Friday, April 10, 2015

I WON'T HIDE MY CHILDREN TO MAKE SOCIETY COMFORTABLE!!!

About a month ago my sister-in-law and I planned that over spring break we were going to try and get all of our kids together for an outing to Helium Trampoline Park in New Berlin WI. We decided it would be great to go in honor of Silas birthday. Two of my nieces are teenagers and one has a job so finding time for us all to get together is no easy task and we don't get to get together very often anymore. Not to mention that for me to be able to take all 5 of my kids (4 of which do not walk yet) out to do something takes a little planning and a few extra hands! Here is a letter I wrote to the owner of the trampoline park, it explains the whole situation...



Dear Ray (owner of Helium Trampoline Park in New Berlin)

Thursday April 9, 2015, I came to your trampoline park with my 5 children, my sister and my 3 nieces for an hour of jumping fun for my son’s birthday. We were all very excited to come and spend some time together bouncing (which is a rare moment for schedules to line up so we could all be together), but when we got there we were almost immediately attacked by your staff. It felt as though they were looking for any reason we could NOT jump. We were first told that there couldn’t be more than one person on a square at a time, then when my sister explained that my children couldn’t walk so we were helping them bounce we were told that they were too young and that they didn’t have a singed wavier or wrist bands. To that I would like to say how could we have gotten in without signed waivers, when checking in your staff checks to make sure there is a wavier for everyone that jumps and they check ages; in fact when your staff checked, my nieces wavier was expired and she had to redo hers so again how could we have gotten in without one? When we passed the test of age, wavier and wristbands then we were told that they didn’t have the correct socks but when I have come to your establishment in the past I was told that they didn’t need the socks if they didn’t walk; Myself, my sister, my nieces and my daughter that does walk all had the socks as required. Quickly after that we were told that we had to move because we were not in a safe place. (This all happening within minutes of our getting to the park, in fact not all my children were even on the trampolines before we were approached by your staff) After a female staff argued all these points with my sister the staff member stormed off, can you at this point understand how we felt? We paid the same amount of money as everyone else that was there, we didn’t get any kind of discount or anything so why were we treated so horribly? Was it because my 5 beautiful children have Down Syndrome?

After a few minute we thought we would stay and make the best of a difficult start but then I was approached by a young man asking to see my daughter’s wrist band and telling me that she needed special socks, I explained the situation and he walk away confused. Minutes later you came in and approached my 16 year old niece and told her she had to move to a “safer place”; I understand and will give you the benefit of the doubt that people with special needs may not be in your world so maybe you thought you were doing us a favor (that’s what I really want to believe because the alternative would be that you put us in a corner away from the rest of the public because you and your company are just plan bullies and prejudice).  After you argued with my niece and threatened that she could either follow you or she had to leave with him I came over and approached you to stop this insanity (at this point we were only at the park for 8mins) I asked sir where do you want us to be, then you showed us to a  CORNER. I watched you instruct your staff to stay close and guard us and you walked away. At this point I was upset as well as my sister and niece but I was still determined to have a nice time, thinking the worst was behind us and following all the ridiculous rules that not one other person in the whole park had to follow I began bouncing with my daughter. When I looked up I saw 2 of your staff members doing something I couldn’t believe, something that I really with all my heart hope and pray that you in retrospect regret DEEPLY, your staff was attempting to surround my family that: 1. Paid the same amount of money as everyone else, 2. Was attacked with a boat load of rules as soon as we tried to bounce like everyone else, 3. Was put in a corner away from everyone else and 4. Was made to feel completely horrible, they were going to surround my family with CAUTION TAPE….. BIG YELLOW CAUTION TAPE!!!!!!! As if you didn’t make us feel unwanted and unwelcome enough you were going to surround human beings with CAUTION TAPE!!!!! Do you see how unbelievably inappropriate that was? As if my children were broken or contagious!!! How do you think other people in the community see us if there is CAUTION TAPE around us???? How do you think impressionable children will look at my children who have a disability? There are so many stigmas out there making life difficult enough and as a mother with children with special needs it is my job to break those stigmas and you just encouraged the segregation and the continued fear of people with special needs.

At one point you told my sister you were doing all this to “support us”, it did not feel that way, it felt like we were being bullied. We were not even given a chance to cause a problem, you and your staff assumed we would be a problem and completely mistreated us. You talked about safety but isn’t that why parents sign a waiver in the first place? I, as the parent, accepted responsibility for my children’s safety by signing the wavier and I went a step further  by  providing one-on-one helpers for each of my children that needed extra help that is all that needed to happen. At no point were any of my children left unattended or causing any trouble. Your concern for us being in a high traffic area was also uncalled for, people are pretty smart if someone is in a square they would walk around and if one of my children gets pushed or something, that’s life! I didn’t see anyone else that were sharing squares have staff approach them and I saw a young boy (of questionable age) able to bounce on his feet that was NOT wearing Helium socks and no one ever approached him or his mother. If you have rules they should be consistent for everyone at every time of the day.

As a mother of children with special needs and even more specifically 4 children that do not walk yet it is difficult to find activities that we can do as a family and this was a place that I have come to in the past (one child at a time with no trouble) and we really had a great time but unfortunately I don’t think I can ever come back again. For too long parents of children with special needs have been put in the “corner”, there are parents that don’t even try anymore to take their child in public for fear of being treated the way we were treated today. What I honestly suggest to you as the owner of a company that services the community around them and to avoid any other family feeling so completely discriminated against reach out to some agencies in the community that deal with special needs people (Easter Seals Southeastern WI, Down Syndrome Association of WI, United Cerebral Palsy, UWM, to name a few, many if not all will do it for free) and have a mandatory seminar on understanding differences and come up with a better plan on how to work with and “support” families with children with special needs that might like to come to your park. I would really like to look back on the experience as a teaching moment. I, as a mother am asking that you and your company try to be a part of the solution instead of part of the problem!


I eagerly await to hear how you with deal with this situation.

Concerned parent,

Amanda Karol
Akarol25@yahoo.com




We stayed the entire hour that we paid for for a few notable reasons:

1. My children didn't understand what was happening and they were enjoying the park and it just wouldn't have been fair to leave for them, even though my time was completely spoiled. Even after all this happened I couldn't get into it, I was hurt and mindfully absent. I didn't take not one picture (which if you know me at all I am a picture taking maniac) and I spent the last 45mins trying so hard not to cry!
2. We paid more than $100 for an HOUR of jumping just like everyone else and I was NOT going to lose out on that money!
3. Running out and letting them off would just further the problem of unacceptance. It is important to me that my children, who spent the beginning of their lives locked away merely existing not yet living, get every opportunity and life experience they can. I want them to be able to decided they can't or don't want to do something NOT be told they can't do it. There are so many parents of children/people with special needs out there that just rather stay at home than be treated the way my family was treated and part of me can't blame them. But what about the future? What about when I am not here to protect them and stand up for them? That is the reason I have to fight now so that as my children grow up they with be accepted not put in a corner and taped off. I am NOT ashamed to be the mother of 5 people with Down Syndrome and I am not ashamed to have close friends and family with Autism and Cerebral Palsy, to name a few. These diagnoses DO NOT DEFINE these people its is what makes them DIFFERENT NOT LESS!!!!!!!!!!!!!

If you are offended by people with special needs then STAY HOME, I WILL NOT HIDE because you feel uncomfortable and have my children miss out on living I WONT "GIVE UP MY SEAT ON THE BUS"!!!!!!!!

Sunday, November 2, 2014

One Year Update!!!

I can't believe we have been home a whole year!!! We have had so many ups and downs! These new littles have come such a long way and are just thriving!

BRIDGET:
Little B came home at 14lbs in a size 9mths clothing... One year later she weighs in at 34lbs and is in 3T clothing.
She has glasses which is helping with her strabismus. She has AFO braces which helps her now that she has enough muscles in her legs to bear weight. She can now control her swallowing and does independent swallows without prompting. One year ago she rarely sat up on her own and if she did it was for a maximum of 10 minutes at a time, now she rarely needs to lay down for a break. She is pulling to a stand and climbing on to the couch independently! She will take about 8 steps while holding onto hands. She has had a thorough dental cleaning and is almost all caught up on her immunizations. She just recently got tubes in, adenoids out and an ABR test done which showed that her hearing is normal! In August she had her open heart surgery which couldn't have gone better!!! 24hrs after the surgery she was off all medication except Tylenol. We were only in the hospital for 4 days and we are cleared for a whole year!!! In school she is doing so good she has about 8 signs and does a great job mimicking! She completes simple tasks and loves playing with toys. She gets PT, OT and speech and she amazes me every day!!!



October 30th 2013

 
 
November 2nd 2014

 
 
October 30th 2013


 
 
November 2nd 2014

 




JASPER:
J came home at 13lbs and in 6-9mths clothing... One year later he weighs in at 28lbs and is just about in 24mths clothing.
J has glasses to help strengthen his optic nerve and AFO braces to help straighten his legs. When he first came home he wouldn't even put his feet on the ground and now he will not only take my hands and walk like crazy but he will seek me out. He responds to his name and will give eye contact for brief periods of time (about 3 to 5secs) His body is straighter and stronger today! He has had a thorough dental cleaning and is also just about caught up on immunizations. He has tubes in and had an ABR test done which shows he has normal hearing in both ears. He was gaining weight slowly so we went to a GI specialist after a few test they DR said he is just a small little guy and that the steady small amounts of weight he is gaining is good! His personality has changed completely, he knows who certain people are will seek out people he knows. He is just starting to play with toys other than rattles and he plays appropriately. The other day he even had to do some problem solving to get they toy unstuck I was so very proud of this little guy! He is doing great at school, it took a little bit for him to trust the people that work with him but now he loves to learn! He gets PT, Ot and speech and he shines brighter every day!!!


                                                              October 30th 2013
 
 
 
November 2nd 2014
 
 
 
October 30th 2013

 
 
November 2nd 2014







SILAS:
Si came home at 16lbs and in 12mths cloths... One year later he weighs in at 31lbs and is in 2T cloths.
Silas had the hardest time transitioning. He had a lot of behavior problems the first few mths while he was adjusting but now unless he is coming down with a cold we almost never see behavior melt downs. Silas and I have built a very strong relationship; he is so a mamma's boy!!! He is very smart, he knows his name and he knows who different people are! He is so very loved and now he lets us love him!!! We have yet to see an eye doctor, but he has had a good cleaning and he lost 2 teeth. He can stand up independently and walk with out any help. He is still a little unsteady but he is working hard! He can complete simple tasks and will come if he is called! He has 2 signs and we are working on  few others at home and in school. He had tubes in,  adenoids out and an ABR test done which showed his hearing was normal! He gets PT, OT and speech and for a kid I never thought was going to like me let alone love me I think he knows who is Mama is and I think he loves me very much!!!
 
 
October 30th 2013



                                                                   November 2nd 2014
                                          (Silas grew in length more than chub, he is very tall!)



 

 

 
 

Wednesday, January 1, 2014

Merry Christmas and Happy New Year!!!

If you think our hands are FULL you should see our HEARTS!!!
Merry Christmas and Happy New Year!!!
 
 
 
 



Family tradition: Before we open gifts we read from the Bible the story of the GREATS GIFT given to the world! 

 
 
 Mr. Destruct-O


 
 
 Every Christmas this guy falls asleep, he's just not interested I guess!!!
 
 
 Cutest Elf EVER!!!!


 
This year she has been such a little helper in the kitchen!!!

 
 
 Jasper get's the award for being the hardest of my children to photograph!!!
 
Next year I am getting her boxes with tissue paper in them and that is ALL!!!




 
 
 Didn't want the gift just LOVED ripping that sucker open!!!!!



Cole wanted to play the drums on his gift and when Fred opened it he was very upset!






 
 
 This is HUGE for this guy cuz he has like 2 rattles he will touch and for him to just grab on to a new toy with our really being introduced to it, it's amazing!!!!!

 
 
 
 Could this boy be any cuter????


 
 
 Again tearing things apart!!!!! Go get em Silas!!!



 
 
 My GOSH he is so stinkin cute I just can't handle it!!!!!! Best pic of him!!!


 
 

 Yeah I bought my son a pony... LOL! He LOVES LOVES LOVES it!!!!