Kate Says

One other thing (and I hope you don’t mind the unsolicited advice): Even while you are in the assessment process, talk to a developmental pediatrician (or another autism specialist) about the pros and cons of home schooling vs. preschool. On the one hand, home schooling affords Joey to have tons of individual attention and help from you. On the other hand, since people with autism often struggle the most with social skills, he might really benefit from consistent, regular interactions with peers. Also, if you work on social skills with Joey at home (and I would recommend it; there are many wonderful kids’ books and activities designed for this purpose), a preschool environment would enable him to practice the skills he is learning. Too, the teachers could give you regular, objective feedback about how he is doing, and then you could use this feedback to identify and target specific skills or areas where he needs extra help.

One of the things that I’m grieving (current stage: anger, mostly, with some bargaining and a smidge of depression) is not being able to parent the way that I had wanted. (For the purposes of this entry, I am going to assume that Joey is, in fact, autistic: the other day, I was listening to an audiobook memoir of parenting an autistic son, and when she ran through the diagnostic criteria, I just started banging my head against the refrigerator. If those are still the criteria, yeah, he’s totally autistic.) I’ve been reading about autism with just about all of my free time recently, and it seems clear that it will be best for Joey if he is in a hugely structured environment, with ABA therapy and me reinforcing that all the time and speech and occupational therapies and probably a preschool at some point. I can’t do the “Let’s read good books and expose you to information and groovy experiences and let you learn” because he’s not going to just soak stuff up. We’re going to have to stuff him with skills like a turkey, apparently. And of course I’m on board to make that 180, because I want him to do well and be happy and able—but it pisses me off a little, in a self-pitying and selfish way, that I can’t give him the free-range childhood that I wanted him to have.

What does this mean for Kit? Obviously I’ll parent them differently, even more differently than the inevitable “two different children with different needs” differences that I had anticipated, and whoa, I think if I stuff one more “different” into this sentence, I will win some kind of award. When I was pregnant with Joey, I decided that if he was born with special needs, I wouldn’t have any more kids; I have heard from siblings of special-needs people how hard that role can be. And here we are, and I can’t for a minute regret my Kit, because he is a joy and absolutely essential now that he’s here. But how do I do this? Good thing that I’ve got some time to figure this out. Clearly I’m going to need to make time alone with each of them, but that was already true.

I got a couple of things to go in the boys’ Easter basket: a board book, a thunder tube, some bubbles. In a day or two, we’ll pick up some candy. Time just keeps marching alone, even with me staggered.

8 thoughts on “Kate Says

  1. “One of the things that I’m grieving (current stage: anger, mostly, with some bargaining and a smidge of depression) is not being able to parent the way that I had wanted.”

    Give yourself a break. Seriously. You are far too hard on yourself. Because I believe that I can speak for the vast majority of parents out there, regardless of whether their children have special needs or not, that NONE of us are parenting the way we wanted. Or rather, thought we wanted. None of us.

    It does not matter how much knowledge you have before you become a parent. It does not matter if you had experience in caring for other people’s children. It does not matter how many books you read or parenting classes you attended or theories you developed. For instance, I was a trained/certified nanny who became a children’s librarian and had a ton of child development classes under my belt. DID NOT MATTER. Becoming a parent kicks you in the ass and strips away your belief in yourself.

    What I realized, after becoming a parent, was that all my learned theories and methods and beliefs mattered not one iota. I had to step away from them and stop imaging myself as the perfect parent to a perfect child. Because that is what everyone imagines before becoming a parent. But there are no perfect parents and there are no perfect children.

    Instead, I left all my fantasies behind and focused not on what I wanted or even what I needed, but on what my child needed. Because that is all that matters.

    And Joey will be alright. Because you and Mr. Book are his parents and you are good parents. And you will find a way to give him what he needs. Although you will do some stumbling. Just as we all do. Because that is what parenting is.

  2. Love you, Susie. Remember (and I know you know this!) that treating your boys fairly means giving them what they need, not giving them each exactly the same whatever as the other gets. As they get older and older, whatever their needs, that’s just going to get more true. Having the ground rules there from the beginning (from Kit’s perspective) might even make that easier.

    Mara had/has a lot of problems with social skills for different reasons and a good preschool has been an amazing for her, but nothing has been better than having (foster) siblings who live with her. I assume that Joey would be eligible for Head Start, and you might start looking around at resources like that in your community.

  3. Yes, what Thorn said. I have only one child, and her medical problems meant that within a month of arriving at home she was in the hospital having surgery to place a feeding tube–and there went all my visions of homemade organic babyfood, replaced with the actual life of feeding exercises with cheetohs and ketchup. Totally not what I expected, and when I look back on some of what we did at the time, I think “how did we do that?” But you will find, just one day at a time, one step at a time, the right combination of support and help for both you and your wonderful boys.

  4. Hi, Susie,
    This sounds like such a hard adjustment, all the more so with Mr. Book in another city. I hope you have some in-person folks in the area who can nurture you, and that you’re reaching out to them as much as you can. I’m sorry if that sounds like just another darn thing to put on your growing list. You deserve some help, comfort, and light-heartedness in your life right now, and I hope you’re calling in favors for people to help you get it.

  5. Thorn is wise.

    Also, on the thought of siblings and special needs — when I taught pre-school I attended a training where the presenter noted in her experience children with Autism who have siblings often gained more/better social skills than only children as they had a peer at home for daily real world experience in addition to school/therapy/etc. My experience over the four years I taught bore that out, but as my sample size was less than a dozen a grain of salt or two is in order.

    What I do know for sure is that in my circle of friends four have siblings with special needs and all of them speak with such love and positivity about the experience. You are absolutely right to mourn that you and your family won’t necessarily have the life you planned, but it can still be an awesome life for all of you.

  6. i’ve been wanting to comment but i’m crazy-pressed-for-time right now. hoping to add more later, but i have a kid with special needs (initially they thought he was on the spectrum but now it seems like he has severe adhd, which can actually present as very similar in some ways), and i totally understand what you are going through. (1) it is normal to mourn, you are missing something you thought you would have, but it also will be amazing, because joey is amazing, just as he is. (2) you are a fabulous parent. duh. (3) because of my kid, i know TONS of parents with kids on the autism spectrum, and early intervention has really done wonders for so many of the kids i know. it is so good that you are catching this now, it really is. (4) his sister and preschool (special needs preschool) have done wonders for my kid.

    much internet love to you and to your family. i so wish you had mr book there with you.

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