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Readers Respond: What's On Your Special-Needs Parenting Wish List?

Responses: 38

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From the article: Wish List
If you could tell people what you REALLY want for a birthday or holiday gift, what would it be? Extra sleep? Respite care? Respect? Intimidating accompaniment at IEP meetings? I've shared my ideas for Mother's Day and Christmas lists -- now it's your turn! Share Your List

My Wish List

My wish list is a mile long, but immediate wishes would be for my child to be accepted, valued, and respected. I am sick and tired of the education system being so nonchalant in their hierarchy positions. Come back down to where we are and have some compassion. I want empathy -- not sympathy. Be suggestive and actually respect me for the decisions I make for my child -- I do know her best, and while I may not understand the logistics of your jargon, please keep in mind that I and my child are human beings who deserve your respect. My last wish on this post would be for my child to realize she is so special and unique, loving and caring, and that these attributes clearly define the beautiful characteristics of who she is and will be in the future!!!
—Guest lele

Wish List

If I could have a wish it would be that my twenty two year old be able to attend a day program that will give him a feeling of purpose in life. I have four sons with special needs, but he is the oldest and graduated from the BOCES program four years ago. Since then, he has been home with nothing to because we haven't been able to find a program that will accept him. Maybe he has too many disabilities for staff to handle? He has heart disease and has a pacemaker/defibrillator, has M.R. and is also a Schizophenic, but he is more that right now is SAD. I am SAD for him, every day he watches his brothers go to school and he has no place to go. I take him out as much as I can, but he wants friends too. When I hear him in his room taking and singing to himself, it hurts me so bad. Every day he walks back and forth in the hallway just waiting for someone to come visit so he can have a conversatioin with. I wish my son Gregory could go to a program every day and be happy in his life.
—rastamama10

A Mom's Worry

I wish that my child could be accepted in his school environment for the beautiful, sweet, smart child he is and that he can show mastery of the skills he has learned in his own way. Flexibility instead of ridgedness in how he shows what he knows. I wish these continued worries of my child failing a grade because he cannot show mastery tbe way others do without disabilities would go away. It's hard to explain that this is really a problem of the adults in the school and not of his own doing. That he is doing, achieving, and succeeding whether the education team sees it as that or not. The constant fight to educate educators that mastery of a skill and accomplishment does not always have to exactly look the same, is a worry.
—Guest andrea

Turn over the reins

And let someone else make a decision, tell me what to do, take control and know they were right and doing what I do endlessly trying to do the right thing for my child. One full nights sleep and one day without tantrums would be the icing. Bottomless well of patience at my disposal too, but maybe I'm asking for too much.
—extrachrome

Please just listen - like really listen!

My wish would be to be listened to when I talk about our sons, my worries and my suggestions on what we can do to improve their situation. Not to be listened to as a hysterical mother but as a true fighter who should be listened to. I'm not just overreacting! So please, just really really listen to what I have to say! (http://familyandautism.com)
—Guest Ragga (Family and Autism)

my deep desire

I am between jobs,because I should take care of my autistic son.If I go to work my income is lesser than therapists cost.so I am both occupation& speech therapist of my son.I wish I had enough monry to seperate from my spouse because he always humiliates& belittles me for my joblessness.
—Guest venus

Everyone

In reading this parents I want to say I don't pity you...I admire you, your determination, your smile, faith, love, choices made out of love. I know and I often have wondered Lord, why? I think you parents were chosen because God knew you could do it! You are to be admired and one day God will be giving you your reward! Please also forgive our ignorance in not understanding, and know that you strife not in vain!
—Guest Yolanda Corral

My hope and prayer

My hope and prayer is not to have my child "healed" as many friends and family wish for. My wish is for people to accept our son for who he is, just like they accept me for who I am, shortcomings and flaws included. People have a tendency to pity and even mourn for us even now, 10 years after our son's birth. We have moved on and our son is still our son, the perfect gift he was created to be for our family. www.lessonsfrommatthew.com
—kmtroupe

Hey, no problem

I wish that leaving the peanut butter/nuts home would not be a big deal for other parents. I wish that others would want to help protect a child more than fight for their every last right to eat what they want when they want.
—Guest Ali

Reassurance

I wish that effort would always equal outcome. I wish I knew that all these doctors, therapists, specialists, legal battles with our school system, meetings with teachers, etc. would translate into a high school diploma, a college degree, financial stability, and a generative, independent life for my severely autistic child.
—Guest Imani's Mama

peace and courage.

I wish for courage. I've been avoiding getting an official diagnosis for my 8 year old. I hate labels, and don't want him to have one following him around. My husband and I, the school, his OT, we've been working with him on his impulsivity, sensory processing difficulties, fine motor and social skills for years, with notable success. However, school and life are getting more challenging, and we need more answers than we have. Second, I wish for peace. Peace of mind, peace of heart, peace of body. I'm always watching, always planning for the quick exit, always wondering if I'll get a call... This is second nature, and part of being his mom. However, lately I've been anxious, and second guessing myself. Perhaps it's my nerves about his increased difficulties, or taking him to a specialist, but I have been less of myself, more likely to bark. As a result, my family is walking on egg shells around me. It's a bad cycle, and we're all stuck. So, I wish for peace, and courage.
—BethMom

i wish for my young man (my son)

My son is 21 and has really asked for nothing much in his life. He is not physically able to help himself, but that is OK. He has overcome a lot in his life, but I have noticed a change in the age and what is happening in his body. We keep up with exercise. He has asked not to long ago to go to DISNEY WORLD. On our income he is not able. We believe in paying bills first. So that could take a while. He wonders sometimes why. We tell him it is all good and GOD is good and he will work it out. I am THANKFUL for my SON, but I hate it for him that he cannot do things. The main reason is nothing is AVAILABLE for wheelchair people. That is what I am sad about not only for him. I Wish he could go to Disney World and be able to ride the ride he wanted and do what he wanted for once. We try to think of things to do but it is not available. He is too old for camp and he liked that also. I will keeping PRAYING for something, and I realize this is not as important as health, but for him it is important.
—Guest wood

See What I See...

I just hope that one day my son could be viewed as a "normal" child. That he wouldn't be known as a child with health problems or disabilities. I want people to see what I see. An amazing little boy that loves to be loved, loves to be included, that just by him smiling it can make the worst day into a good day. He has proven all of his doctors wrong over the last 3 years and i hope he always does, you can do anything Leland mommy believes in you!
—Guest Adair

Value

My wish is for the world to believe that my children have value... They can be educated, have friendships, to be included, they can hold jobs with support and training. They have a right to be happy, they have a right to have their needs met, they have the right to be included in society not looked down on, they have a right to a truly meaningful education, supports, and most importantly have a society that believes that they can be of value. I wish that society believed in all our children and I will never hear again that they can't have any of the above because there is little or no money.
—Annystribe

I wish I felt competent

I wish that when I talked about what was going on with my child, people would listen and mention what I'm doing right instead of offering silly advice that I've heard a dozen times before. I wish they would believe that if I'm taking a surgery and the recovery care seriously, then it means that it needs to be taken seriously, not that I'm over-protective. I wish that someone would say "Hey! you're doing a good job." rather than "Oh, this is what you should be doing." I wish I could say that to myself.
—Guest MicheleinMichigan

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What's On Your Special-Needs Parenting Wish List?

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