Discrimination and Heart Break

Dear Readers, We are writing to let everyone know about our frustration and disappointment with our recent experience in trying to adopt a dog from Pet Rescue Alliance Rescue Shelter (www.petrescuealliance.org (703) 338-3015) and how they discriminated against us. Shawn is in the Army and Elisabeth is a stay at home mom. We have three children. Sonora is turning 10, Carson is 7 and Evret is turning 4. Sonora was born with spina bifida and since then has been diagnosed with epilepsy and Asperger’s Syndrome, which, simply put, is a mild form of autism. All three of our children grew up with Leelee, our beagle, who passed away last spring from cancer, and Gus our Springer who passed soon after. For those of you who are not familiar with rescue organizations, in our recent experience, they all run basically the same. Find a dog you like, fill out the application, phone interview, home visit and if chosen, you get to adopt the dog. So, for weeks we searched the thousands of dogs available for adoption. I had chosen this approach (vs. going to a breeder or a pet store) to finding a companion for the family to teach my children that there are many unwanted dogs that need a good home. We were interested in a few dogs we were able to meet at Pet Valu, a local pet store that works in conjunction with Pet Rescue Alliance, located in the Springfield Plaza. We met Tex and fell in love with him. We filled out an application and had a home visit the next day. Uma, the representative for PRA, came to the house for about 10 minutes, asked some questions and said she would contact us that night. Nothing about the home visit made us feel that something was not acceptable. After not hearing anything for three days, I finally sent a message requesting information. Uma informed me she had been busy and that she had reservations about my children. I informed her they knew how to treat animals, i.e. do not pull tails or jump on dogs. Her next comment is where it started to go wrong. Uma was mainly concerned about my daughter. She felt Sonora was unhappy that she, Uma, came into our home. I explained to her that Sonora has several disabilities; one being Asperger’s. I explained that when she wants something, in this instance, her tablet, she continues to ask until she gets it. She was not aggressive, nor was she mean to Uma. All she did was continually ask me for her tablet and sound frustrated. Uma seemed to understand my explanation and said we could go ahead with the adoption. The children were so excited. Friday, adoption day, the kids went to school, and I shopped spending over $350 on dog supplies making sure we had all the necessary items to include the exact food Tex was already eating. When we picked up the kids they asked if we had Tex yet and told them we get to pick him up right now! On the way there Carson said, “This is the most exciting day of my life. I am just so excited!” I informed the kids they needed to be calm and so I hear from the back of the car after we parked from Carson, “be calm be calm”. We got to the store early so the kids started picking out toys and when Tex came in to the store they flocked to him and began to pet him. He was a very happy puppy who licked the kids and made them giggle. Sonora was actually the one who never left his side with me. She was in love. We were walking around the store and Sonora asked to hold his leash. I informed Uma, knowing she already had reservations about Sonora, that I would never let her hold the leash on her own; that she just wanted to help, and like children with Asperger’s do, Sonora continually asked to hold part of the leash. At no point were Sonora or the boys mean or inappropriate with Tex. Likewise, Tex was an angel with the kids. Uma then asked to talk to me down an aisle. I assumed we were going to go over the paper work. My husband, Sonora and Carson started to pick out a harness for Tex with assistance from the store clerks. Evret and I went with Uma who told me she was not feeling comfortable with us and that the adoption paper work stated “children could not hold the leash”. I informed her again that I would never let Sonora hold the leash on her own. Uma decided after 5 minutes in a cramped pet store that because my child with Asperger’s asked to hold the leash that we were not fit to adopt Tex. I told her that she just broke my children’s heart, started bawling, turned and then grabbed my family and walked out. I had to tell my three children who had been more excited then when Santa comes that Uma wouldn’t let us have Tex. We all cried to the car, Carson kept saying, “we were so close.” Sonora was so upset and kept saying, “we can’t leave Tex”. She didn’t understand why we were leaving Tex. Carson even offered to give up his gift from Santa saying he would ask for a puppy for the family instead. Sonora later told my friend, "Its wrong to leave a dog alone. We left him alone and he's lonely". There was no way to explain to my children with out causing more hurt feelings about what had just happened. We are sick to our stomachs over the discrimination against our child. Uma’s only concerns were about Sonora. She was uncomfortable with our special needs child. If Uma had reservations we could have had a play date at the park with Tex to see how they all interacted. You DO NOT tell three children they get to have a dog and then decide at the last minute that they cannot have him because Sonora asked to hold the leash! If she did not understand children with special needs, she should have asked. We would have let her spend time with her, our child with Asperger’s who hugs everyone and who slept on the floor in front of Lee Lee’s crate the first night after we adopted her. My children’s hearts were broken and a puppy didn’t get a loving home with a family who wanted him. We are sharing our family’s story with you in the hopes that volunteers and employees of other rescue shelters will take the time to educate themselves and their organizations about children with special needs. Additionally, we ask that donors to rescue shelters inquire about shelter policies and training regarding children and adults with special needs; and refrain from donating to organizations – like the Pet Rescue Alliance Rescue SheIter – that blatantly discriminate against families with special needs children. Finally, we would recommend that parents of special needs children inquire upfront about an organization’s understanding of special needs children prior to proceeding with the adoption process. In the end, maybe we weren’t the right family for Tex; but we do know for certain that Pet Rescue Alliance Rescue Shelter is not the pet adoption agency for families with special needs children. Sincerely, Elisabeth and Shawn Kadlec

A Weekend Away

Here we are, Monday again. Why is it always so hard Monday morning after being gone for the weekend. I am pretty sure I do not do anything different to prepare for Monday when I am home. It was a typical Monday morning here, running out the door to get to school to find that the van doors are frozen shut and obviously I didn't start the van to warm it up. Not to mention missing hats and a little boy with a sore throat. I learned my lessen to not plant the idea of staying home again. I think he could have made it today but he was not giving in to the fact that I told him if he was still sick he could stay home.

The positives of the weekend:fun birthday party for Sonora and Evret at Space Aliens, the kids were able to play with their cousins, and I got to go out to dinner WITH OUT kids. All in all not a bad weekend away.

Every day I am just so pleased at things my children say or do. Evret was saying a couple new words, "Blaze and Got Ya". Sonora wanted a flashlight from the counter (I bought two) and I told her "no, it is mommy's". She replied back in a somewhat sassy tone, "but there is two of them." Now I know for most 8 yr old children that sentence would have been normal, but for Sonora that is a huge step in analytical thinking and verbal expression. It is so exciting to know that the wheels are turning and that she isn't just flitting through the days like she had been with all her seizures.

Can't wait to find out how school went for Sonora today after 4 days off, normally it is horrible because she doesn't want to go back. I am on a mission today to start figuring out how we can stay in MN longer when Shawn redeploys. Wish me luck!

Back tracking

So after a good night sleep I figured I better backtrack and fill everyone in on a little more about my family. Seems a little silly to say we are doing great when either you don't understand what has happened or you know our struggles the last couple of years and that was just not enough information. So let the backtracking begin.

Two years ago we yet again moved. This time to Kansas for a school for Shawn. He is now a Major in the Army. The school was only a year. Sonora up to that point had been doing ok in school and was again starting to have seizures. From the time we started changing meds everything went downhill for her, seizures were all day and night, she couldn't focus on school and nothing seemed to be helping. During this time, Evret was born and we muddled along. Come July (one year later) we moved to North Caronlina (Fort Bragg).

Another move meant changing doctors yet again for Sonora, which was really for the better. During this move Sonora was upset, tired, and really just wasn't doing well. We started seeing Dr's at UNC Chapel Hill and for First Grade, put her in a self contained class room so she wouldn't have so many distractions. I should say that during all this the boys were doing just fine:) Well, long story short, 2 shunt revisions, several medicine changes, and almost a year later, (about May) we FINALLY got her seizure under control. So for about 2 years Sonora had constant seizures all day and night. I am not even sure if she learned anything in that time or if its all a nightmare to her.

So, anyway, we had a decision to make last spring too. Shawn was deploying late summer, early fall and we could stay at Fort Bragg or move to MN with my parents. My Mom was diagnosed with lung cancer in April and all our friends were moving from our neighborhood so we were leaning toward MN. But, change is not always good for Sonora and it meant leaving our good Dr's. Well the piece of crap school the kids were going to helped clinch the decision to move when they started switching everything around and were going to have my kids at two different elementary schools and refused to let her redo 1st grade, even though I am pretty sure she barely remembered most, and refused to main stream her. So we moved and since then, it has all been good.

Our little town has stepped up and has down EVERYTHING they can for Sonora. She is repeating first grade, they have mainstreamed her 100% with a full time para, and they keep me informed of everything she does. The best part, Sonora is READING!! I can not tell you how much that means to me. Carson is in K and LOVES it. I work at ECFE at the school as the Parent Educator two mornings a week and Evret gets to come with me. School is wonderful!! Oh and I need to give a special thanks to my cousin Nico, whom advocated for Sonora last year before we even moved. We could not have done all this with out you:)

We bring Sonora to Gillette Children's and for the first time I can say we love EVERY Dr we have seen. Their team approach is amazing. And as for my parents? Well my Mom is going through round two of treatment. I have taken over all cleaning and cooking duties. My parents both help teaching the kids to read and play with them, but best of all is the relationship between Sonora and my Mom. They are cuddle buddies and come 7 at night Sonora is excited to cuddle with her Grandma. They both needed each other I think.

And that brings us to today, Wednesday of MEA week here in MN. The kids are off for a couple of days and Sonora turns 8 on Friday. To all my family, friends and followers I wish you good night and a prayer to all those who have craziness in their lives. There is always a light at the end of the tunnel. I followed my light back to family and if god, and the Army, is willing, this is where we will stay for a couple more years.

A new week

FFFs,

Well, it is a new week. The first full week of the increase in medicine for Sonora, and well, it isn't working well. In fact, I think her seizures are increasing. There are so many things that are better with her. She seems to be talking more, but it is so upsetting when she constantly has to stop doing what she is doing because she has a seizure. It is just so hard to sit and watch her have seizure after seizure. She comes right out of them but still, it just takes so much out of her after a while. So, I guess we will be emailing the doctor soon and getting a medicine change. So, it is still a long road ahead.

Check and double check

FFFs,
Well, we are making it through another day. Have any of you ever been in a situation which you say, "what is going to happen today?" That is what I feel like everyday. Today, I really made sure I needed a count of how many seizures Sonora was having so we can see if the increase in medicine helps. Well, what I got was the statement that Sonora had more seizures today then she has ever had. Well, check that must be what I am waiting for. Then the nurse calls, double check, and says Sonora threw up her second pill that she had to take and that it must be the vanilla ice cream. No, I said, she eats the ice cream with the pill all the time for us. So, my little stinker is now gaging on purpose b.c she doesn't want to take the pills at school. What is a mom to do?
Here is a question for you. Do any of your children have problems going from school to the weekend and then back to school? I am wondering if I need to treat the weekends like a day of school. By the time Monday comes around Sonora does not want to go back to school because she has been living the good life at home all weekend. Any suggestions would be great.

Let's try this again

Family, Friends and Followers (FFFs)
Another day here and gone. Sonora and I were at the doctors today. She had an EEG and then saw the neurologist. Still having too many seizures, so we had to up one of her meds. After a couple of weeks if she is having less seizures then great, if not it'll be time to try a new medicine. So, that is the news for Sonora.
More fun though is our little walker. Evret was walking SO much today. He took about 20 steps in a row. One of these days he will just stop crawling all together. Where did my baby go? In less then a month he will be a year old.
Carson is doing well in school, he let's us know he did the same thing as last time in school. He is too funny. Love them all.

Starting anew

Dear Friends, Family, and Followers,
It has been quite a while since I blogged last. I am starting to blog again for the ease of letting people know what is going on with our lives, especially Sonora. So much has happened since the last time I wrote that I am going to give a "quick" recap. We moved from Kansas to North Carolina in June. Well, technically we went to Minnesota for a month first and then came to NC in July. We had a great time seeing family and fishing however, as the trend goes, by the end of our vacation Sonora was not feeling very good and was having some pretty bad days. We arrived at Fort Bragg and about one week later found the local ER and UNC hospital quite quickly as Sonora's shunt decided to stop working again. Sonora had surgery on her shunt and while in the hospital I started pushing for them to start helping us with her seizures. Ten days later we ended back at UNC in the hospital where Sonora had a video EEG machine hooked up to record her seizure activity for almost a week. The results were not good. Sonora was having a multitude of seizures both day and night. There were even times that she was having seizure activity but nothing about her seemed to change, ie no eye rolling or staring etc. So, a new drug regimen was started. By the end of her stay the doctors thoughts were and I quote, "she's a puzzle". As you can imagine Sonora's was still having much more seizures then they wanted to see on the EEG but it was time to get home and let the medicines work. If anyone has been in the hospital for a week you know the feeling of needing to be at home! The hospital is uncomfortable, boring and just plain depressing at times.
For the next couple of weeks the seizures really seemed to be disappearing. Sonora was not having many staring spells and just seemed more alert then she had been in a long time. Then one day she started getting a rash. Sonora was on a medicine that if a rash began, the medicine would have to STOP. Of course, that is what happened, so good bye to lamictal and hello to zonisamide. Now ever since changing, I have noticed more seizures again. Also, school started.
School, what can I say about thee. This year we put Sonora in a self contained classroom (there's about 8 kids with different special needs to 1 teacher and 3 aids) instead of a normal 1st grade class. Last year she just seemed to be overwhelmed by the amount of children and the pace. However, Sonora is going to "specials" with one of the 1st grade classes this year. I would love to be able to say so far so good, but that is just not the case. It seems Sonora is a little defiant and refusing to do some of her work. Per the teacher she gets up around 1 o'clock everyday to get her backpack to go home because she is done for the day. She still has no real desire for learning and I am just not sure if she really understands WHY she needs to. She would love to just stay at home and be the queen in her dress and crown and be able to watch her movies, play her games or put together her puzzles all day. Any suggestions would be great. I have reverted back to putting sight words and other information she needs to learn on paper that is pinned to the hallway walls.
Anyway, Sonora's neurology appointment is tomorrow so we will have to wait until then to find out what is next. As for the other 2, well Carson loves preschool. He goes for about 2 1/2 hrs in the mornings every day. He is the social butterfly who would rather be there all day! Evret is walking everywhere. He is a climber and is into EVERYTHING. His two favorites are the dog water and the cupboard with the kids cups and bowls. He is definitely giving us a run for our money.
Please feel free to post any questions, comments or suggestions. Thanks for lending an ear;)

Finally, normalcy

Finally on Thursday, Sonora had no partial seizures. Friday, she was also seizure free. All day on Thursday I kept checking my email waiting to get news about how she was doing for the day from the nurse or the teacher. When nothing came I didn't know what to think. But I could just tell when she came home that she was feeling better. She had color and was talking and just perky. What a relief. Now though I think the plan is to still try and wean her off the one medicine. The only way to wean her is to first bump up the other med. I would be fine keeping her on both after the horrible week we had.

We are so blessed to have such a great teacher and nurse at Sonora's school. I can't even imagine not being with them for next year. The stress of having to hope for a great team again is just overwhelming. All we can do is hope that her new school is just as loving and understanding. So, now I guess it is time to start concentrating on moving again. Oh the stress never ends:)

And it continues

And it continues. Sonora had a great night last night and was fine this morning. She had one partial seizure at school that lasted only 30 seconds but of course that is enough to cause her to be tired. After drama and a nap she was feeling better until she came home. Poor Sonora was sick to her stomach and threw up. So now I have to decide is she sick from all the activity in her head, or that she hasn't eaten much today, or is it from bumping up the medicine so fast, or even is it a little stomach bug? Of course I decide to call the Dr, whom I think is probably thinking I over react, who doesn't think it was the medicine but to go ahead and cut back. So she is still having seizures on what she was on and maybe we need to start over, yet again.... I am so frustrated, and wish we could just go back to where we were.


So, this seems to happen to me often; I get complacent when there are not a lot of appointments on the calendar. As a result, I tend to forget to check to make sure everything is all set. I cancelled tomorrow's appointment for Sonora because she wasn't doing well. I cancelled the dentist the other day to go pick her up from school instead. I just realized that her spina bifida apt is during Spring Break which is great if we were going to be here! UGHH!! Working on getting referrals for her appointments and am just frustrated that I even have to bother. Really, Sonora is always going to need a certain set of Doctors and wouldn't it just be easier if we could make an appointment anytime with any of those specialists with out first getting permission from her PCM?

Oh, just another typical day. Oh and to top matters off my refill that was supposed to be ready on Monday wasn't ready and actually didn't seem to be processed at all. Really, can one thing go right this month???!!!

Tired and stressed

Well, you the know the old saying, spoke to soon? That was definitely what I did the other day. Last night and this morning a total of 3 partial seizures. Then, our daughter has been just confused and tired after each episode. We upped her meds again and with it I am left exhausted. Last night she slept with me and was agitated all night. I just want to it to all be alright. I want her EEG to be clean and have no abnormal waves. All we can do is continue with the meds and pray, pray that it will all be ok. To any of you out there who are dealing with the same problems, I pray for you and your family. There is no way to know that when you first become a parent that you can hurt so much when you watch your child in pain. My heart was ready to burst last night not knowing what was next or how much these seizures are hurting her. It is so hard, even though she is 6 she is delayed on her expressive language so to get any information out of her is so hard. Tomorrow is a new day, and all we can do is wait and see how she is. Good night and god bless to all those who have children with special needs and illnesses,

The weekend

Well, I am happy to report that my daughter did not have any more seizures this weekend. However, changing medicines that work with the brain is a little on the stressful side. Our princess who used to be the sweetest things turns into a screaming emotional child. She is demanding and yells at us, her brother and really has no patience. Now, I understand that some kids are like this anyway, but wow, a whole weekend of yelling gets hard to handle. If anyone has had to deal with the changing on medicine you know what I am talking about. How do you tell your son not to talk to his sister because she is just going to be upset. That is hard for a 4 yr old to understand. Not only that but I don't want him to remember his sister when they are older as a pain or not nice.

We have made it through the weekend and that is what is important. Our daughter is back at school today and apparently doing well since we haven't heard anything. I am not sure if there is a limit in what one can take. If anyone knows good ways to destress that would be great.

On a note about moving, I think we have decided on an area, now we just have to hope to find a good rental house. Ah, the stress continues.

I'm back

I am back. I stopped writing only after a few posts but I find that I need an outlet and am hoping to find it in writing. I am a mom. I am a mom of three wonderful children ages 6,4 and 4 12 months. MY six year old daughter, Sonora, has Spina Bifida and really is a daily challenge lately. Today she had a seizure at school. She is fine, she came out of it on her own, but still a scary situation none the less. The school was great they took precautions and called 911. She didn't need to go to the ER but still another bump in the road. We are or were I should say changing her medications and had been weaning her of a couple. Apparently those medicines were helping more than we thought. So her new medicine was upped and will be upped again in 3 days. There is nothing more scary then getting the call from school saying they have called 911 for your child. I grabbed the baby told my 4 yr old to put on shoes, grabbed him a jacket and out the door we went.

This is just one event in the what is seeming to be a very bad year at school for Sonora. Last year at preschool Sonora loved going to school. She completed all her work and never gave the teachers a hard time. This year, she is like a whole new person not wanting to do any work, and refusing to do everything. Eventually she complies for part of the time. She nows has a full time para educator with her during the day to keep her on task otherwise she would wander around the class room in her own world. What happened? Has anyone else had this happen to their children? She was not being treated correctly for her epilepsy I often wonder if that is what has changed my little girl into my little monster.

My stresses only start with her daily attitude. We are in the Army so we will be moving in July to North Carolina. Now we are having to find a good school for Sonora so that I know that she is well taken care of again and being pushed academically. If anyone is interested in the whole military move, keep reading, I plan on posting almost daily everything I do to move our family.

I hope that this blog shines light on life in the military and maybe helps others like me know that they are not alone.
Until tomorrow, good night.

A super mom

I thought it would be a good idea to let you all know why I called my blog Super mom.  First, I want to say that there are many super moms out there.  In fact, I think most moms qualify in some way as a super mom.  I am a wife of an Army officer.  My husband is currently deployed for the third time and thus I have been left once again to take care of the children on my own.  I do not blame my husband for this, we have chosen to stay a part of the Army and thus this life.  I am also a mom of a child with Spina Bifida and thus increased medical needs.  We have been fortunate, our daughter as the doctors first said is, "the best case of the worse case scenario".  As a result of the increased doctors appointment and rehab appointments I have not been able to work.  I am hoping to start my writing on a small scale, here blogging.  So, to those of you who need advice, a laugh, or just some insight, please enjoy.