Is it Autism

I have spent three years wondering if my daughter’s sensory issues, language impairment, and developmental delays were all part of something bigger, like autism. When those thoughts came to mind, I would push them away, because it didn’t matter since she was already getting all the services she would be getting if she had a formal autism diagnosis. On the M-CHAT, my daughter scored as “high risk” for autism. But even with a high risk score, it didn’t mean things wouldn’t or couldn’t change. She was only 2 and constantly making huge strides in her development. I was sure that in another year, her “high risk” would become “low risk.” When she was tested again a year later, I was stunned when it came back again as “high-risk”. But people who knew her would say things like, “Don’t worry, it’s not autism. She’s waay too social.” Did I look worried?

Prior to being enrolled in an ESE (Exceptional Student Education) program in the public school system, my daughter was assessed shortly after turning 3. In the evaluation, it was noted that she did not appear to have autism, so I went forward on the assumption that that was correct, and that I needed to focus only on her sensory issues. At the same time, her differences were becoming more apparent when among her peers.

After a few months of being enrolled in the program at the local public school, I received a call from the program coordinator who wanted to discuss a recent team meeting about my daughter. She wanted to let me know about the summer program and then we got on the subject of autism and seeking an official diagnosis. The coordinator, who has personal experience as well, suggested that I take her to a local children’s hospital if it was something I felt like I wanted to know. She explained that there were pros and cons to the official diagnosis. She was walking me through it before it even happened. None of this was really news, but it was news that someone other than me thought this and was now saying it out loud.

Two days before I received this phone call, I read an article that listed the symptoms for autism in girls. By the end of the list I realized I was holding my breath, because a large number of items on the list applied to my daughter. I read it over several times and finally did a tally: I could easily apply 38 of 55 symptoms listed on the described non-definitive list. Several days before that, I watched the ten minute introduction of Sesame Street’s new character with autism with my daughter and as I watched her get enraptured by Julia, I realized they had a lot in common. So, the realization that my daughter may have autism was fresh in my thoughts when I got the phone call from the school. It wasn’t news, but in some ways, it felt like it.

As my conversation with the coordinator continued I wasn’t able to keep it cool. She noticed my cracking voice as I stumbled to find the right words and she jumped in and said, “I know what you are feeling right now. You will go through a grieving process and that’s okay.” I was silent. I listened to her speak, as I struggled to find words. Would I grieve? What was I grieving? I have known for a long time now that my daughter is not like her peers. I knew she was different, she had sensory integration issues, language delays, developmental delays – things that she was overcoming in time. There was no loss here to grieve. Was there?

After the phone call, the concept of grief bounced around in my mind for close to a week when I realized that it was the permanence of autism that was clutching my breath. I had been holding on to the idea that one day – if I did everything I could for her – that things wouldn’t always be so hard for her, because society isn’t made for people who think or act differently. In fact laws have to be written just to enforce equality for those with disabilities, because it may not be considered otherwise.

But the truth of it is, autism is a part of what makes her who she is. And I love my daughter for who she is, with all of my heart. At the recommendation of the school’s program coordinator – the first person to say aloud what had been in the back of my mind – I called the autism specialty center and scheduled an appointment for my daughter to be evaluated in later this month.

 

17 Comments »

  1. Gosh I could relate to so much of this. From a young age I have known that my daughter is different, I just couldn’t put my finger on why. Over the last few years we’ve had lots of input from doctors and paediatricians and are waiting on assessment from CAHMS, but I’m still not sure whether it’s autism or something else. I think sometimes a diagnosis gives you a sense of acceptance, it’s not a negative at all. She sounds wonderful. #fabfridaypost

    Liked by 1 person

    • Thank you for the support and understanding. She was diagnosed with autism at the end of July. It’s taken me a bit to be able to write how I feel because I kind of knew but kind of didn’t. It’s just a big thing to process. I think you can relate. I’m working on that post now. Keep us posted on your journey and feel free to message me if you have any questions or just need to unload. I think the hardest part is the realization that things will be harder for our kiddos. Hugs.

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  2. It must be so hard to finally hear what you’ve been thinking all along. I have a daughter with some developmental delays that were not diagnosed until she was 8, and that’s been rough. Good for you for trusting your feelings and seeking out the help you and your daughter need early on in her life. I sincerely hope you and your daughter learn and grow together.
    ~Jess
    #FabFridayPost

    Liked by 1 person

    • Thanks so much. She has already become my greatest teacher in life. We can learn so much from our little ones who struggle.

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  3. My sister-in-law struggled to get the diagnosis she was so sure of and my nephew was 8 before he finally was diagnosed with autism. It’s great that your daughter is already getting so much help and there are people out there keeping an eye and doing everything they can for her. Like you say, it’s a part of who she is and you love her unconditionally, that’s all that really matters x
    #FabFridayPost

    Liked by 1 person

    • It’s so hard when you know and can’t seem to get the services and help you need. I am glad your sis-in-law persisted. It is really tough. Thanks so much for the encouragement and for stopping by for the #FabFridayPost

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  4. Oh Briann… this is tough, but I think the main thing is that you have gotten her help she needed, you have taken that first step forward, and that you shouldn’t be too hard on yourself. It’s great that you have a team of specialist who is happy to go the extra mile for you too. Lots of hugs Brian. xxx

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  5. Reading the list of signs on the post you linked to I see so much of my daughter, I don’t have an answer, some things fit, others don’t, she struggles with anything out of routine, she doesn’t like much affection unless she initiates it, same with eye contact. She is very smart, but socially can be awkward and she lacks sympathy when her siblings are sad. Mostly she is coping well with life, but I just know deep down there is something, if that is Autism or not I don’t know, but I love her for who she is. I know it must have been so hard to get the news, in some ways it is great to know, in other ways like you say it makes it real. #FabFridayPost

    Liked by 1 person

    • The list hit home for me too. I still wasn’t sure though. Now I know and can make sure she gets all she needs to successful. Sounds like you are giving your daughter the space and love she needs to experience life on her terms. Love is really the best thing we can offer them and they will find their way. Hugs.

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  6. The struggles and emotional tugs you have been through are what I am most sad about. I know she is one wonderful kid with a beautiful, loving, open momma who already loves her for being her… no matter what it is called. She is lucky to have you, and vice versa. You see you get the opportunity to make us all better people, by sharing your stories and struggles. Big hugs to you Briann ❤ ❤ ❤ #FabfridayPost

    Liked by 1 person

    • Thanks so much for the virtual hugs and support. I posted today about my initial feelings since the diagnosis, but as far as being her mom – nothing has changed there. She is an amazing kid and I am really lucky to be her mom. xx

      Liked by 1 person

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