Letter To Parents Who Find Themselves In The Same Boat As Us


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Letter To Parents Who Find Themselves in the same boat as us.  

We have our hard days too.  I just wanted to be honest with anyone that is reading my blog that it’s not all sunshine and roses when you are dealing with Autism.  As Johnny gets older I am more aware of what I share on my blog because he will read it one day and I am not sure how he will feel reading about those moments.   What helps me get through those challenging times is remembering if I think it’s hard for me how does it feel for him? Yes it can be frustrating when it seems so difficult and wondering why my son has to struggle and work so hard.  I would never wish that he would have to work harder than any other child in the classroom.  That tasks would have to be broken down into smaller bits and smaller goals so that he can learn them.  I wouldn’t have wanted my child to have to go to hours of speech and occupational therapy while other children his age are playing. Yes  I have those days when I throw up my hands and think how are we ever going to do this how and wonder out loud why we are taking a step backwards when we need to move forward.  When your child  has a diagnosis of Autism you are helping a child learn how to navigate living in a world where things are wired to go one way when he or she’s going the other way and experiencing the world very differently.

I think the key is to find a way to finally accept the differences and realize that different doesn’t mean less.  It might not feel like that now especially when all the professionals you talk to about your child are quick to tell you EVERYTHING he or she cannot do.

Did I grieve? I don’t like saying it like that but yes I did.  It makes me feel uncomfortable because it’s not that I was wishing my son to be different but because I just wanted to enjoy all the toddler kiddie moments without so many moments of struggle.  I just wanted him to to feel free to let loose as a little kid does and not be overwhelmed by all the sensory input or frustrated by his lack of communication skills.   I felt sad because I thought he was missing out on so many things that other kids loved.   So when I say accept the difference doesn’t mean I’m giving up on his potential because any therapy  I choose to do is not to fix him to make him normal.   Instead,  I do it so that Johnny can learn how to use his strengths and learn the way he likes to learn as well as help him handle things that he finds hard.  I want him to have friends!  I want him to have the life he wants.  So I end up taking him back and forth to speech therapy, occupational therapy and social groups so that he can translate the world and everyone around him.   After awhile I started to realize that Johnny is experiencing things at HIS pace and not at every other child’s pace and that’s okay.  Parent often compare their children’s progress at achieving milestones as they hover around their children at the playground and I think its important to remember that all children meet their milestones at their own pace and its not a competition. This becomes even more important as you raise a child with special needs.  You learn to celebrate, cherish and cheer every little success because you know much went into that moment of progress.

I do understand parents that are afraid of the diagnosis of Autism. There’s a lot to learn and no one wants to know that their child is going to struggle and then realizing that as parents with the massive learning curve ahead of us . But I think that the most important thing to do is come to terms with what ever challenges your child might have and target those challenges and get early intervention as soon as possible. Don’t beat yourself up about whether your child is not standing on one leg yet or jumping up-and-down are pedaling a bike or eating properly sleeping properly or even saying any words. You are putting yourself in it in an extremely frustrating position. Put yourself in a child’s shoes and realize how frustrating it might be for him or her not to be able to do all those things. Then take a page out of ABA therapy where you do backward and forward chaining and breaking down tasks into smaller steps. By breaking task down into smaller steps and celebrating each little step you build confidence in the child and your child and you also make yourself feel better because you see your child moving forward.

I have gotten into the habit of reminding myself that it must be hard to for Johnny to go through his day knowing he is is doing things differently and there are all these adults helping him and teaching him what is coming naturally or faster for the other kids who don’t need the extra help.  Its got to erode his self confidence as he tries to learn so many things.  I am finding that I am more aware of keeping things positive and working on building up his self confidence so that he can tackle the challenges that each day brings. But this begins with me and how I handle myself and how I project that to him.  That’s why I think it’s better to live on the side of hope and positiveness because it’s so easy to sink into frustration.

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5 Comments Add yours

  1. Thanks for this honest and amazing letter. Ours was initially diagnosed as on the spectrum but it was changed to severe ADHD&PTSD. We have been and are going thru the same therapy routes. You’re so right. Giving ourselves permission to let them go at their pace is so important.

    Liked by 1 person

    1. Cyn says:

      Thank you for taking a moment to leave a comment and share. That means a lot. I was talking to another Mom who is raising 2 neurotypical children and she got into venting to me about why kids are not just allowed to be kids anymore and that all kids do things when they are ready. She couldn’t believe the pressure on little ones now a days but in my head I couldn’t imagine how my son must feel when he over hears other adults talking about their kids.

      Liked by 1 person

      1. Seriously, it’s pretty unbelievable. We get, “Your kids go to counseling and OT and Speech? They seem so ‘normal;’ why not just leave it alone?” I have bitten my tongue so many times, but here’s what I’d like to say: “First, ‘normal’ is a setting on your washing machine. It is not a label for children. Second, just because you can’t see it, doesn’t mean it’s not a problem. Let me know when you get a doctorate, and then you can discuss your opinion of my children’s best interests with the counselors and other professionals who are desperately trying to provide early intervention before it’s too late.” I don’t let people talk about my kids (or their kids) in front of them. Polite, “Can we chat later? Little ears…” usually shuts them down, but I’ve had to say, “Hey, we need to talk another time. We don’t talk about kids in front of kids.” People don’t consider how one phrase can shape a child’s whole perception of himself.

        Liked by 1 person

      2. Cyn says:

        Very good point regarding adults talking in front of children. It happened a lot when my little guy was nonverbal and for some strange reason teachers and kids thought he didn’t understand anything then because he couldn’t talk. We had an uphill climb trying to change mindsets but it makes me think about how much damage was done to my son’s self esteem. Another Mom I know told me that with her son if he gets treated like he’s dumb or “like a baby” then he doesn’t give them the time a day because he says they are not treating him with respect.

        OMG the whole “he looks normal” or “he isn’t in a special needs class..right???” or “he’s just shy”

        I love the NORMAL is a cycle on washing machine because its so true! I want to raise children who are well adjusted and happy able to have the life they want not to be little carbon copies and that’s besides having disability.

        Thank you for the lively comments and looking forward to reading more of your blog too:)

        Liked by 1 person

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