Worry

It was probably two weeks before Rex was born when I first noticed that August seemed a little withdrawn. I couldn’t put my finger on exactly what the issue was, but made a mental note to mention it the the Occupational Therapist who visits each week through our state’s Early Intervention program.

Life is hectic, however, and I forgot one week and the next week I was actually having a baby, and so it wasn’t until I took the twins for a well-visit the week after Rex’s birth that I remembered what it was that was bothering me: August had stopped responding to his name. I gave a little demonstration in the doctor’s office and called his name. He didn’t even blink and I could feel all the air seep out of the room.

We ran down a full list of reasons why this could be happening and the pediatrician urged me to get his hearing tested. Meanwhile, alarm bells were going off in my head because I know, thanks to the extended tour I’ve had of Special Needs Land, that a child failing to respond to their name can be an early warning sign of autism.

I’d love to tell you that I responded with grace, but the opposite is true. Instead, I took a long shower and cried my eyes out. I cried because I was fearful–afraid that another special needs child would split my attention and resources leaving both children with not enough. I cried thinking about hours of work and research that would lay ahead. I cried because it’s been a hard couple of months–pregnant with twins under the age of one–and I had hoped for things to be easier for a while.

After my big cry I got to work–I emailed some friends of mine who had children with autism. I sent a text to August’s OT and another to Charlie’s former speech therapist who also has a grown son with autism. I watched some videos on YouTube trying to get a handle on what autism might look like in a young child and trying to see what kinds of interventions are appropriate.

I let myself admit that the idea of another special needs child was exhausting, but only briefly before getting my head on straight again.

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I wrote the above over a week ago and let the post sit there–I couldn’t bring myself to post it. It was as if posting it would make it real.

We’re in the process of getting a hearing evaluation lined up for August. At this point, we don’t know if we’re dealing with a hearing issue or something else. I do know that both of the twins have been delayed all along, and this could just be yet another symptom of that. They do eventually meet their milestones–just later than expected. While we’re jumping through hoops, I’ve been busy trying to enjoy my little guy just the way he is–taking him on little mom-dates when the opportunity arises and making sure that his brother doesn’t steal all the attention. I can’t control what the future will hold, but I can be sure that I won’t let it ruin the present.

 

 

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Comments

  1. Beautiful post. I am actually in the process of getting Dustyn evaluated for sensory processing disorder and eating problems. I have been putting it off saying he is just a boy. I like you wasn’t ready to have another son with special needs. now his doctor things he has ADHD. It is a long, hard, exhausting road. I will be praying for you all.

    • I actually just read an article in the doctors office yesterday saying that the sensory processing disorder is a new things that doctors are using. It is mainly in boys. Good luck with this. If I find the article again, I’ll send it to Katie.

      • Thanks, Kasey. I’m not sure what it is. One of the therapists suggested that he just might not be an auditory learner, which wouldn’t surprise me at all–I’ve never been one either.

  2. *hugs*

    thinking of you all – you’ll figure it out.

  3. keeping you all in my prayers and in my heart, Katy. I hope it’s just a delay and nothing more….please know you are not alone. Keep us posted?

    xoxoxo
    HUGS

    • I will. The evaluation wheels turn very slow, but I will keep everyone up to date on what happens.

  4. Bugladynora says:

    Katy,
    You have a ton on your plate, and I know adding one more thing is crazy. I have been feeling rather buffeted by life lately too. Good and bad all wrapped up together. I am teaching a VBS this week and this is tonight’s verse. I needed it. “God is our refuge and strength, A very present help in trouble. (Psalm 46:1 NKJV)” helped me, and I pray Augusts hearing problem is just a delay and if not I know that will be another hurdle to cross and you and crew can do it.

  5. Limbo is never a comfortable place to be…you are a strong momma. I will be sending positive thoughts your way.

  6. My son never responded to his name until much later than 1 and waved around 16-17 months. I could drop a huge book on the ground next to him and no response. He never based his audiology exams objectively, but subjectively they could tell that he heard. He would not do the test where they stuck things in his ear- no way without medicating him or the like (so that did not happen). I went the autism route (evaluating for autism) with early intervention and had evaluations at 15 months or so. He had receptive language delays at that time (I really could not have confidence that he understood anything at that age). Long story- short….

    My son is 7 and he is fine. He had an intense personality for his toddler years- that made him very tough, but he was overall very happy (but hard). He is now a whimsical child- that I adore. I still can call his name over and over and over and he will not respond (at times). Sure, selective hearing, but he can focus like the best of them and he has an uncanny way of showing no expression at all to Indicate that he heard you (even if he is choosing to ignore you, usually with most people it seems you can see that they have heard you(after a while) – even if the decide to ignore you).

    Your son will have his own story. However, the one common thread is that it’s surely early when they are 1 years old. That said, you are surely correct to explore his hearing and continue with Early Intervention, but I am just sharing my abbreviated story to suggest that I still have no idea why my son had those delays. Of course, I was scared even more because he was hospitalized right after his 1st birthday with a bad reaction to the MMR shot (about a week after it was given).

    You seem to have an amazing understanding of your children; your family is beautiful and your son will always be beautiful- delays or no delays. I remember the days with my son quite well; my one regret is focusing too much on my worry and not enjoying those early days as I would have liked. Despite your concerns, continue the path you seem to have chosen – enjoying your gorgeous boy.

    • It is early. My husband thinks everything will be fine and thinks I’m overreacting, but I do like to keep on top of things just in case. Not every delay is explainable–some kids are just slower than others–and I am keeping that in mind.

      • I agree with Andre. With four little boys in the house, August may not realize he has a name, especially if you’re calling him nicknames. You’ll have plenty of time to worry. Praying he is as perfect as he looks.

  7. Oops, I mean to write he never “passed” his audiology exams (had several because he just wasn’t cooperating). He was difficult! And those exam days would leave me in tears.

  8. Here is what I know about you, Katy, whatever happens you will dig in and be the very mama that August needs and you will do whatever is needed for your boy! And remember, you have had some excellent practice at being an advocate mama! Whatever comes, you can handle it. Just take a deep breath. It will be okay. Whatever happens, he is still the same boy you adore right now. HUGS to you girl. Prayers going up for your mama’s heart to be at peace.

    • You are right, Joell, and I appreciate all the wisdom that you bring to this particular situation. Either way, he’s my sweetheart.

  9. Melissainkdesigns says:

    Hope you get answers, Katy. These boogers love to worry their mamas sick!

  10. Hello Katy, I follow your blog but don’t know you personally. Your family is just beautiful. Try not to worry yourself sick while waiting on the hearing tests. Both my boys didn’t follow typical milestone charts and so I guess you could term them “delayed”, but they are both now happy “normal” kids. Each child develops in their own time when they are ready (both mine were late rollers/walkers. I guess the household has had a huge upheaval with a new baby arriving, so maybe he is also adjusting to this? You are stronger than you realise, but I can understand your worries and fears. Thinking of you and hoping things turn out ok : )

    • I keep trying to remind myself of this–that these “milestones” are based on averages and a kid doesn’t have to meet them in order to have a successful life.

  11. Regressions are scary. Props to you for noticing. The hearing test is a good step, if you do have to move forward with ASD concerns everyone and their dog will ask if you’ve had his hearing tested. Makes things go quicker.

    All ASD kids are different, but I did want to let you know that you will certainly be able to give Gus all the love and attention he needs whether he has it or not. You’re an old pro at advocating and if I can manage it, I know you can. My experience with my son (who turns 3 next week) has been much harder for me to handle as a person than it was to handle as a parent. If anything, that part has gone really smoothly. Especially with early involvement.

    I’m always around if you have questions or concerns, although I feel silly saying that because I think you can handle this stuff way better than I ever have. But still. Hugs.

    • Interesting. I wonder a little about what you mean about handling it as a person? I do know that I never went to the doctor before I had Charlie. NEVER. I learned real quick how to suck it up and get on with the appointment marathon. Now I don’t even notice.

  12. I read your blog often. Just wanted to say that I’m thinking about you and to “try” not to worry about things too much. I jump to conclusions all the time. It could be something very simple… like he will get there when he gets there. (my motto)

    You’re an inspiration to me!

    • That’s a great motto–I use it all the time with regards to Charlie. Maybe I need to expand it to include some of the other little people in my house as well?

  13. *big hugs* You are such a strong woman Katy. I don’t think “grace” means nodding blankly at disturbing news, I think it means letting the emotions out, taking a deep breath, and then moving forward to do the work that must be done.

    • Thanks for that. Some times I think I have to handle everything with perfect calm.

  14. ((hugs))
    I can say anymore too choked up

  15. Ok I am back.
    You did the best thing you need to cry it out so that you can act.
    Just attended a workshop and interestingly the speaker addressed the hearing test requirement. She said that infants/toddlers with a hearing disability my not hear his name but would respond to the antics of the parent /tester. A child on the spectrum would appear as not even knowing that you are there.
    It is a bitter pill to swallow but you know with your experience that it is not a diagnosis that you can’t handle.
    Keeping you as always in my thoughts. Saying a prayer for Gus.
    And remember that regardless of the labels they will always be the sweet sweet human being that bring you much joy.

    • We’ll see about the hearing test. Charlie flunked them and he hears fine. My friend’s kid passed and she’s profoundly deaf. I’m not convinced they help.

  16. {hugs}
    Hope you get some answers soon.

  17. Praying for you and your crew as you wait for the hearing test and the results.

  18. Hugs! You’ll come thru all this I know you will.

  19. Kathryn says:

    Hi Katy,
    Would you mind me asking what the red thing on August’s? arm is.I aplogixe if I called him by the wrong name as a twin myself i hate mixing up other twins.

  20. Ugh, I want to say a million encouraging, supportive things but I know this space, of having one with special needs, your hands more than full and then teetering on the edge of having one more with a diagnosis. It is very worthy of a good cry in the shower and a “why us?”
    You face it just as I do, cry it out then get to work. I hope that it is just a delay and he will catch up and you have no more diagnoses to investigate. I’m always here if you need me, truly. xo

  21. meghatronsmom says:

    It’s ok to cry, you’re human! Keep us updated. Will say some prayers. I’m hear to help if you need anything

  22. Hoping and praying he doesn’t have autism, but something tells me that if he does you will be able to handle it. Anyone who can handle a brood of little boys under age 5 can handle anything!!

  23. Ok, so you know what needs to be done… as much as it stinks. I’ve got my fingers crossed for you. Maybe he just needs ear tubes? Please keep us posted!

  24. No matter what he needs, it’s obvious that you are just the mama to make sure he gets it. Thinking of you, and hope this is all resolved in the best possible way. His sweet little face just melts my heart.

  25. Oh Katey. I’m spending my summer working with kids with autism in a therapeutic recreation, camp situation – everything from working 1:1 with them to working with their family as a whole. I’ve seen kids and their parents at all stages – recently diagnosed and struggling to make sense of it all, all the way to the old pro’s.

    The spectrum is so big, and yes, it is scary.

    But no matter what the outcome is, the fact that you are being proactive about it is the important thing. August is in the best hands possible.

  26. I’m just now reading this. Just want you to know that whatever it is, I’ll be here for you across the miles.