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Browsing Tag: special needs
So today was just another ordinary day. My mom wasn’t feeling well and I told her I would pick up some medicine for her and I had to make a stop at Wal-Mart anyway. So off I went with Leah to Wal-Mart. While getting her out of the car and into one of those huge shopping carts with the seat in front of the cart (seriously the thing is the size of a minivan) Anyhoo, I was strapping her into the seat when I hear an older woman and what seemed to be her daughter talking. I hear her say the following “There are so many special needs kids around here!” “In my day we didn’t just parade them around like they were normal” WHAT THE $%^# DID YOU JUST SAY? Is what I wanted to say but I didn’t. I believe I took the higher road, the road less traveled. Anyway I said loudly enough for her to hear me. “C’mon Leah, let’s go parade around Wal-Mart.” Oh and she heard me because if looks could kill. I waved and said “Have a lovely day!”
Seriously though, what is wrong with people? Why on earth would you say something like that? Why would you say something like that loud enough that I can hear you? I am a special needs parent, that doesn’t mean I am deaf. I realize you have an opinion, I realize you want to share that opinion, but guess what NO ONE CARES!!!!!!!!!
I don’t know how you do it? I hear it all the time. What do these words mean? How do I do what? Mother? Parent? Survive? People seem to think I have it all put together, I know exactly what I am doing, I am some sort of martyr or saint. I am just a mom who happens to have a special needs child who is doing my best to do what is right for both of my children. If you were to peek into the window of my life on a daily basis you would see that I often feel a lot that most people would never even know.
I often feel isolated, I don’t have many friends who are moms of typical kids and I also don’t have many friends in the Down syndrome community. I never have an easy time making friends so this is especially hard for me. I want and need friends in my life.
When people ask me if i will get a job or go back to teaching, it makes me feel like an enormous failure. I already feel like I am not doing enough. I often times feel like I am failing my child and when you say things like that to me it makes me think oh I really am failing, I am not doing enough.
I often feel like I am failing my typical child as well. Am I doing enough for him? Is he getting enough of my attention? Is he getting what he needs from me?
As a special needs parent you often feel challenged and exhausted each and everyday by the rude comments, the stares, the opinions that are not asked for. As moms we just want to live our lives, love our kids, do the best for them and not have to worry about being judged day in and day out. We have so many struggles that you couldn’t even dream of knowing about, yet you seem to have all the answers.
So if you know a special needs mom, just be a friend to them, try to imagine for a minute what they go through everyday and what it must be like to walk a mile in their shoes. Be kind, make the extra effort. Know that it is probably very hard for them to call you or text you or visit you. If you put in the extra effort, you wouldn’t believe what an amazing friendship you could be a part of. Just be there. I know it is hard. I know it is hard to always be the one who calls, who texts, who visits, who makes plans. But they need you and if you are a true friend you will be there to help. You will be there to understand, to get them out of the house for a few hours, to just be a friend.
Gavin McInnes, do you know who he is? I have no idea who the hell he is nor do I care. I saw this video of him on Fox News, comparing Al Sharpton to a retard or a person with Down Syndrome. No sir I don’t think anyone really cares who you are or what you do, but as a special needs mom I care that you used a public platform to spew your ignorance. You should be ashamed of yourself.
I am a special needs mom and I am responding to the article in the NY Post.
http://www.nypost.com/p/news/local/manhattan/disney_world_srich_kid_outrage_zTBA0xrvZRkIVc1zItXGDP
Dear Rich Entitled Manhattan Moms,
You want to pretend to be a Special Needs mom for the day so that your little darlings don’t have to stand in line at Disney World. You poor poor thing, it must be so hard to have to stand in line for any longer than 5 minutes, it must be so hard to have to discipline your children for more than five minutes while waiting in line, oh and what about the heat and the sun, we wouldn’t want you or your offspring to break a sweat or heaven forbid get a sunburn, I am so sorry you have such a hard life, it truly must be so hard to be you.
If you want that “Special Pass” at Disney I truly believe you should have one, but first there a few requirements I think you should have to complete before you are awarded the “Golden Ticket” as you seem to think it is.
I want you to walk in my shoes, I want you to see what it is like to give birth to a baby, a baby you have wanted for so long, and have them tell you that she has Down Syndrome and if that isn’t bad enough she needs open heart surgery before she is 3 months old or she will die. I want you to know what it’s like to have to drive your baby to the hospital knowing they will cut open her chest and operate on her heart. Sit by her bedside night after night with no sleep praying to any and every God to help your sweet precious baby. You are probably thinking clearly that is enough to earn the ticket, well nope I am sorry you are not quite there yet. You will also be required to visit numerous specialists with your child, for example you will have to bring your child to the cardiologist once a week for a few months, sometimes twice a week, then you will graduate to every two weeks, then once a month, then every 3 months, then every 6 months then finally you will only have to go once a year, and that’s only the cardiologist, there are endocrinologists, pediatricians, Ophthalmologists, Neurologists, just to name a few.
Wait not so fast there is a lot more, you will have to fight with insurance companies and doctors and anyone else who is not being fair to your child. You will have to be your child’s advocate. You will have to always be there, can you do that, can you cancel your fabulous lunch dates, your yoga classes, your shopping sprees, your spa dates. You will be lucky if you have a haircut once a year, so embrace the pony tail it will be your new friend. There will be no time for what you want or need, it is all about your child. So I am sorry but you just might go grey or look unkempt.
I hope you are okay with being stared at because this happens a lot, people will stare at you and your baby, not because they are thinking wow she looks awesome for 36, no it’s because either they feel sorry for you, for your child or they are thankful that they are not you, maybe who knows why they are staring but they do and they do it a lot. Oh there are also the rude comments, you may need to toughen up for this, hope you are able to let things roll off your back because people can be really mean and hurtful.
Oh we are not done yet, get cozy because there is more. I sure hope you had your Wheaties today because now you have to deal with helping your child do all the things that “normal” children do with ease each and every day. Now you have to have all of her therapist appointments, there is Speech because she is almost 2 and still doesn’t talk, then off you go to the Physical Therapist because she’s 2 and she still isn’t walking. Occupational therapy is going to help her too because she is 2 and still can’t feed herself. In between therapies you will do everything all of those therapists have suggested everyday because you are hoping and praying that by the time she is 3 maybe she will do all of these things. Maybe she will walk, feed herself, and say I love you Mom by the time she is 36 months old.
Getting tired, well there is also cooking, cleaning, driving your other children back and forth from school and activities, helping with homework, grocery shopping, Dr appointments, being a good wife, dinner time, bath time, bed time, laundry, etc. Then you get to go to sleep and get up and do it all over again.
Now pay attention, this is the most important part. You are going to worry ALOT, because your child is prone to getting multiple illnesses, and the thought of your child going through anymore hardships is heart breaking.You will never want to send her to school because kids can be cruel and the thought of anyone making her feel bad about herself numbs you.
Okay so here is the really important part, I really hope you have been paying attention. You are going to know true love, you are going to know how to love unconditionally, she is going to teach you things that you never knew about life, about love, about what is important. As soon as you have that feeling, then you may have your special disney pass. Maybe after spending a day in my shoes or any special needs parent’s shoes, you will look differently about what you are doing. Maybe you will be so thankful and happy maybe you will realize how truly lucky you are to have a healthy child.
Yours Truly,
The Mom of a Special Needs Child
Yesterday was my little girls first big outing and her first Easter. With Spring comes, new life, new awakenings, new moments to treasure. We had our first vist to someone’s house since August, it was a wonderful feeling and a little nerve wracking at the same time. I can’t wait to have many more outings and the chance to make wonderful memories with my little family.
We hope everyone had a wonderful Easter !!!!!
As my daughter continues to thrive and do things I never expected her to do, as she continues to amaze me each and every day it makes me think about my own self and expectations for myself. If she can get through all that she has and then some, surely I can accomplish my own goals that I have set for myself. I have already accomplished a lot in my life but now I seem to come up with too many reasons of why I can’t do this or shouldn’t do that. There is always money which is a legitimate reason of why I cannot accomplish things. I would love to start my own party business, where I would make all the decorations, invites, paper products, etc, but one needs money to start such a business, so my head fills with all of these wonderful ideas of what I would create, what I would sell, how successful I would be but then the negative thoughts flood my mind (the you would have to make a lot of things to take pictures of and the things require supplies, which requires money and so on and so forth,) it is a neverending snowball effect. I want to learn photography, to play the guitar. to do all sorts of things but my thoughts get in my way, paralyzing me from moving forward. To me all of these things are wants, not needs and are therefore frivolous.
I have fears, fears that linger in my heart and my soul, fear of things going wrong, fear of the rug being pulled out from under me as it has so many times before, the fear of the unknown. I hope and pray that these fears subside in me, but after being hurt and having horrible things happen, I fear that it will always be that way, the fear has made a permanent dwelling in my being, it lingers there and feeds off my feelings of dismay. I often wonder what it feels like to be carefree, to not have a worry in the world. I guess my first step is to stop being fearful, but how to do that is the question.
We got our first look today, it was probably the second or third time that I have taken her out since she has been “allowed”. I had to go to the doctor so I took my little princess with me. There in the waiting room with a “normal” baby, probably about 2 weeks old, and screaming her head off, the mother kept glaring at me and then at Leah, giving me the phony, I pity you smile. She gave me the look, you know the look, the “Oh I am so sorry that you didn’t have a normal baby like mine look,” the “oh you poor poor thing look,” the pity look. I have been waiting for the first time this would happen, expecting it to hurt like hell, to make me burst into tears, but ya know what it didn’t do any of that. It really pissed me off actually.
I don’t need your pity, I don’t need you to feel sorry for me or my baby. She is going to do things just like any other baby just in her own time. She has been through more in her short little life, than any “normal” baby will experience in a lifetime. She is brave, she is strong, she is determined, she will do whatever she puts her mind to, so no do not pity me, do not pity my family, do not pity my baby, she will surprise this world, she will prove everyone who tells her she can’t wrong. And to people who give those looks to mothers like me, keep your pity for someone who needs it, because I do not need it, there is nothing in my life to feel sorry about, my life is better because she is a part of it, I wish for everyone to experience that kind of love just once in their lives, and then you will understand, then you will never look at me like that again.
So it is Spring and we are allowed to leave the house, FINALLY. It has been a very long almost 8 months of being stuck in the house. So now that she is free to go out, I am afraid to expose her to the world, afraid of the stares from strangers who are ignorant, afraid of the germs out there, afraid of the unknown. I know that I can’t protect her from everything but I am her mother aren’t at least supposed to try.
So I will take her out and face my fears head on, there will always be germs and there will always be ignorant people, so I guess we will take the good with the bad and live our lives to the fullest.
Happy Spring Everyone!!!!!
Although she doesn’t know it yet today is a very special day for my baby girl and for so many babies, children and adults like her. It is a day to celebrate the 3rd copy of the 21st chromosome, 3-21 is World Down Syndrome Day. It is almost 8 months later since I brought that precious little blessing into the World, she is such a blessing and a joy that the whole world wants to celebrate her and others just like her.
8 months ago I never would imagine that today I would ever be celebrating a day such as this and I am embarressed to say that I never knew it existed. So I feel like it is my life’s chore to make people aware, to make them see just how special and wonderful my daughter is and how special all people are with Down Syndrome. As my baby girl gets bigger we, will do something special on this day each year but for now I will just love her, and give her extra hugs and kisses for truly making my world a better place.
I am a guest blogger for Down Syndrome Day on a blog called Bookaholics, go check it out.
http://bookaholicsbkcl.blogspot.com/2012/03/not-what-i-expected.html
Thank you to Mist @ Bookaholics!!!!
