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Gandhi with a Side of Rage

Sitting in the counselor’s office recently with my 13-year-old son (whom I love with all of my heart) I said, “We can deal with anything except the rages. And his refusal to do anything he doesn’t want to. If he decides he isn’t going to do something, there is no way to make him. If he doesn’t rage, he will lie on the floor and refuse to move. Sometimes for hours.”

Ah…a peaceful protest? Like that guy…what was his name?”

“Gandhi?”

“Yes, like Gandhi!”

“Um..more like Gandhi with a side of rage”. 

I left the office that day with the will to fight more. Advocating for my children is a full-time job. Some days I feel like I just can’t do it anymore. I am ready to give up on phone calls and letters and research. 

I have a friend who happens to be a psychologist (isn’t that handy?) She has never met my son, but we spent thirty minutes on the phone recently and we went over his history, his diagnosis and the craziness I’ve been dealing with the past couple of years. Her best advice to me? Give up on the idea of “counseling”. Talk therapy is never going work with my son. Communication is very difficult for him and he doesn’t do it well. In tests he consistently scores lowest in verbal skills. 

So there you have it. I repeated my conversation to the counselor who agreed. So we parted ways amicably. Monday mornings now belong to me again. 

Last night I got a phone call from the psychologist at Children’s which I can only describe as We Have a Ticked Off Parent and We Better Do Some Damage Control. NINE WEEKS ago my son had an eval with a SLP…I was told the results would be sent to me within two weeks. I still haven’t seen them.  When I was in on March 1 (six weeks after the speech evaluation) the SLP hadn’t even sent the results to the psychologist yet.

The psychologist last night told me she (now) had the results from the SLP. She told me they were going to try to work more efficiently from here on out and hopefully make more progress. That shouldn’t be too hard…given the fact that we’ve made almost no “progress” in the last 17 months. She said when I go in later this month she is going to do “some testing” though I’m pretty sure no autism eval. She is going to try to set me up with “services”…She said his test results so far indicate he could benefit from ABA therapy…never mind that the waiting lists are nearly endless for kids with autism…never mind kids who don’t have that diagnosis. And never mind that the insurance company is not likely to pay for those services without an autism diagnosis. 

She plans to send him to a psychiatrist to confirm (or not) a bipolar diagnosis. And he’s on a waiting list for a developmental psychologist. 

So where to now? My Monday mornings have now been opened up…I plan to contact a local therapist who does work with kids and animals. If it seems like a good fit I will get him on the waiting list and then work getting the insurance companies to pay for it. I plan to complete his service dog application. And I plan to make it through another day with enough energy to get up and do it again the next day.

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21 Comments

  1. sonja snowflake

    Every time you blog about the failures of the medical system in the US I am completely shocked and pretty much lost for words.
    Sure, mistakes happen in my country as well and you’ll have to wait for some time to get special evaluations – but there’s no way you’d have to wait months and even years when needing such important tests and suitable therapies according to the results!
    This is absolutely shocking!!

    I really, really hope you can finally make it to the right people!!!

    • Sunny

      I could be wrong. But I believe the issue here is due to their son having state insurance.

      Is it not possible to add him to your family plan? Or self pay? Most people I know can get an evil without much issue. My apologies if I have the wrong idea.

  2. Holly

    Question–and please don’t take this the wrong way because you are an amazing parent and I have learned a lot from you–but do you worry about the fact that stories of your special needs kids’ struggles are linked with their names and pictures and the internet never forgets? Future friends, co-workers, employers, maybe even insurance companies or who knows what other entities could have easy access to this info and they may not be as caring or supportive as your family is. Do the kids fully understand the ramifications of all this pysch info being “out there”? While Apollo’s medical issues are as visible, it doesn’t seem like society stigmatizes medical issues like it does emotional and behavioral ones, regardless of the fact that the latter were caused by prenatal behaviors and the kids were the victims. Prior to reading your blog, I didn’t realize how devastating that history could be and I think it’s important that you are educating readers about the lifelong effects of prenatal alcohol/drug abuse. I applaud your love, bravery and determination in sharing these struggles, but admit that I cringe when reading personalized accounts where the kids don’t have the protection of anonymity.

    • bakersdozenandapolloxiv

      I appreciate your input. Usually when I blog about something sensitive like this I leave out names and photos. You have just reminded me of this and I have edited the post.

      I love that you brought up the issue of physical needs not being stigmatized while FASD and mental illness is. This is something I have given a lot of thought to. I wouldn’t mention alcohol exposure or FASD on the blog or in real life for years. As if I could somehow minimize or make the effects disappear by ignoring them. My stance changed as he got older. It is helpful to know why he acts the way he acts and to give name to it.

  3. Melpub

    I am sure you are doing the right thing–Holly, the problem seems to me not that her son is exposed in some bad way, but that he has been forgotten, that the system wishes to forget him because it does not know what to do with him. Any insurance company likes an easy, predictable diagnosis and a pill with which to fix the problem. Many illnesses and conditions have no easy fixes, and if the therapist knows he or she is getting a tiny reimbursement (and if he or she is not a saint) they’ll just palm you off with the first thing that comes to mine and hustle you out. The service dog idea sounds great, and I still recommend banging on the door of some hotshot of Oliver Sacks’s caliber–there must be someone who trained with him who is good. When I think how exhausting (and filled with rage) a normal thirteen-year-old boy can be, I stagger with the weight of just imagining what it’s like to love and try to help her son.

    • bakersdozenandapolloxiv

      Yes, I share in part to show people how broken the system is. However, I do generally leave names and photos out of posts like this so they are not so easily searchable. Holly’s comment was a good reminder to me and I edited the post because I believe that is the wiser choice.

  4. Lisa

    I absolutely agree with the psychologist about talk therapy being ineffective for your son!! Long ago I read an article that stated talk therapy was ineffective for kids with FASD, as well as other issues where communication was a challenge. My son is currently being “mandated” to receive talk therapy by our community mental health department because he receives psychiatric services there and he hasn’t improved significantly in the past 8 years. We’ve tried this several times and he simply refuses to speak to the counselor about any of his issues. He’ll sit there and complain about a teacher or student at school the whole time (this went on for over a year until this mama said ENOUGH!). His newest therapist looks like he just graduated from high school – although I’m sure he’s at least 22 and a college grad. We were told he could no longer be seen for medication management with his psychiatrist of 8 years if he didn’t start with another therapist immediately. We stalled for awhile (it works for them so why not?) and then started seeing a therapist in Jan. He saw her 3 times and I had just made a comment to her about how hard it is to start over and over with new workers, counselors, therapists and wondering if I was being clear about his issues and she said, “Oh, I’m sorry to tell you this, but I just took another position and next week will be our last session” – augh!! So, he’s seen the new guy once so far and I am so resentful that I have to take him every week when I KNOW this isn’t effective!!! My son is now 17 and I feel like we have such similar experiences. The closest we ever got to a autism evaluation was when a former counselor referred us to a dr. (local even – amazing!) who was an “expert” on autism. We went for the consult, she ordered some tests, including an eeg – which was the longest eeg I’ve ever heard of (over an hour including lights flashing and noises – strange to watch). The day we were scheduled to go in for the test results, I was called by this dr.’s office manager and told that I had not received the correct referral before coming in initially and insurance wasn’t going to pay for anything up to that point. I could come in and get the results only if I paid for the initial consult ($385) and paid for that days appt in advance ($250). Well sure, let me just write you a check!!! We didn’t keep the appt even though I desperately wanted those results. I’ve fought with insurance to pay it for 2 years so far. One thing the expert said was that if he was on the spectrum, someone would have noticed it by then (he was 14 at the time) – I’m not so sure that’s true considering what we experienced and what I’m hearing from others walking the same path.

    Infuriating!!!!

    • bakersdozenandapolloxiv

      Your whole story makes me want to scream. Yes, my son isn’t receiving drugs so he isn’t required to go for “therapy”. At our last meeting the therapist said, “play therapy is for kids who are overcoming horrific trauma…your son doesn’t have the two overcome”. We are constantly struggling to get our son’s state insurance (through Adoption Support) to cover his mental health needs. Our contract says they will. Their answer? To send him to the local free and low-cost clinics for talk therapy. I am so sick of fighting with them…

  5. mkle

    I’m a long time reader of your blog and love your energy and optimism… I’m also the parent (adoptive) of two kids with FASD.
    My kids are a little older than yours but my son struggled with many of the things your son seems to be dealing with (rages, mood swings, impossible to motivate, etc.). I spent 10 years working in the FASD community… facilitating parent support groups, training educators, case workers, foster parents, etc about FASD.
    I think you are right to give up “talk therapy”, usually our kids just don’t have the insight for it and it can sometimes even make things worse. (With their extreme suggestibility “seeds” can inadvertently be planted which can lead to behaviors they never would have thought of on their own.) I’m not sure ABA is the way to go either, given the issues our kids can have consistently understanding cause and effect… You probably have already done this, but researching ABA with kids with FASD before jumping in would probably good.
    My son also scored high on autism screenings, although not quite high enough for a dx… I really do get how incredibly hard it is… especially when raising both typical kids and kids with FASD. The intervention that ultimately helped the most (probably changed our lives!) was reading and implementing the ideas in Diane Malbin’s books. My favorite was her “Five Part Series for Parens and Professionals”… it gave me real, and effective, tools for managing the behavioral issues we were dealing with and made life with our son doable and safe. The other piece to the puzzle, for us, was treating my son’s mental illness (so common with FASD)…it took a lot of patience and med trials but we eventually found the right medications to treat his mental illness.
    My son is 23 now… the violence (extreme in our home for years) is a thing of the past, he’s obviously delayed but graduated high school (homeschool) and has a volunteer job in town. He’s happy and feels good about himself, and is well known and well liked in our community.

    Your son will get there too… I know MANY kids with FASD and their hearts are so big… with good support and understanding of their disability they grow up to be lovely people… Not typical people, but wonderful in their own way. Check out Diane Malbin if you haven’t already and if you want to read it, but can’t find her “5 Part Series”, I’ll lend you mine…Just email and let me know and I’ll mail it up.

    Hang in there…

    Maura

  6. Melody

    Your doing a good job, Mama! Keep fighting, keep advocating, keep doing what you know is best for your child. And when you have a tiny breather from all the craziness…COFFEE AND CHOCOLATE!!!!!!!! Hugs to you!!

  7. deshelestraci

    We have a therapy center in TN called the Papillion Center. They do equine therapy with FASD kids. Not sure if there is anything like that in WA. I get it though, just one more place to travel to.

  8. the Toddler Wrangler

    “Advocating for my children is a full-time job. Some days I feel like I just can’t do it anymore. I am ready to give up on phone calls and letters and research.”

    Oh, Renee. I wish I had some magic words or deep insights to encourage you. All I’ve got is a deep sigh of solidarity. For what it’s worth, I’ve been reading this blog for years (I’m terrible at actually commenting), well before Apollo’s birth, well before I got married. Stories of your family helped me realize that I did want a big family and I wanted to adopt someday. I got married in 2013, pregnant on the honeymoon, pregnant again while still nursing firstborn, and we adopted two (with special needs) last year, flying home just two months before #4 was born. And now I AM one of those (you!) ladies I’d hoped to be someday, and it’s beautiful and frustrating and a thousand things all together. I’m still waiting to find out whether I will EVER feel like I know what I’m doing as a parent. And beating my head against the wall with paperwork, bureaucracies, the whole labyrinth, trying to patchwork together the funds for some diagnoses and therapies while I wait. (In between laundry and 20+ diapers per day of course!) The only thing that keeps me going some days is the certainty that I am exactly where God wants me to be, doing exactly what He has planned for my life right now. People ask me how I am doing and I sometimes respond that this was all God’s crazy idea and so He is going to have to figure it all out!

    Melody has it right — COFFEE AND CHOCOLATE!!! I don’t wait for a breather though. I ingest copious amounts of both right in the midst of the craziness. πŸ˜‰

    • bakersdozenandapolloxiv

      Thank you for your wonderful comment. I am happy to know I have been of some encouragement to you. I don’t have the energy to fight every day, but I fight as hard as I can on the days that I do. I am sitting in Starbucks sipping coffee right now πŸ™‚

  9. Polly

    I was wondering whether you had ever heard of “play therapy”, I believe that is what it is called; I personally don’t know much about it but I have heard it highly recommended, especially since it is not based on verbal communication, something many kids don’t naturally expressive themselves with anyway. This therapy uses toys and a sandbox to help the kids tell their stories, and apparently feels safer and less invasive to the kid.

    I don’t know how widely available this is (or where you live), the place I know of is in Port Townsend, WA, Jumping Mouse children’s therapy. They have a website that explains the philosophy. I think they may provide finicial assistance if needed? Not sure about that…

    Your situation sounds quite frustrating, I hope it gets better. Good job keeping on going!

    • bakersdozenandapolloxiv

      The counselor we just parted ways with did play therapy as did his psychologist. He neither talks to them, nor has displayed any ability to act out his stories. The counselor we just left said, “play therapy is helpful for kids overcoming trauma…your son doesn’t have trauma to overcome”.

  10. simonanderin

    The dog thing got me thinking. I have a friend who breeds labradors here in Australia. She has provided one to a family in the last 12 months for their son who is on the spectrum. It has been amazing for his anxiety in particular. He used to not be able to go to bed or shower or go outside on his own. Now he is confident and happy with all these things with his dog. One of the things she said was that labs are great because they know how to interact with more than one member of the family, and will behave differently for different family members. They know which likes to rumble, and which just wants to sit and cuddle, and they are really perceptive with moods, etc. The one she sent wasn’t trained as a companion animal – it was just a really nice lab from a breeder. Just wanted to share her story with you in case it helps at all.

    Oh, and I’m not sure if you’ve seen a dev psych before but they can be very good.

    • bakersdozenandapolloxiv

      I think he’s on the waiting list for a developmental psych. Yes, the dog for my son would be a companion and help with what they call “social lubrication” to make it easier for him to adjust to new situations and help with anxiety.The advantage to a service dog is he can legally take him anywhere, unlike just a well-trained dog.

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