Therapy burnout

When Avery was about two, I noticed a decrease in his enthusiasm for therapies. At first, I chalked it up to the “terrible twos,” though this explanation didn’t seem quite right. Then a few weeks later, something happened that let me know we were dealing with more than toddler negativity.

I write about it here for this week’s OpEd at Literary Mama.


17 thoughts on “Therapy burnout

  1. It’s so true! We need to be thinking about the _family_, too, as the family supports the child, and also the mother. Family-centered therapy is such an important concept. Sometimes Carter comes with us to PT, and its terrific. He learns ways to support Avery, and feels a part of it all. But we were not encouraged to bring him to some of the other sorts of therapies, which I thought was sad. I mean, here’s a teaching moment if there ever was one, and it was just being ignored. Ah well. I’m learning as I go!

  2. My two cents…. Therapy is for the family, not just for the child. When it stops working for the family, it’s time to move on, either from that therapist or from that treatment in general. It’s so hard to turn your instincts over to another person, so hard to remember that the mother’s instincts are the strongest. I wish therapists would support families in that way, the Total Family way. But sometimes “family-based therapy” turns right back into the therapist telling the family what to do and when to do it, and the family either following through or not, and feeling guilty all the while. As if MORE were BETTER.

    Thank you, Jennifer, for a great piece.

  3. Jennifer,

    I always say that one of the toughest things about finding out that your little one has T21 is not the T21 itself — its the total upsidedown about face your personal life takes. Suddenly, not only do you have a newborn, who may already have some medical problems, but you’ve got people who are in your home, helping you apply for funding, and getting therapies started, etc.

    You are talking about your finances with strangers, having to keep your house cleaned because it always seems like “therapy day”, and to top that all off, you feel horrible guilty for not “working with” your child while you clean that house!

    I used to feel bad when I went to the grocery store, convinced that my husband was letting my baby just lay on a blanket and play, with no direction…imagine the horror!!!

    This realization that you must tailor the program to Avery’s needs will serve you well as you enter the school system. Like you said, those before us fought hard for inclusion, sometimes at all costs, and sometimes, that might not be the best choice for a specific child.

    Its very hard to feel like you are taking a step back on this advocacy trail, even when you know you are making the right choices for your child.

    Great topic!!!


  4. Wow Jennifer–What a great article…so very true! I have felt the same way many, many times. Thank you for once again sharing your words that put things into perspective and let the rest of us know that we are not alone.

  5. That was a great essay.

    I think it’s really interesting how just about everyone questions the amount of EI they’re doing. Too much? Not enough? It’s like the DS-parent equivalent of bra sizes — you think everyone else has the right one, and yours is weird.

    I’m glad you did what you thought was right. I’m believing in instincts more and more, lately.

  6. Absolutely! And the choice to raise happy balanced children who are learning – at whatever level. I was chatting to another Mum on the weekend who has just been having a difficult week where part of what she was doing was having her son undergo psychometric testing because according to our law he HAS to go to school next year – but after dealing with so many things (he has DS) as well as having had lukemia the little fellow just isn’t ready. Like all mother’s she wants him to be in an environment where he will learn and where his self esteem will not be destroyed. She wants his spirit to thrive not be crushed. It isn’t always easy to ‘choose’ the best option.

  7. I think the key is _choice_. To do therapies because it’s a good choice, not an obligation for obligation’s sake. I remember feeling very guilty–not taking advantage of all the incredible services the previous generations of parents fought so hard to ensure. But to do something that wasn’t right for my child, because I felt indepted, was wrong. I still feel indepted, but I hope to repay it in other ways.

    The challenge now, I believe, is in making good choices. That’s the legacy we will leave the next generation of parents, perhaps.

  8. Good for you, Jennifer! I am in constant turmoil over whether we are doing enough for Joe versus allowing him to go at his own pace. Joe has preschool 5 days a week (with tons of therapy) and private ST and hippotherapy (which is probably the only thing that he enjoys and seems to help). Much of my time is spent arguing with therapists about appropriate measurements of progress and advancement. Oh, how I dread the IEPs! Plus, I am sure that all of his “team” think that I am a crazy person. It is so tough. I want to give my children all of the help that they need but not at the risk of limiting who they are or recognizing what is unique and valuable about them. I really think that Joe is teaching me to be a better mother, professor, neighbor, and person. Now where is that on the evaluation chart?

  9. Ah yes, the personal agenda…it’s SO hard to let go of. I am trying, I am trying. And my experience with Avery has been especially helpful with my other children. It translates to their lives, too–I look more closely at what they really need, versus what I think they _should_ need…

    It’s all very tricky, I admit. Thank you for the dialog about it!

  10. Good for you, Jennifer, for being able to really listen to Avery. I came at the thing almost backwards from you, in that I refused all therapy until Eric was more than a year old, and even then it was on my terms. I hated the encroachment into our personal spaces and lives, and Eric hated therapy. When we moved to Colorado when he was 18 month old, we were introduced to different therapists with different agendas, who knew not to push him. Then therapy became fun, something he looked forward to, because he knew instinctively that these people did not judge or compare him and instead were there to help him simply be more Eric than he was. The strides he made in the year since then have been amazing. Now he is three and EI is over; he attends preschool four days a week, and while I actively opposed this for the longest time, in the end I saw it was what he needed, whether it met my own criteria or not. The hardest part of parenting Eric has been learning to drop my own agenda and instead listen to Eric’s.

    I’ll bet Avery is LOVING this change, and you are too.

  11. It is hard knowing how much is too much and what is enough or just the right amount. Espeially when when you are torn between th ‘experts’ saying it is all happening in the firt year, and if you don’t do it now, your child may never get it… I am thinking about it a lot…

    Thanks for the well wishes, I am FINALLY back home with my guys 🙂

  12. Jennifer you are an amazing mother. You are reading Avery’s signs. You are supporting him in what he needs at the time. You are showing a balance in your lifestyle. I congratulate you.

  13. Thank you for your comment, Michelle, it’s such an important topic, and I don’t think we can talk about it too much. It’s so hard to know what’s the right balance, and even then, the balance shifts and changes as children grow.

    I hope that my OpEd doesn’t come across as anti-therapy; I truly am grateful for all the people in Avery’s life.

  14. Brought tears to my eyes too!

    I do think EI has it’s good points, and the services are definitely needed – but it also has the chance to become all consuming and you don’t know where to draw the line. We want our kids to just BE kids and not to worry about all the extra stuff, yet the other side of us hears how great EI is and how far kids come nowadays. We want to do what’s best for our kids and offer them every opportunity to succeed, so we feel guilty if we don’t do something – or wonder if we’re not doing enough.

    Kayla had PT/ST/OT and although she didn’t have it as often as some people I know, she had it more than others I know of. At times it was overwhelming – especially when you start at 5 wks old. As the months went on and on I found myself dreading when it was a therapy day and we would have someone over; I almost resented the invastion into our home. I wondered about stopping it or cutting back, but would feel guilty about that because who were they there for – me, or Kayla? Would I be doing her a disservice?

    Sorry, didn’t mean to take up your comment space!

  15. “I am giving my son his childhood back, and if it means we drop right out of the race, so be it.”

    …oh, Jennifer, this brings tears to my eyes. Aaron has preschool twice a week, plus library program and speech class and individual therapist appointments. It is too much.

    It is dawning on me that we should be following Natalie Merchant’s words from Wonder:
    o, I believe
    fate smiled and destiny
    laughed as she came to my cradle
    know this child will be able
    laughed as she came to my mother
    know this child will not suffer
    laughed as my body she lifted
    know this child will be gifted
    with love, with patience and with faith
    she’ll make her way

    All Avery and Aaron need are love, patience and faith…

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