nadiya to have the stamina to play two entire games.  The second game Nadiya got the highest score of all of us.  Everett came in second.  Nadiya was thrilled that she won but more so I think she loved being included on yet another adventure.  Having great friends who understand your child's disability and want to include everyone is a wonderful thing. 

         It can be frightening to take your disabled child out into the world on adventures that would seem to be for typical families.  The unknown can be intimidating and uncertain but the reward for experiencing them can be great.  If your child's medical condition does not prevent them from going out into public you can do this too.  Plan ahead and accept the challenge.  Your family can have these experiences and they will always remember the adventures.  It also reminds David and I that we are more than case managers and caregivers.  We are parents; we are a family.

Anastasiya bowling



Our Family



Are You Covered?

Anastasiya and Nadiya Nov. 2009
With healthcare costs rising maybe this isn't too far fetched!

      Often when people learn about Nadiya's case they assume her disability entitles her to a multitude of services and support.  They assume her disability warrants it. The truth of the matter is Nadiya qualifies for very little. From the moment this journey started with Nadiya I knew I would never teach again and it was possible that I would never be able to work at all. I knew my time would be devoted to managing her case and her care. In fact, I wondered if there would be any meaningful work or gainful employment possible ever.





My husband is a software engineer so he supports our family while I stay at home with the kids. It can be hard work. When the kids were small I remember thinking that teaching middle school was easier.

          For a typical family this would be enough and financially we would have be in good shape.  Unfortunately we aren't a typical family and Nadiya was unstable during those early years and required frequent hospitalization.  Our insurance at the time covered some of Nadiya's needs but not enough. I remember constant battles with the insurance company and the hospital over coverage and billing errors.  It consumed my days in between caring for Nadiya and meeting her sister's needs as well. We even had to take out a home equity loan to pay Nadiya's medical bills.  Today we have better insurance but it still isn't enough for Nadiya. The company often denies Durable Medical Equipment (DME) and other things like medical diapers. The co-pays are high and we pay a large portion for Nadiya's medications especially her compounded drugs.
           Repeatedly we have tried to get Nadiya assistance.  Nadiya does not qualify for Medical assistance. Since her father has a job where he makes a fair salary she does not qualify based on income regardless of her medical condition and needs.  We are forced to pay out of pocket for many of her needs.  Caring for a profoundly disabled child is expensive.  For the same reasons Nadiya does not get Social Security. Because she does not get Medical Assistance she does not qualify for Rare and Expensive Medical (REM). These government assistance plans are set up so that you get it all or you get nothing.  Nadiya gets nothing.  At the same time, as a middle class family we pay very high taxes in our state and do not get a tax break for managing Nadiya's needs without assistance.

How well was your physician trained? 
Do they specialize in pediatrics? 

        There is something for middle class families called Model Waiver.  This is a Medical Assistance program  but there are only 200 spots available in the state of Maryland.  Nadiya is on a waiting list where she will likely be for several more years.  We hope that this program isn't eliminated by the time Nadiya's wait is complete. At 18 she will qualify for Medical Assistance but that is 9 years away. Nadiya is 9 years old now. In order for a spot to become available someone needs to move out of state, age out after the age of 21, have a miraculous recovery, or pass away.  Spots do not become available frequently.  Where this may look like a solution it only serves 200 kids at a time. 

         Middle class families can apply for Low Intensity Support Funding (LISS) which provides $3,000 a year to disabled children regardless of income.  This is a first come first serve basis and only if funding id available and they approve your application.  We will applied for funding for a year's worth of weekly physical therapy co-pays totaling about $2,000.  Nadiya was denied because the LISS funds were depleted after the first day.  Nadiya's application is stamped July 2nd which was day two of them accepting applications.  It is disheartening that this has happened.  Now LISS, which was the only available support for Nadiya, has become an ineffective source of support for Nadiya.
 

Can you afford the advancements in science?
(Anastasiya conducting a chemistry experiment)

        Meanwhile our government is providing Medical Assistance for many people who shouldn't have it. There are people who abuse drugs and alcohol and will not work so they are covered.  There are many committing fraud and lying to receive services they are not entitled to.  I am not saying there are not families who really need MA and are entitled to it. I am saying that often these services go to the wrong people.
          As the system is set up now families who stay together are not rewarded, in fact they are penalized.  If we placed Nadiya in foster care she would be covered.  If David abandoned us we'd all be covered.  If David or I had a substance abuse problem or a physical or mental illness that we refused to treat we would be covered.  Because we work hard to stay together and manage Nadiya's care we are not covered.  In fact our government expects us to cover entitlements with the tremendous amount of taxes they are taking from David's paycheck and as I said we do not even get a tax break for managing Nadiya's care.  This is a broken system that leaves the disabled children of middle class families behind.

 February 2009- at 5 years old Nadiya
was diagnosed with Lennox Gastaut after
an extensive inpatient EEG.

          What Are Insurance Companies Covering?

         Before you say that middle class families can better afford this I need to put things into perspective for you.   We have insurance and for a typical, healthy family this might be OK.  Here is the breakdown of medical costs for Nadiya.  I am sure it is similar for other middle class families with a disabled child who are in our position. 
         A significant chunk of money comes out of David's salary for our benefits.  That amount just increased as of January 1st and will likely go up again next year.  It costs us $30.00 for Nadiya to see the pediatrician when she is sick.  During the winter that is frequent.  Nadiya sees many specialists.  Usually we average one specialist per month but sometimes more.  This September Nadiya will see 3 specialists.  The co-pay for a specialist is $40.00 per visit. In addition Nadiya has several prescriptions filled each month at the regular pharmacy ranging from $9.00 to $45.00 each and the shipped compounded medications are even more expensive. 


         Nadiya's Nano vitamin and

Medications can get expensive.

Calcium and vitamin D supplements are not covered at all.  We used to have therapies covered at 100%.  Now there is a $40.00 co-pay for each Physical Therapy (PT) session.  That adds up.  As it is this discourages patients from receiving medically necessary rehab after surgery because they cant afford $120 to $200.00 per week for rehab.  For a disabled child they usually require weekly sessions for an indefinite period of time just to maintain their skills and prevent atrophy.  Since we have become aware of Nadiya's bone density problems we know she needs private PT at least once per week.  At $160.00 per month that adds up.  Who can afford to do all of this?  We fear this high co-pay will soon be applied to Nadiya's other therapies which would affect her speech, OT, and feeding clinic therapies as well.  In addition insurance companies often deny DME (Durable Medical Equipment).  For us they only seem to cover wheelchairs and walkers.  The rest we are left to deal with.  Appropriate seating can cost $1,500 to $2,000.  An adaptive potty costs $1,000 and a bath seat can cost anywhere between $500 to $1,000.  If the equipment needs extra supports that can increase the cost of a piece of equipment.  Our insurance does not cover medical diapers but Medicaid does; Medicaid even covers having them delivered to the child's door.  Our portion of Emergency Room cost is a $200.00 copay.  We have had unstable moments where Nadiya went to the Emergency Room several times in a year.  Now we also have a co-pay for imaging.  In the past Nadiya has had 3 MRIs, a CT scan, and too many x-rays to count.   From now on we will be charged for these as well.

November 2010 - Nadiya 6 years old
after bi-lateral hip surgery

       Nadiya had her annual Genetics clinic last month and though there are several tests the Geneticist wants to run on Nadiya the insurance company will not commit to covering the tests.  Each test can run thousands of dollars which is a devastating bill for a family to get stuck with.  We were told this is happening more and more often with all insurance companies.  So the science may be available but the healthcare system is not willing to fund these tests.  

       All of these things quickly add up every month.  Even if Nadiya had Medicaid just as a co-insurance we would be able to manage much better.  Right now there doesn't seem like there will be any relief in sight.  To make matters worse our insurance is a self funded plan with no regulatory agency.  They have final fiduciary over appeals and disputes so there is no recourse.  A self funded plan does not answer to the insurance commissioner.  With the push toward federal healthcare private insurance seems to be getting more and more costly and covering less and less.

                    The Problem Is Bigger Than My Family
      
          If you have aging parents you probably have heard them complain about Medicare and their supplemental insurance as well.  The costs are extreme for many and rising though they are on a fixed income.  Don't misunderstand me though, I am not in favor of a universal healthcare system either.  I think Healthcare reform is a better answer.  Insurance companies have been given way too much power in deciding what your care should be and how your conditions should be treated.  They determine which doctors you can see and how often. 



 

Are all of the members of your surgical team in network?
(Anastasiya and friends operate on a giraffe.)

  Many states have a shortage of pediatric specialties because the training is so expensive.  Every year in June, Children's Hospitals advocate for funding for specialty training during Family Advocacy Week.  Even with many hospitals in Maryland specializing in pediatrics there is a problem with these specialists being in network with our insurance.  The insurance company will say there are plenty of Psychologists or Durable Medical Vendors in network, for example.  The problem is none of them specialize in pediatrics.  That can really complicate things and force a family to pay out of network costs.
           The only people who do not seem to be affect by this are people who are well.  When you see a primary care physician once a year and your children rarely get sick, healthcare is not a huge concern.  I think everyone should be aware that tragedy can strike anytime.  Anyone can have a child with profound disabilities.  I did everything right and had a healthy pregnancy with no family history of problems and yet I had a child who has multiple disabilities.  People are surviving diseases and traumas that science could not treat decades ago.  Healthcare Insurance needs to support these advancements in treatment, care, and diagnostic ability.  From cancer to heart disease to epilepsy, trauma, and beyond.  This issue can affect anyone at any time.

   
What is the Answer for Families with Disabled Children?



Are you able to choose your own doctor
or does your insurance company do that
for you?
 

         To me the answer is simple.  Severely disabled children should qualify for Medicaid based on their level of disability and not on the basis of their middle class status.  Only the very wealthy can manage these costs without assistance.  The very poor have the assistance and their coverage is way better than Nadiya's.  The middle class are left in the middle.  Law makers and government officials are ignoring the cries of these families and at the same time taking more and more from them to support entitlement programs.  There is so much waste and not enough regulation that Medicaid is grossly abused.  The middle class are paying for this.  I refuse to believe that there is not a way to support those who need it without gouging the middle class.  No one seems to care to find the answer.
         I have said this before but I feel I need to say it again. At the end of the day our country is proud of its diversity.  Groups will advocate for their race, religion, sexual orientation, age, or gender but the disabled often have no voice of their own.  Their caregivers are exhausted and so this group is overlooked.  We must address the needs of disabled Children in Maryland regardless of their class or whether they have two parents over one.  Let’s start looking at the severity   of their disability and their intense needs. 




  New discoveries are being made each year to advance
medicine.  Who knows what the next generation of
scientists will discover. (Anastasiya's friend looks
for a cure for the Giraffe's disease.)

          Everyone should be aware of their benefits and how they are changing each year.  You should be aware of how the changes affect you and your family. Changes in the law should be monitored and your voice should be heard.  Educate yourself.  The people who make the laws and the insurance companies are not looking out for you.  They are looking to save money and generate revenue.  We should be celebrating science and advancements in treatment not wondering if our coverage is good enough for us to reap the benefit.
      
            I  will keep talking to the politicians and keep advocating for middle class families with disabled children.  The more voices that sound together the stronger the message will be.  The only way to force change is to get involved.  People ask me if Nadiya is covered all of the time.  I begin my answer with, "That depends..."  Everyone wants to believe that all disabled children have affordable medical care but the reality is that the middle class have been forgotten.  If the middle class is forced into bankruptcy who will take care of everyone else?  In the meantime if you or your child become seriously ill are you covered?    

Anastasiya hopes to be a surgeon or a research scientist some day. 
She is fascinated with the brain and how it works. 
Maybe one day she will discover ways to correct brain disorders
such as epilepsy and dementia.
(Here at about 6 years old Anastasiya administers a vaccine to one of her stuffed animals.)