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My Child has Special Needs – Do We Need to Broadcast it to the World?
February 22nd, 2012 | 
Author: I haven’t talked much about my daughter and her special needs on my blog, I am not sure why. I am not ashamed or trying to hide her condition. I embrace it, but do I have to convince others to embrace it as well? I am not concerned what others think of her, but I know that I can’t protect her from the world. At times, she tries to socialize which can expose us to the views of others. Sometimes the experiences are great, even uplifting, but others can be tough.
What is the best ways to handle those tough situations
without getting upset or exposing my daughter to the negative?
My daughter was diagnosed at two months with a genetic disorder called Tuberous Sclerosis. I won’t bore you with all of the details, the thing to know is that she has the symptoms of a child with autism, epilepsy, developmental delays, speech delays, and tumor growth. Upon first meeting her, many wouldn’t suspect anything. Over time her actions start reveal some behaviors different than other children her age. I am a first time parent and a first time special needs parent. Needless to say, I have a lot of learning ahead of me. Trying to find the right situations for my daughter to learn socialization is tough. It takes a lot of experimentation and no one has the right answer (only my daughter). She is overwhelmed by groups of children and prefers one on one, which has been enough until now. She is starting to show signs of wanting to interact with groups of children, conditionally of course. I am so excited to see the progress and am starting the process of experimentation. Thankfully, I love trying new things and am open minded about her possibilities.
No parent wants their child to be different.
Not every situation is going to be perfect. Venturing out of our comfort zone is scary and difficult. Every part of my being wants to shelter her from the world, but I know that it wouldn’t be good for her. She wants to be with the children and I want her to have it too. Recently we tried a dance class for two year olds, thinking the younger age would be a good fit. Unfortunately, the children in the class were too advanced. Although, she had a great time and I was excited to have found something she loved. I can’t describe the joy I saw in her face as she danced around with the other little girls! I almost cried!
Tough decision time!
After class, I had to make the tough call about whether to continue with this class or not. There was only one teacher to ten children, she had high expectations and these children knew their role. They all took direction without any assistance, unfortunately my little angel doesn’t understand direction yet. I came to this realization when the teacher told the children to so sit on their assigned numbers on the floor. This basic request might as well been in another language, my little angel didn’t understand. I helped her through her first class, knowing that the teacher preferred that I not be in the room. I explained the reasoning and that I would be helping my daughter transition to the different exercises. She allowed it for this one class, but going forward we would have to discuss it. WRONG! Sadly, not a good fit for us.
I discussed this concern with some friends and they thought the teacher had to make the best decision for her business. These children were obviously being groomed for a dancing career, this was not my goal. I am not saying it was out of the question, but we need to determine if this is something she would like to do first. In trying to understand the situation from a different perspective, I empathize with the teacher’s position of making adjustments for just one student when she had ten others. She was concerned that other parents would want to be in the room with their children, if she let me in. Although my thought was,
“Aren’t accommodations made for other children with special needs?
Where does this stop? How much is too much to expect from a business?”
One suggestion was that I should tell all of the other parents that my child has special needs, so that they would be more accepting. What do you think? I don’t think I should have to run around exclaiming that my daughter is special needs for the world to accept her.
Does she have to wear a sign around her neck? What the heck HELL!!!
I am new to these experiences and looking for other mothers for advice. What would you do?
By Shannon Henrici a mother trying to find her way in the world of parenting.
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Found you through twitter. I understand the situation you’re in. I have a boy with ASD and a girl with aspergers. With my daughter, she started doing dancing classes but struggled to cope and eventually stopped going. She is much happier doing 1-1. At the time though we didn’t know she had a form of autism. If we had known then I would have told her teacher in the hope that they could have done more to help her. We’re now in the situation that my daughter won’t go to any group and has become withdrawn. Whilst she is happy I can’t help but wonder that a late diagnosis and insensitive teaching has made things harder for her. I personally think these classes should try and include our special needs children but I’m not sure we should go round explaining our children’s needs to other parents. In our part of the world some children can have support workers/assistants to help them experience things like scouts and guides; would that be possible for the dancing class?
Thank you so much! I am so thankful to have you share your experiences. It is so hard being a parent, then being a special needs parent adds its own complications. I feel like I am never doing enough or doing it right. I feel lucky that I have known about her situation since birth, which has kept us careful and aware. But I am also sad to only know my daughter as having special needs. No matter how hard you try not to, you act differently. I appreciate your advice on guides, I am trying to be her guide through this world right now. She won’t allow ANYONE else to help her. We have a wonderful caretaker for her and they have a tight bond. She had been great at helping guide her and has a lot of patience for her. I am blessed to have help, I tell her all of the time. I would be lost without our caretaker. I agree with you 100% that people should be more open minded to making the necessary adjustments for children needing a little extra help, sometimes that doesn’t even mean they have special needs. I think we are pushing our children too hard and to fast to be grown up. We have a psychologist working with us and she has reminded us many times that Lily is still only three, let her enjoy being a child for now. There is going to be a lot of pressure on her to keep up when she gets older. I am again blessed to have her on our side. By having an early diagnosis, we have been given the gift of learning patience and acceptance. It isn’t easy though. I hope I can share more of her stories and her more of yours during this journey! Hugs to you and your children! We get it! Even when no one else seems to understand, know that we do!
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