July 16, 2015

The Journey with Autism Begins

Through sharing our story of having a toddler with autism, I hope it may help someone else going through similar. Our story begins with the day M2 was diagnosed as autistic (having autism spectrum disorder) and our journey officially began. It was a very difficult, emotional day, which makes this post one of the hardest I've ever written.


A Toddler with Autism

As I mentioned here, she was diagnosed with autism, mild-moderate, just over a month ago. That day was one of the most difficult of my life. We went in for baby B's well-child appointment the day before and took M2 along. While we were there, I told the doctor (they have the same pediatrician) that I'd talked to her early-intervention therapy team. All of them recommended that she get screened for autism, especially the therapist she's known the longest and who knows her the best. She has the team in place to help with her severe speech delay. I was fully prepared to have to argue with the doctor about the screening, then to have to fight with insurance to get the referral pushed through. When the doctor agreed immediately, I was shocked. When he said that there was an available appointment the next morning if I was willing to drive the hour back out to do it, I was dumbfounded. Rather than waiting another month or more for an appointment, I jumped at the one for the next morning. I figured I should before I chickened out and put it off again, as I'd already done for months fearing what we'd be told.

The developmental pediatrician wanted to see all her assessments from the early-intervention team as that would give him a better picture of what all is going on with her. Those therapists see her weekly in our home so they get a pretty good picture, one a doctor who has never met her might not. I quickly called her coordinator to get her assessments, figuring at 4 p.m. there was no way we'd get them. Amazingly, her coordinator was there and sent them over via email immediately.

A and I decided that taking B along with us to the appointment would just be distracting from M2. Instead, he stayed home with B the next morning while I drove M2 the hour back to her developmental pediatrician appointment. I spend the most time with her and have been coordinating her care, so it just made the most sense for me to take her. At the appointment, the doctor got to see the full M2 as she was bouncing off the walls and doing many of the things we were concerned about. She did not sit still for 30 seconds the entire appointment.
I managed to answer all the doctor's questions while keeping M2 from running out of the place. We spent hours there going over everything. I wasn't sure if we'd get a diagnosis that day. I already knew from A's coworker going through the process with his son that if the doctor had any questions or doubts, there would need to be more appointments, possibly with additional specialists. The developmental pediatrician told me that he had seen enough, plus with her previous evaluations, that he was confident in making a diagnosis then.The moment he said, "diagnosis," I knew I wasn't going to like what he said next.

He said there was no question that she was autistic. As soon as I heard that, my stomach dropped and my heart broke. I started telling him things like, "But sometimes she's fine. This isn't all the time!" and, "But she does XYZ." Anything and everything I said, the doctor simply responded nicely with, "That just proves my diagnosis and that I'm right even more. That's exactly what autism is. There is no way you could be making all this up or have it wrong, it's too obvious."

I wanted to cry at that point. Mind you, I am not a crier at. all. Here my happy little girl is bouncing (literally) all over the room and off the walls, as a doctor tells me she is autistic. A diagnosis that changes her life and ours. Something that won't go away, can't be treated with a pill, and that she will struggle with her entire life.

I asked the doctor where he'd place her on the spectrum. He said that it wasn't too important, it was more important to get her set up with therapy and get her help, but that he'd place her as mild-moderate. As for B, he said he is at a higher risk but that I should already be seeing some signs. The signs B is showing us so far are ones that tipped us off to the fact that something is going on with M2. He's totally different from her so far. Things M2 did as a baby that we excused as being just her, something she'd grow out of (but didn't) or just her showing her independence were really red flags. There were so many that we didn't see until we saw how B is and until M2's behavior started making the autism too obvious to ignore. Still, especially after his head injury soon after birth, we worry that he will have special needs as well.

I spent the rest of the appointment trying not to cry in front of this doctor, and especially not in front of M2. How do you act after a doctor tells you that about your child? If I cried, I'd look hysterical and upset M2. If I acted like I didn't care, I'd seem like an inattentive, uncaring mother. If I acted happy, I'd seem like a nut job. No emotion seemed "right" and I had no idea what to say or do. I went with the "upbeat, we can handle this" attitude, even though I was wondering how in the world we'd make it through and how in the world M2 would over come it.

The doctor explained that we needed to get her set up with therapy and that he'd be sending an overview of his diagnosis. He went over why he'd made the diagnosis, pointing out things that I'd never even noticed or equated with autism. Or even any issue. I think if M2 had been the second child and I'd had more experience with what's "normal," I would have noticed more.
After the doctor ended the appointment, a nurse came in and offered to wheel M2 around the center in a wheelchair while I waited for her pediatrician to come in and talk to me. I so appreciated having a few minutes alone. Hearing that your child has autism is difficult. Very, very difficult. I know that it could be so much worse. But that doesn't take away the hurt of what she and we are going through and will go through. No parent wants to know their child is going to struggle. Right now, we don't even know how much. We don't know when or if she'll really start talking. Speech therapy isn't working. Her delay stems from the autism and so far no techniques are working. She also has sensory, behavior and other issues. We have no idea what is to come.

M2's pediatrician came in and told me that he agreed with the diagnosis. The nurse came back with M2, who was ecstatic that she got to go for a ride. She had absolutely no idea what had been going on or how much had just changed in the instant I'd been told she is autistic. Seeing her so happy and so unaware ripped my heart out even more. She has no idea what is to come in her life or that anything is even wrong. I guess in some ways, that's really a blessing that she doesn't know.

The ride home I called A and spent trying not to cry while driving. I'm happy to have a diagnosis and to know it's not all in my head. On the other hand, I'd really have liked to be told, "Lady, your nuts. Stop doing XYZ and your child will be perfectly fine. Just get your act together." Despite that, and despite the doctor telling me that there's no way I could be making stuff up (and that I did an amazing job handling her during the appointment, he was impressed how well I managed to do so), I still wonder if maybe I'd said or done something differently, he wouldn't have given that diagnosis. It's hard not to second guess everything and to wonder.
Since the diagnosis, I've gotten lots of comments and advice. Some downright upsetting, nasty and unsupportive from people from whom I actually expected the most support. Some way off base as the person simply doesn't understand autism or is a family member who also doesn't want her to struggle. Others very, very helpful. Our family and closest friends are offering the support they can. As you read here, one of M2's godmothers is on the spectrum herself. Her reply when being told of the diagnosis was, "Well, I guess she's really lucky to have me as god mom!" And she is. I know Lindsey is going to help her so much through her journey. None of her family or friends are treating her any differently. Family who initially questioned the diagnosis are on board and supporting her once I explained what was going on better. Her uncle asked me why we'd never told him what was going on sooner, when she was a baby, so he would have known and been able to maybe do something. I told him it was because we honestly didn't even realize it ourselves. I think deep down we wondered, but didn't want it to be true.

We still don't want it to be true. I still hope we'll find out in the future that the doctor was wrong. Daily, though, I see why he's right. I also remind myself often of the best, most supportive, and helpful thing I've been told since she was diagnosed as autistic. As soon as we found out, I told her therapists who'd been waiting to hear. One told me, "Remember, she's still the same awesome little girl who you love so much. Having the diagnosis doesn't change her at all. And it doesn't change how much you love her." And she's right. My little girl is freaking amazing.


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31 comments:

  1. I love that you are sharing your story. I have the best results with families that don't hide. The diagnosis is overwhelming. It does get better!

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  2. My youngest son had a speech delay, but ended up with ADD. It's s struggle sometimes, but worth every second <3

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  3. You know I hope the doctor is wrong too. Doctors can be wrong. I can not tell you that I can identify with you because I can't, but I can sympathise with you and knowing a women in my playgroup who is an advocate for children with autism and disabilities in general, she would tell you to find a support system NOW. Connect with other moms with children like yours. You can look for facebook groups in your area, but the sooner you find that support and those connections the less overwhelming this all will feel. I can tell you that you will make it through this, one day at a time and that despite this diagnosis, everything will be ok. You children will continue to have happy healthy normal lives. Thank you for opening this window to what people go through all the time. I know it was heart wrenching.

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  4. Thanks for sharing your journey. I have 3 nephews with autism and boy has it been a learning curve. But these children are sooo special. I am grateful to have them in our family. Keep going it does get better.

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  5. My friend's daughter is autistic-non verbal. Just like your little girl she is awesome! She finds ways to tell us what she needs us to know.

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  6. I am sorry to hear that. I have no idea how all of this works as we do not have this in our family, but through all the blogs I read, I have read that some parents have found great help with this by having their child follow a certain diet routine. Best wishes to you and your family as you work through this :-)

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  7. It sounds like you have a great doctor that you didn't have to fight with them. I have had some doctor's that I choose to no longer use since they are difficult.

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    1. Yes, we got lucky. I actually expected to have to fight this doctor on it, I was amazed when he was on board from the start.

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  8. Your daughter is amazing, and you are an amazing mom. I'm here for any support you need.

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  9. So sorry to hear about this. I do appreciate and admire that you shared your story with us.

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  10. Yes, she's still the exact same girl! I know there will be some challenges for you and for her, but how wonderful that you caught it already and can start gaining knowledge!

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  11. We have a friend who's son was diagnosed with high autism. It's a difficult journey. Yet God is good. Even in the storms of life. Praying for you and your family.

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  12. Elizabeth O.7/18/2015 11:32 AM

    I'm sorry to hear about what you are going through right now. I have a friend whose daughter is autistic. It was hard for her to accept, of course, but she needs to be strong for her, especially that she is a single mom. They've gone through a lot of therapies and treatments. She is now 9 and she's doing ok. You wouldn't even know that she is autistic unless her mom tells you or you've been with her for a long time. All I can say is just be strong and be there for her.

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  13. Thank you for sharing your story with us. It hurts more when the people you expected to understand would say upsetting things to you, just don't mind them and focus on M2 instead. She will need all the help she can get and you have to be strong for her. I am sending prayers your way.

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  14. i'm passing this over to a friend that will relate. thank you for sharing your story.

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  15. I felt that with you when you wrote about the diagnosis. I think it's wonderful that you're sharing your story. I know it's going to be a great help to others.

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  16. Awww mama, thank you for sharing. It's so hard to get a diagnosis, any at all when it's your baby! Hugs!

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  17. The scariest part is the not knowing. I can't even imagine how hard that is. She's so precious though and a diagnosis... no matter how scary... can't change love.

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  18. What a beautiful story. Your daughter is fortunate to have you! Because I know many people with autistic children, I am becoming more and more aware of how magnificent these people are. The children, of course, are terrific. It's the parents who are God's blessings to this earth.

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    1. Thank you so much for your kind words. I was so touched reading this. I'm not perfect by any means, but I do my best.

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  19. Thank you for sharing your story! Your daughter is amazing! My nephew was diagnosed with autism when he was three. I know it's been a rough road for my sister but they have a great support system in place.

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  20. I just started reading your blog posts tonight. I just want to offer my encouragement to you. My son was diagnosed with autism 2 1/2 years ago (at the age of 2 1/2). I remember how devastated my husband and I felt. We spent much time in prayer. We are fortunate to live in a county where our son was tested and found eligible for the county-run preschool for autistic children. The program and teachers were WONDERFUL for our son and helped him so much. Anyway, just want you to know there is another mother out there who understands in some way what you are going through. (Not sure if you want any advice from a stranger, but it might be helpful to get your daughter into a preschool class for autistic children through your county. Last week my son started Kindergarten and I can see how important it was for him to be in a preschool program as a preparation for Kindergarten and beyond.)

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    1. Thank you so much for this! We are working on getting her into a special-needs preschool. Right now we're in the middle of getting all the many evaluations done to have her qualify and be entered when she ages out of her current services. It's great to hear that it helped someone else so much so I know we're on the right track. :) I hope your son is enjoying kindergarten!

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  21. Thank you for sharing your experiences with your daughter! My son is just starting with early childhood intervention. They haven't diagnosed him with anything other than delays yet, but he's only 16 months. Knowing that Autism is a possibility, your strength and your experiences help me to know whether he is on the spectrum or not, we'll deal with it! I love my little boy no matter what difficulties we face!

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    1. As I told my daughter today, she's perfect. If anything were different, she wouldn't be her! It's hard, but as you said, we love them no matter what. Early intervention is so important and helps so much, it's great that you've gotten that set up for him.

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  22. Well, you know exactly where to go from here. That's a huge foundation to work from. And yep, still amazing, you don't need a diagnosis for that one. :)

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    1. I'm still learning more and more. It seems like things just keep changing. That does make life more interesting for sure, at least. lol We'll get there. :)

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Thanks for taking the time to leave a comment. As a busy mom, I'm not always able to respond to each one, though I read and appreciate them all.