Things I Don’t Want to Say

I’ve been planning to write this post for a month or so. I’ve held off for a few reasons. One of them is that I know that a lot of you will be stunned.

It’s about Tesser. I’m worried about her.

 Things I Dont Want to Say

So many of you have met her. And everyone raves about what a beautiful, sweet, smiley, happy baby she is. And she is all those things.

She also hasn’t progressed in any notable way in the last 2 or 3 months. Besides sitting and adding a combination scoot-roll mobility to her gross motor repertoire, it’s been stagnant. Her language has stalled out at just a little bit of babbling, light on consonants. She will respond to voices sometimes. She plays intensely and concentrates hard. Talking to her doesn’t give you smiles or feedback. She doesn’t mimic.

Yes, she is beautiful and sweet. And I’m also worried she’ll end up with an Autism diagnosis.

It’s preliminary, of course. This week she has her 9-month pediatrician appointment. I’ll talk to her doctor. And depending on our conversation, I’ll probably make a call to Early Intervention to see about having her evaluated. Delays have to be a certain amount behind before they can step in. But I’m seeing significant enough receptive and expressive language delays that I don’t feel comfortable.

This feeling has been creeping around the edges for months.

It’s a big change from how I used to feel. I was so certain that she wasn’t. Not this baby. Not this little girl that I held on my lap every day during Graham’s therapy and smiled at.

tesser collage 1 Things I Dont Want to Say

How could she look at me so deeply all the time and have anything wrong?

Of course I know better.

And I know what you’re going to want to tell me. You want to tell me she’s FINE. You’ve SEEN her. There’s NOTHING wrong with her.

But everyone told me that about Graham, too.

A child can be bright and charming and still be autistic. And I can’t put off thinking about it any longer.

So I’ll be talking to the pediatrician and possibly getting her evaluated by Early Intervention.

I am trying to learn my own lessons and not grieve for a lost future when I don’t even know if it’s lost yet. I’ve always seen those hyper-verbal little babies, so inquisitive and outgoing, and always knew I’d have one.

But a few weeks ago I laid Tessa down for her nap and I just had this sudden strong feeling. I am going to have two autistic children, I thought. And it will be okay.

Proclaiming any diagnosis right now is hilariously ahead of the game. But I’m getting myself ready for whatever news there is, good or bad. I’m not an expert.

But I know one thing.

me and tessa Things I Dont Want to Say

It will be okay.

 

26 Responses to Things I Don’t Want to Say

  1. Miz Kp says:

    I am with you on having your Tessa evaluated. Your peace of mind is priceless. The information that you get from an evaluation can help you decide your next move. Thanks so much for sharing your fears and thoughts on this with us. I am sure there are many out there who can relate and empathize with you. Coming from a mom of an autistic son, your worries about her being autistic are understandable. I believe you are making the right move. Take care.

  2. Kelly Hafer says:

    You know that you are doing the right thing by talking to your team about this. Doesn’t make it any easier, but it’s the right thing to do. Part of the issue may be that you know too much. I’m in the same boat with that, trust me. Regardless, as you say, it WILL be okay. Best wishes for you and your beautiful little girl.

  3. That’s hard. That’s so hard. I went through it with Peyton, he was fine. I’m going through it with Abby, a little. 1 in 10 children with Down syndrome also have autism. The geneticist said her chances were pretty high. I keep waiting for her to regress, I see autism in everything she does and does not do. But I don’t FEEL like she has it…and therein lies the difference.

    I hope you’re wrong. I hope you’re crazy. But I know those mother’s gut feelings. And I know someone like you knows what you’re seeing and what you’re feeling. I just…I just hope it’s not. I know you’d rock it, no matter what. I just hope you don’t have to.

    I love you. You amaze me. And you will be okay, and so will she. She’s every bit as lucky to have you as you are her.
    Lexi Sweatpants recently posted..My Thanks to the Spouses of Our Troops

  4. Alysia says:

    It will be okay. Whatever happens. Because you have an amazing support team who will get you through. I promise.
    An eval is just an eval. It can’t hurt. Only help.
    I wrote this when we were where you were http://trydefyinggravity.wordpress.com/2010/06/01/history-repeating/
    And then this when someone else suggested there was something more: http://trydefyinggravity.wordpress.com/2011/06/14/bad-day/

    There for you with every step.
    Alysia recently posted..Payphone

    • Jess says:

      Your experience is one of the reasons I’m not sure I’ll be calling EI right away. We may have to wait till 12 months until she qualifies if she stays on this track. Hopefully I can get a little guidance.

      It’s funny because so many ASD parents with more than one child affected say they were totally different. Actually, Tessa’s receptive/expressive delays are very similar to Graham’s. (The only major difference being he did substantially more babbling.) Of course I didn’t *know* they were delays then. At least we can chat about getting a hearing test done to get that out of the way. One of the things we did with Graham at around the same age that ended up helping us get our ASD dx faster.

  5. Cheryl says:

    You’re absolutely right – it will be okay, no matter what “it” is. Sending you lots of love.
    Cheryl recently posted..Doubt

  6. Patty says:

    I am in a similar boat with my three-year-old. When he was a baby, I was so sure he was fine. He smiled a lot and seemed to hit his milestones on time. He talked well, etc. But now, I can’t shake the feeling that something is amiss. Sure, he talks a lot, but he cannot answer questions and much of what he says is indecipherable. And he hates new situations, screams a lot and is very inflexible. Add in his sensory issues and I can’t deny that something is up. I will probably get him looked at after Christmas. Right now, I just cannot face it. But thank you for the reminder–it WILL be okay for you and for us.

  7. J-Nut says:

    First of all, look at that happy little girl! She is adorable in her pink hoodie :)

    I remember that feeling so well, of knowing something wasn’t right and having everyone tell you “he’s fine.” Moe was happy. He made eye contact. Maybe he was just a late bloomer. And maybe your girl is too. But maybe she’s not. Trust your instincts on this one. You know what you’re doing :)
    J-Nut recently posted..What Moe Can Do: Imitate

  8. Jim W. says:

    gunshy…

    It WILL be okay, regardless. *hugs*
    Jim W. recently posted..Giving Thanks

  9. amanda says:

    I also know the feeling. My son was diagnosed at 4 years old when i was 4 months pregnant with my daughter. When she was born, I found myself evaluating her every move. Does she look at people in the eye? Is that weird thing she does with her hand a stim? Is she spinning that tire a little too intensely? I worked myself up into such a frenzy that I wasn’t enjoying the delighful little girl she was becoming. So for my piece of mind, I had a team of evaluaters come in when she was 9 months old and evaluate her. And you know what? She was right on track, even advanced in social. She was very clingy to me. Wouldn’t let me out of her sight. But she still warmed up to them and started interacting with them as long as she was safetly sitting in my lap. Today she is a very sassy, willful 21 month old, and while I still find myself assessing her every once in a while, I try to push it away because, even if she was autistic, I would still treat her the same.

  10. April says:

    I had a friend growing up whose sister has severe autism. Her family was struggling in an era where autism information was profoundly limited as was services and research based intervention strategies. My friend and I were both very mature and intelligent children and we shared a lot about her struggles. As early as eight years old I was digging in encyclopedias and checking out books in the library to better understand my friend’s predicament. I grew up having a good understanding of what autism “is.” That experience combined with my degree in Child and Family Development served me well. From the second day in the hospital, we knew SOMETHING was different about our buddy’s development. We struggled with the difficult temperament, the dietary issues, sleep issues, etc. I remember my son being nine months old and while talking to my family on a visit remarking that “Some part of me wonders if it’s autism.” I was quickly shot down on the grounds that my son was adorable, charming, affectionate, sweet, and just too smart for autism (“too smart” now being an interestingly operative description). In fact, I was kindly put in my place that it was a parent’s job to love his/her child, not to judge him, that we shouldn’t compare him to others, that we shouldn’t jump to conclusions, that they grow out of “it” (now defined as autism), and that just because I was brilliant and ahead of myself as a child I should not just assume my child will be the same. *ouch* But when you know what to look for, nine months is the prime age to really see the differences more clearly. We, of course, went on to have Ethan diagnosed at two years of age, but prior to that, I went with my gut and was utilizing strategies for intervention I’d learned through college.

    Best blessing in the world. Go with your heart. And know that those of us in your shoes….we completely understand.

  11. Oh Jessica…this made me all teary. I only have one kid but I know so many parents feel “safer” with their girls because the odds of the girl with autism are less. But it happens. And your baby girl is a beauty. She will be okay – autism or not. Trust your gut. And if you are right – you have an amazing support system in place. You are no longer a rookie trying to figure it out blindly. Your kids will be okay. And so will you. HUGS!

  12. Sheila says:

    She is only nine months old – have caution, be trepidatious, but don’t jump to conclusions! My son is autistic an verbal, he had all the claimed milestones…but at two we lost a lot… that’s when we knew. Kids ebb and flow, you know the signs so you see them right away, but in a month you may not…give her some time and you may be surprised. Not a year – but six more months and see what she does. Each kid is so infinitely different…

  13. If by Yes says:

    Okay, totally understand where you are coming from, but remember I made a post when Owl was 10 months and not imitating?? He never really mimicked. Daycare lady was saying just the other day that he still doesn’t repeat stuff back to her. But he’s totally on track. Also, my friend’s son never babbled properly but he signs and has some words now. Too early. Go ahead and get her assessed if t will ease your mind though.
    If by Yes recently posted..Potty Training: NO MORE EXCUSES

  14. Kristin says:

    It will be OK. Because you are an incredible mom and you are doing everything you can for your beautiful children. And because we will be standing beside you every step of the way. xo

  15. Angela F says:

    I am the parent of 2 autistic children and have been in your shoes. It will be ok. Listen to your gut it’s usually right.

  16. Niksmom says:

    If your gut says something isn’t right, by all means, listen to it. There may be other, simpler explanations for the delays such as hearing or vision issues; as we learned in our journey with Nik, both can present similarly to autism especially in young children. It’s *alway* best to err on the side of caution especially when there is already a child with autism in the family. I would have to disagree with IfbyYes about the “too early” or the fact that a daycare provider says another kid is on track. My son was already being seen by a very highly regarded SLP and she never picked up on the autism either. In fact, it is often the children with language deficits who are most difficult to assess early on, but that doesn’t mean they aren’t autistic. Trust yourself and know you’ve got a good support network.

    As you said, it will be okay. It will.
    Niksmom recently posted..A Month of Gratitude – Day Nine: The Weekend!

  17. Tessa says:

    First of all, lovely name for your baby! I want to repeat to you what you’ve already figured out. No matter what, it will be okay. I have one “typical” child, and three on the spectrum. It’s not nearly as bad as most people think. I promise–it WILL be okay.
    Tessa recently posted..You Might Have A Kid With Autism….Part 2

  18. Madmother says:

    I have 2 sons 19 months apart. My oldest (nearly 15) has Asperger Syndrome. My youngest (13) is on the gifted spectrum. Both are different paths to which I thought my children would follow. And sadly, the oldest has far more support and help than the youngest, who I think has the more difficult journey.
    But they both have the most amazing gifts to go with the struggles, and they are both full of life and joy and love and unique quirks. Not the future we expected, but by God a future full of fireworks and big changes to the world.
    It will be okay, just remember to breath.
    Madmother recently posted..Oh Dear Lord.

  19. jillsmo says:

    ((((((YOU GUYS)))))))))
    jillsmo recently posted..Dead mouse revisited

  20. Stimey says:

    Hugs to you. You’re such a good mom. And, yes, it will be okay.
    Stimey recently posted..What Happens in Jamestown Absolutely Doesn’t Stay in Jamestown

  21. JoLee says:

    No matter what Tessa is lovely and perfect. I miss you. Sending my love.

  22. Jenny says:

    I think red flags go off a lot sooner when you have already gone with it – right or wrong. It is best to evaluate now – why wait? The peace of mind you’ll have with either result is worth it. If she shows up not on the spectrum, then you can relax, at least for awhile – if she shows up on the spectrum, you’ve got a headstart in finding your way around things. And you’ve done so well with Graham – you will all be just fine. Best wishes.

  23. Kori says:

    I know that I’m a few days late, but I wanted to say that I thought this any incredibly brave post. Keep us updated. Your kids are both so cute and wonderful.
    Kori recently posted..I promise that I, too, am bored of posting about my health

  24. [...] for the Messer, I kind of left everyone hanging after my freak-out post a while ago. There hasn’t been any real change. I’m still worried about her development [...]

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