Talk to Me

We finally had Joey’s speech evaluation . . . sort of. Joey absolutely refused to cooperate with the therapist: he shouted; he wept; he threw things. This was not a surprise to me—the surprise was that some children his age would be willing to point at the bird (and so forth) when prompted. Another mother suggested that U ask to have him evaluated at our house—but I’m sure that the results would be much the same. After all, this is what happens when I try to do preschool things with him. Is this not normal?

At his last appointment, Joey’s pediatrician asked whether he is an unusually difficult child. I have no idea. How could I?

The speech therapist (who works at a center that serves the needs of children with special needs of all kinds) told us that there would be no point in getting Joey speech therapy, because he is too uncooperative to benefit from it. She said that we could have him reevaluated in a few months, if we wanted, and told us that we should talk to him about what we’re doing during the day in the meantime. I weakly told her that we do that already, and then we drove home. Mr. Book mentioned that for almost a year now, he has worried that Joey might be depressed.

At one point, when I was in college, my mother (who was reading When Someone You Love Is Depressed at the time) called me and blurted out: “Susie, I think you were depressed as a toddler!” I told her that while I don’t remember, yeah, that sounds right. My husband, as young as four years old, was prone to long stretches of seemingly unprovoked crying. His parents would ask whether they could help, and what was wrong and he would say “No, it’s just my problems.” We’ve both struggled with depression for most of our lives, is what I’m saying, and so it shouldn’t have been such a shock to hear and see that Joey might have inherited more than his father’s pretty blue eyes. And my strong desire to protect Joey—much stronger and less rational than my similar feelings concerning Kit—makes more sense when connected to a fear I was not articulating even to myself.

I am fortunate to be a part of a diverse and excellent parenting group which started elsewhere and now lives on Facebook. After the failed speech evaluation, I finally talked in detail about Joey—and moms of autistic children bluntly, gently, told me that I needed to get him evaluated for more than his speech. I was given phone numbers and handholding.

And then the speech therapist called and left a voicemail. If I can read between the lines a bit, she sounded like a person who had gotten a scolding; she said that the director of the clinic wanted Joey to be seen, and as soon as possible, and that she had a parent-report evaluation to perform when I had the time. I called her back the next day, and answered a long series of questions that started “Does Joey . . . ?” and “When Joey was a baby, did he . . . ?” Almost every “correct” answer was yes—I could tell that the evaluation covered deafness, autism, and developmental delays of many kinds. Joey is not deaf, and so I got those questions “right”—but too often I was answering no to the others. “Does Joey imitate you?” “Does Joey engage in pretend play?” “Does Joey take an interest in other children?” No. When she was finished, there was a follow-up question: “Have you had Joey evaluated by a behavioral psychologist?” No. “I would very strongly recommend it.”

Today we are seeing Joey’s pediatrician to get a referral to a behavioral psychologist.

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11 thoughts on “Talk to Me

  1. Hugs, Susie. I’m sorry that you are faced with this, especially with the mister away. Keep moving forward and the other side of this will be much brighter. You’ll get through this, Joey will get through this and be the most amazing Joey that he can be.

  2. Thinking of your family from the other coast, and amazed at your strength/ability to take care of this right now. You’re a very capable, impressive mom!

  3. Also thinking of you. I’m a big believer that knowing is better than not knowing when it comes to anything medical. Kids can be depressed and kids can also be sad and have that be a reasonable response to the lives they’re living. (Not calling your life depressing, but I can’t come up with a better way to say that Joey’s temperament is surely coloring how he sees the world.) I’m glad you’re getting evaluations and resources. Mara got a lot out of preschool at 3 because she needed to learn how to be social and still doesn’t do that as well as or in the same way as other kids, but we were lucky enough to find teachers who also saw her many strengths. I hope you can find something like that for Joey, a way to take a little of the pressure off you and onto some professionals but professionals who care about and respect him. So many fingers crossed for you guys to get the right help.

  4. I’ve been struck by how sweet Joey seems. I don’t have any experience or insight, but it would be nice if evaluations of kids could recognize their light, at risk of sounding too sappy. Adjusting to Mr. Book’s absence may make these appointments harder on you and Joey…you’re in my thoughts and prayers.

  5. I know this must seem so overwhelming and I wish Mr. Book was right there beside you all the way through it. I am so glad that Joey has you both in his life, in his corner, advocating for him every way you can. I will be anxious to hear more reports as they come. Love you, Susiebook!!

  6. I’m glad you went to that appointment and glad that you’re following up on the next. Knowledge really is helpful — and so is the support that can follow. He is loved and his needs are being attended to, which are both huge things. xo

  7. so hard, but I’m so glad you’re getting him checked out and that you have some good support.

    funny I should read this today, as I just applied to have baby Z checked out for some delays and her first eval will be a speech therapist in our home. hoping she cooperates. she’s only 18 months old so I don’t know how much they can test…

    wishing you all well!

  8. I know this is a scary path to go down, but we are all here with you in spirit and to listen. Hang in there. I hope you get some answers and that those answers lead to hlep.

  9. Sorry that you are facing these difficult questions and appointments, especially when Mr. Book is so many miles away. Reading your post felt like quite the flashback from the stuff I heard and went through with my now 13 year old son.

    A few thoughts… have you had his eyes checked? Nobody even had a clue that my son, “T” had any eyesight problems at all. It seems hard to believe that he had such poor eyesight and nobody suspected it at all for so long but I look back and think about the developmental delays, behaviors and personality type things that we’d been dealing with and now wonder if a lot of that may have been due to him living in such a blurry world. I’ll try to make a long story short… Nobody ever had a hint that he had any eye problems at all. He looked at books intently, he ran around happily without running into things but when he was three years old (almost four) I mentioned one day to his preschool teacher that I’d be picking him up early for an appointment and she told me that while I was there I should have them check his eyes. Totally took me by surprise!! I asked his pediatrician that day to check his eyes and T didn’t cooperate at all. So his pediatrician took a look at him, asked me a few questions and said that he seems just fine and have him looked at again at his next checkup (which would be in a year!!!) I don’t remember what happened but eventually something made me really think that perhaps the preschool teacher could be right and despite my pediatrician telling me how pointless it was, I basically refused to leave without a referral to a pediatric eye specialist. The specialist did a thorough check by dilating his eyes and some tests that can be very accurate even for a very young child. At the specialist we found out that his eyesight was nearly legally blind. I know that sounds incredibly hard to believe when we didn’t suspect it or figure it out until he was three but I guess he had just adapted well to his blurry world since that is all he’d ever known. Looking back I felt like it had explained some things… no wonder his social skills weren’t up to par… he couldn’t see people very well! No wonder he had zero attention span… how could he focus well do go along with what he was supposed to be doing when he can’t really see what is around him! Okay, I didn’t make that very short but I tried. Anyway, I know it sounds a little crazy because of course someone would know if he had such major eye problems but we live in the area of one of the top hospital and medical facilities in the country so the doctors are the best of the best and his pediatrician never suspected it and neither did we or anyone else but this one teacher.

    Another thought, has Joey either now or in the past gotten frequent ear infections or frequently had fluid in his ears without there actually being an ear infection? That causes a whole mess of problems with speech.

    Those are two things that I would have done anything to have figured out earlier because I think it explains a lot including the types of things you are seeing in Joey or being told by doctors.

    We also went through the depressive and extreme emotions from as early as I can remember. I was the same way as a little girl and so I insisted early on to have him seen by psychologists and such since having it untreated for so long in myself led to a lot of problems. Doctors tried to work with him on learning how to better handle emotions but eventually we put him on Prozac around the age of 11. Night and day difference after starting the medication, thankfully because it’s hard as a mom to see your child cry so much or seem depressed and to feel like nothing is really helping very much. Unfortunately the apple hadn’t fallen far from the tree and his emotional side was easily tracked back to me being the exact same way.
    Sorry, I went on and on and maybe this stuff doesn’t pertain to you at all but the situation sounds similar to T and this is the stuff that we later figured out had all contributed to why we were seeing the types of things that you are also seeing. Having said all that, he is also an amazingly great young man with so many talents and the emotional side to him has also had benefits, such as him being extremely caring of others and being so sensitive to others feelings that he seems to always have it figured out when something is bothering someone and he has the world’s best input. He is so perceptive and has insight on things that just blow me away. His rambunctiousness led to the ADHD label but the rambunctiousness meant he has never been a couch potato and he experienced a lot in life in his 13 years since he moves quickly and ends up seeing and experiences a lot since he lives his life in fast forward. 🙂 We all have our quirks. Our six year old daughter is the exact opposite in so many ways. Well, still emotional but not a single delay, actually quite the opposite, and she just seems to excel so easily in everything she does without a problem. So different than her brother. On one hand I feel bad that she has it so “easy” compared to T and T gets stuck seeing his sister breeze through life while he struggles and struggles. But on the other hand I’m thankful that we don’t have to go on such a wild roller-coaster with her. Although she is a girl and that girl cattiness and drama is just as wild of a rollercoaster as anything we’ve been through with T!! 🙂

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