I am a mom of 5, 1 of which has special needs. She has been diagnosed with a brain injury and that has resulted in a significant developmental delay. However, if you look at her, you would expect that she was just as "typical" (normal, whatever that means) as any other 2 year old. I am learning to navigate this new journey of raising a child who has an "invisible disability".
I am the first one to see the glass half full. I almost always look at the positive and just try to enjoy this little life. It can be really taxing at times, and I frequently feel like I am at the end of my rope. There are a few very close friends who seem to know what to say to make me feel better during those times, or I blog and work it out like that...
There are some things though, that people may say. I know that they mean well, and don't realize how their comments can make me feel. So I just wanted to share some of the things that can really irritate me, so when you are in a situation similar to this and want to be helpful or encouraging, you can be without the irritation - LOL!!
When I have tried to share what the latest doctor reports are, and the new roads that we are heading down, we hear a lot of "Oh, but look at her, the doctors don't know what they are talking about". So, while I understand the desire to make us feel better and to try to turn a situation positive, what I generally hear is "Doctors don't know anything, and I know more - she will be fine". The problem is that doctors have studied, the doctors helped to save her life, without our doctors, I don't know where we would be.
Another comment we get when we talk to others about some of the delays is "My kids were like that too" or "I wouldn't worry about that, my kid didn't do that until they were older". Again, people meaning well, I know. It is just that I know that there is a delay, we have been through numerous testings and observations, we have a real diagnosis and we expect even more diagnoses down the road. My older kids were all so different, one talked in sentences by a year, and another talked in their own language until they were 3...I know that there is a varied line of growth. However, this child has a real brain injury, and what we are seeing is in direct relation to the injury. These are the expectations that we took her home with, we were prepared for this (and worse).
One other one we get is "but she looks normal, I don't really see anything wrong with her". I agree with this comment, there is nothing wrong with my daughter, there is nothing wrong with any of these exceptional kids. Life would be no fun if we were all the same, and normal is totally overrated!! There are differences though, and we do focus on them a lot. Especially when we are exhausted from dealing with behaviours that may seem normal for a 2 year old, but they are just a little more intense since it is not just because she is 2...
You may be wondering what that leaves for you to say!! I know that it is all meant for the better, these things are said to be encouraging and I appreciate that. It is why I have not verbally exploded on anyone for saying things along these lines...however, I usually walk away from these conversations double guessing myself. Being a Christian makes it even harder to hear. Sometimes I have felt like my faith was being questioned, or I have felt like I am wrong for feeling the way I have felt.
It is nice to have people who can just listen to you. I love it when people ask questions because sometimes that helps me work through a new situation. We have also had some people give us great ideas on how to deal with some of our issues - and those are great, they are helpful. Some people who know us, and who have spent some time getting to know us, and my daughter, are amazed to see how busy she really is, and the emotional outbursts that she can have - and they acknowledge that.
Most of all, we love having people around us who accept where we are and don't feel like they are the ones who are responsible for giving us hope. We have hope, we know that where we are is amazing and what has already been overcome is huge!! We definitely live with a miracle and we celebrate that - and remember that when we feel like we are raising an out of control child!! We have been given the awesome responsibility of raising this child!!
And we know that God will continue to give us all we need to continue through these circumstances...
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