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Pediatric 'Disorders' have this mama in chaos

Monroe_quiet
"We're going with Disruptive Behavior Disorder," says the pediatric psychologist. She is young: the sort of young that goes with lots of experience working with parents and small children, seriously impressive degrees, knowledge, decisiveness. In fact, looking at her resume later, I decide she may be exactly my age. But her manner, her aspect, young.

The patient is my not-quite-three-year-old son, Monroe; I'd started this quest to get him diagnosed by a storied medical organization up on this hill of inquiry six months ago; for what? I ask myself in these spare moments after receiving the diagnosis. What did I expect? All pediatric psychologists and special education teams have for my children is a (damning) name for the symptoms I'm reporting to them. All they have is a knowledge -- from this brief interview, these questionnaires with acronyms and insufficient answer choices (there's no "it's complicated," or, "are you kidding me?" or, "but I love this kid with every inch of me" as options) -- that I've given them, that they've observed with the shapes and the little plastic bolt-and-nut. He can sort the shapes, he can screw the screw, he can tell you he's a boy and I'm his mama. He can say "I loff you!" and call blue "boo" and ask where "muffin" has gone ("my friend," I translate after a minute, a little boy only 11 months, Monroe was so sweet with him). He eats kale and garbanzo beans and picks raspberries right off the bush. He hits me, bites his brother so hard it bruises, stomps, throws things, breaks them, screams! screams! when he's angry. He's angry a lot, far more than is right.

What I wanted, I decide after much questioning myself, was a reason, if only a guess! a supposition!, something to look back to and say, "ahh," sorrowfully, to avoid next time, to purge from my life, from which to warn others away. I wanted to know how to wean this child so I can sleep better, manage better. I wanted a solution. Not a thoroughly bad name for what I already know.

She prescribes another evaluation in two years -- so they can, if in the fullness of time he has lived up to his early promise, give him the diagnoses of ADHD and Oppositional Defiant Disorder, when he's old enough for those names-of-behaviors, according to DSM-IV -- and respite for me. Through preschool. Really? And, no.

I try to say some of this to her; I've already told her colleague, whose name I don't get and whose resume I can't Google, how I don't want preschool. How I just want to know if there's anything else I should do. How I'm not going to put him in public kindergarten as he is, now, only to get him kicked out a month, a week, a day later. Sent to alternative schools where everyone kicks, bites, screams. I've done that once. No, no, no.

I ask her, why? Why would I put this child in preschool? What good is it? What are the benefits compared to keeping him at home? I explain how I do not want to be the parent in a community preschool with lots of first-time parents whose child is the biter, of whom other parents look at with a mixture of fear and thank-god-that's-not-me. I was told once that other parents didn't want to send their kids to preschool with my child. No more. And the other option? Albertina Kerr, a truly beneficial choice for many parents, but the classrooms are typically filled with little ones whose smarts are more on par with their social development. Monroe's a charming, frightening dichotomy (like his brothers): scary-smart, utterly without impulse control. She asserted herself that this would be difficult. He would not be "challenged."

After all of this, I do not really expect her to understand me, but still. I want something: an acknowledgment, perhaps, that I am indeed right. That all these names are insulting and there is no answer and everything I have done to get to this point was a big waste of my energy and time and (thankfully little) expense. That pediatric psychology does not help children with these names. I say, "this is a name for symptoms," I say, "I know him best, I love him best," I say, "he's better off at home, isn't he?" and explain to her how it is far more stressful to get a child ready for a preschool program about which you have doubts, and take him there, and wait by the phone, worrying, and go to pick him up, wondering what the teacher will be saying, today, than not to do any of this. And I wait for her to tell me a reason otherwise.

"But you need respite!" she says, and in the end I have to say "thank you" and "goodbye" and decide that no, I do not need respite. I will have this peace in my heart and in my soul knowing that what I am doing is what is best for him and that I know this child as well as anyone can, and better. "How well do you know this child?" one of the forms asks. Better, better than all that, I should have answered. Best.

There was no question on the forms for, "how much do you love this child?", nor, "how much of yourself are you willing to give?"

If you are struggling with a child whose symptoms need not be described by a pediatric Disorder, I will tell you what it is I am doing. I am trying to model calm. And I am doing so by reacting to his anger with as much patience and love as I can. I make things safe; running to hold him, restrict him, from hitting or biting or throwing things when I hear him begin to scream; talking as calmly as I can and urging he and his brothers to work for solutions on their own. That is the mantra they hear from me most often, "find a solution to your problem, calmly, sweetie, find a solution." And when they cannot I try to talk them through it, sometimes I must first wait for the screams to end and hold him, holding back tears at times, or laughter at others (because still, you must laugh!), sweeping all the breakable and destructive things off a table, out of reach. Waiting, taking breaths, telling him to take breaths, praying. I try distraction; even now, both little boys exclaim out the window, on the bike at white trucks, red cars, brown vans, monster trucks!, because this is what am I doing when all else fails. When I am angry, I calm myself as well and as fast as possible; I apologize, I set things right physically and emotionally, as quickly as I can.

Last night: last night, he was angry at me, I did not want to breastfeed him any more, tired, tired, tired. He swept the clock radio off the table; he threw a toy he'd left there the day before. In a minute, he calmed, and he scrambled out of bed and picked up the clock, then got back to bed and thought again, scrambled for the toy. He set it there, on the table, looking at me and I said, "thank you, thank you!" and in my eyes, there were tears.

[Update, July 1: I spoke to Monroe's doctor again, today; she is an urbanMama reader, and came across this post. Through her comments, I could see she felt it was critical of her. I understand how she could think that; and I did not intend to criticize her. I do intend to criticize the limits of pediatric psychology for very young children. I do intend to criticize the general inability of the medical establishment to give answers that are useful -- for prevention, for treatment. And for me, the answers that do help many mothers aren't very helpful. And one last thing: she told me she is a mother, of two. She understands, better than I realized, and for that I am also grateful.]

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Sarah, you write so beautifully about your boys and your struggles. When I read your words, I want to just pull you in my lap, stroke your hair, and tell you it is all going to be okay because you love them so much. You give us all such a gift by sharing your experience. I want you to know that your sharing has been important to me and I thank you.

I am a clinical social worker by training, and have been that young professional of which you speak, sharing everything I know from my learning but not having the life experience to round it out. I am now a mother and approach my work so differently. I don't mean that to say my work before wasn't valid, it's just that now I don't have the gap between my knowledge and my experience I had before. Before being a mother, I would have advised those same things, services, labels, respite. My wisdom now tells me that those are indeed one approach, but not the only one.

Your search for answers and explanations will only get you so far, as you have already experienced. You have to combine those with your instincts and your other areas of knowledge. This is a slow process and no one step is going to be the answer for what is unfolding and revealing itself differently every day. You are right, you know that child best. Don't let go of that. Take what people have to offer, use what you can, and kindly leave the rest behind. But grieve for the fact that this makes your life with him different than you imagined it would be. And it makes you have to approach parenting and the world differently than others might. You have to be more thoughtful about what you do, how you do it, because you have a child that doesn't respond to things like other children do. Surround yourself with people who appreciate that purposefulness, not those who judge it. There's your respite. Respite isn't just about being away from the child, it's about being where you are able to relax and just do what you need to do.

Anyway, sorry for the long post here. I just wanted you to know how you have touched me, and to offer a few viewpoints for you. Thank you for sharing with us.

thanks mom22... no need to apologize for the long post. it's appreciated, all of it.

We went through a lot of this with my son, who has Asperger's. Some people suggested oppositional defiance disorder and other things like that when he was 3/4 but he's on the spectrum. Some of the really HF kids don't look typical for ASD at this age. In any case, I do know someone whose child went to the PPS/Kerr program (KEIP?) that was basically an EI class for kids who had a lot of additional problems with aggression or behaviors, and they loved it. Their child is off the chart smart/gifted and it ended up being a really great thing for them. I know another parent whose child also attended and they loved it too. One child is in gen ed now, the other still in special ed. Is the Kerr program you mentioned the same thing?

Anyway I always read your posts and totally know what you're going through. My son is the same age as your older son now and just finishing 2nd grade. We still have issues but he's doing much better. But I totally get what your situation is like down to the scorn from other parents! Hang in there!

Sarah - your writing is beautiful and touched me deeply. You know your child so very well and you do an amazing job of parenting under difficult circumstances, to put it lightly. I hope that writing about what you feel and think helps you be the mom you want to be for your boys...

Thanks for sharing your and your son's situation. What an agonizing one. My kids are not (so far) in any dsm category. However my best friend since childhood has a son with Oppositional Defiance, Anxiety, and other yet to be diagnosed issues. They cannot put their finger on it, and say it may take a couple years to properly diagnose. But it is extremely painful for her, and has been for years (he is 8). She has had no support from family or friends who tell her he's just being a boy and she's over-reacting, even though he's been doing things such as telling her he wants to kill her and drawing pictures of him killing her since he was 4. Finally she got her husband and family to pay attention a little when she was so worn out that an aunt took pity on her and sent him to a highly regarded specialist who told them this is a serious situation and not a normal one, and that as he got older and stronger without intervention she could be at risk. They have been working different therapy methods for the last year and a half and are slowly making progress. My heard ached (and still does) for her, as she has not been able to bond with her child, and may never be able to, and it is confusing for her emotions.

Because she always had everyone shutting her down, she didn't get her son into an evaluation for quite a while. She says he could have been helped much more had this process started when he was 2,3, or 4 and was clearly displaying behavioral issues. Even though it is hard to hear the diagnosis, it is good to have one because it gives you the path of therapy and growing, especially when their "plasticity" is high. I wish you the best, and I can say that most parents I know do not look down at other kids/parents who are having issues; it's generally not anyone's fault as long as the parent isn't doing something to antagonize the situation. I hope that the balance is to have the child part time in a typical situation, and part time in a special needs addressing situation. Even if your son is brighter than others, he could very well be the one to lead the other kids to develop intellectually/creatively. It's good to have all levels involved with a common denominator.

With your obvious dedicated and loving parenting I think your son will find his way to living a happy fulfilling life, which is what we all want for our kids.

BEST, you know your child best. We forget that, we doubt that, we think that we not be smart enough to really know our child best. We may be missing something, but most often, we aren't. I applaud you for knowing that; with your skin, eyes, limbs and heart, you know your child best.

The reason she can't advise you to keep him at home is that she's not trained to say/think/prescribe that. She's trained to match symptoms to a diagnosis and to think of an adult's sanity (respite) as more important than a parent making a choice to be there all the time for their child (cause if a parent without resources goes off the deep end, who wants to say they advocated for the parent to be in that situation?) Not saying she's a bad person or anything but there are a heck of a lot of stereotypes against those of us who feel we know our child(ren) best and decide to keep them with us. Sorry, but I for one DO know my child best. And you know yours best. Who is she to say that your child won't be challenged? Keeping our children with us or knowing how/when to facilitate their experiences is often the best thing for them and the environment in which they will thrive. He would have the world to learn from with your assistance and patience, because you love him, not because you've been trained to know how to deal with him.

Sarah,

Remember that our children are our greatest teachers, and because they feel so safe with their mothers- we often see their worst behavior! You are such a good mom. Know that.

Have you looked into food chemical intolerance? Gluten, casein and salicylates can contribute to childhood behavioral concerns, even with an organic whole foods diet.

Read about the many symptoms here:
http://www.fedupwithfoodadditives.info/factsheets/Factsheet.html

ADHD, ODD, and various combative behaviors in children are mention here.

Look into the failsafe and feingold diets for behavioral disorders in children, and read or watch videos by Dr. John Breeding, who wrote "The Wildest Colts Make the Best Horses". His life and clinical practice were forever changed by his own wild son.

After only three months on a gluten free diet, my three year old falls asleep each night in less than a half hour -instead of an hour an a half. He was a biter for a year an a half-- and that is so much better. He has become interested in puzzles, focused play, and imaginative play --instead of pestering and screaming and jumping.

I am a social worker, and I also think that diagnosing disorders in such young children is a difficult task. Does a fixed toxic label really fit an ever changing and evolving human being? Think about it. :)

Keep up the good work; your heartfelt thoughtfulness and loyal mothering are a joy to read. Thanks, Allie

My own son Gus, the inspiration for Hedgehog Hiker pants, is my biggest challenge. I've never had him evaluated but I can empathize with you Sarah. This is why.

Gus gets so wildly mad at the drop of a hat my head spins. Things that make Gus mad: the wrong cup, potty training, the wrong pants, Mama and Daddy talking, Daddy's music....Gus's first instinct is to throw his arms around wildly and has clocked me in the face so many times. He shreaks, howls, and cries so loud that I've apologized to our older neighbors. My childless neighbors are scared, and our good friends with children laugh. My husband and I are so patient that it frightens us how fast Gus makes our bloodpressure rise. My only hope is to walk away, tell him to "Use his words", and hope this is an awful phase. He made me so mad the other day that I burst into tears. Gus asked, "What's that?" I told him "Mama's crying tears because you hit me and it makes me sad." This wild little boy actually wiped my tears off my cheek and gave me a hug. Then I cried more real tears.
What I know that a doctor doesn't have to tell me:
My child has trouble with transitions.
My child learns very quickly.
My child plays best one on one.
My child has his own ideas.

I have many times thought, why can't Gus be a little angel and chill out. Maybe we'll have to move to the country so he can run free. All I know is we love him, he loves us, and we take it one day at a time. Cheers.

I have to tell you, Gus sounds like a very typical 3 year old! It probably is a phase.

Your article was heart-opening to read, and I have great respect for you and your DH. My first LO, DD aged almost 4 months, is a very chill, engaged person, whose biological dad has bipolar disorder and ADHD. We shall see...

Anyway, someone mentioned food sensitivities, and I thought I'd post a link to a Portland mom's blog entry that you might possibly find informative: http://cookawakening.blogspot.com/2009_10_01_archive.html.

Thanks for sharing your story.

This stream made me cry. We are going through evaluation with our beautiful five year old boy who is showing increasing symptoms of attention deficiency and lack of impulse control, and I feel like my heart is breaking every day. I have realized in the last week that I am grieving deeply for him and for our family--this is really scary, sad stuff. Our child is smart and funny and kind and we love him madly and support him strongly. In his Montessori kindergarten class, however, he can't fit in sometimes and the school has made it clear they don't have the resources to deal with him in the future unless we get an evaluation, manifest improvements, etc.

Our child has been off gluten and dairy for a long time and it helped quite a bit, especially at first. More recently, we have been working to increase foods that introduce good bacteria to the gut (fermented foods and human strain probiotics). For a while it helped to give him amino acids that support neurotransmitters (5-HTP and GABA). At the moment though, nothing much seems to help.

The real horror is that Portland is very polluted with neurotoxins which are known to cause neurodevelopmental problems. A visit with our pediatrician a couple months ago shocked us by uncovered a chronic arsenic exposure. We can't pinpoint where it is coming from. It's not in our food or our soil or any of the other common exposure points. According to the USA Today "Smokestack Report" arsenic is prevalent in the air in N/NE Portland but we also know that car exhaust and steel foundries can emit arsenic (as well as lead, mercury, manganese and other potent neurotoxins) and the effects of multiple neurotoxins are likely synergistic. I could go off on how things got this bad, but that's another story (anyone who is interested, I suggest you start at the Neighbors for Clean Air site, http://www.whatsinourair.org/).

BPA (the component in many plastic baby bottles and sippy cups) is also suspected of causing these types of neurodevelopmental problems. According to the Pediatric Environmental Health specialist that we are now working with, there's nothing we can do about that after the fact. The damage happens at a particular time in infancy and there is nothing you can do about it when the symptoms start to show up other than to support your child to try to develop the coping mechanisms that will help him navigate the world. There are apparently no tests that measure exposure in the past and there are no standards to understand the results of tests anyway. Experts don't really know what is a relevant level of exposure (or this is what I'm hearing anyway).

With more and more children being diagnosed with behavior disorders and all of us living in an environment that is increasingly toxic, I have to suspect a connection here. Neither my husband or have any history of behavioral disorders in our families. Many believe that this is a modern problem of epic proportions and we will likely see it get a lot worse before it gets better.

Thank you, Sarah, for your beautifully written post. I feel a little less alone in this process and I empathize deeply with your situation and your feelings.

Even if it feels like nothing is working, I'm sure you are making a huge difference in your child's life. He will benefit from all of your efforts.

cafemama,
hugs to you.

ms, could you possibly share some information with me via email? Who was the practitioner who diagnosed the arsenic overload? And who is the Pediatric Environmental Health Specialist you now see? I am compiling related information for an article, and that would be helpful. Thank you!

Jenny
jebevacqua@gmail.com
Pediatric Nurse Practitioner

Following up on my earlier post, my friend with the son with ODD, Anxiety +other, was told to keep toys that are/simulate weapons away from her son, and no TV. She has a hard time with both, again because her husband doesn't totally support her and despite her telling people not to give her son guns/swords for gifts, they do anyway. It doesn't matter if "they turn everything into a weapon anyway" he is still supposed to not have them as toys.

From what I'm reading about the neurological development of children, TV is a big contributor to issues. Kids brains are just different, and they process differently. The flashing and material contribute to improper development, and disrupt proper development. Also almost every show I've seen has poor behavior models getting a lot of glorification, even if there is a moral smoothing out later. My kids don't watch TV so I'm not totally well versed on what's out there, I admit.

Anyway, I'm also touched and sad for the mamas struggling to help their kids/family live a happy existence. And want to re-emphasize Lori's message that it is so much better for the kids and everyone that the mamas are so involved and concerned and nurturing.

ms, I know this is only the tip of the iceberg you are on, but Montessori programs aren't for every child and it may be your son needs something less structured for his schooling. I'm not at all suggesting change schools and he will magically do better, I just want to reassure you there are other school programs out there and a different one may be a better fit for him.

ms, I found it interesting to learn recently that Portland's water has tested "over health guidelines" for arsenic at least 4 times in the last 4 years (if you go to Environmental Working Group's 'what's in your water' page you can see the test results--I can't paste the link here for some reason) and I, personally, have been trying to figure out a water filtration system to address that. Just another avenue to consider!

I second, third or fourth looking into food/chemical sensitivities.

But I also want gently to remind you that you do not simply deserve respite-- you need it. To mother at your best. This does not mean you must put him in preschool, but it does mean that you have to prioritize (as in, top of your list prioritize) getting mama's cup full enough so that you can keep giving and giving and giving.

I have helped run a homeschool preschool co-op for the last year or so for my own 3.5 year old high-energy boy, and would definitely recommend doing something like that if you want to more closely control and observe the whole experience. I am happy to talk with you about my experience if you wish!

melodie at diaperfreebaby.org

Sarah,
Do you have a county caseworker from DD? If you don't you should get one--they can provide respite funds, money for camps, etc.

I have recently become very close friends with a family who's oldest son (age 5) is on the Autism Spectrum and it has been so interesting to get to know her and learn about the life they have been living for the last 5 years. He is considered High Functioning and quite possibly might have Asbergers, but the interesting thing that my friend has said is that she is in no hurry to have him re-diagnosed because it is actually the Autism diagnosis that opened so many doors for their family and she does not want to lose that support and those resources. (Evidently here in AZ, Asbergers does not "qualify" for the assistance that ASD does...)

At first I was a bit surprised when she told me that he has ASD because I actually never would have guessed it if she had not told me--on the surface he seems so similar to my own 5 year old, and they have quickly become best of friends. But then she has talked about how much they struggled, about how for many years she could not take him to the store or to a restaurant, and about how the process of having him diagnosed was long and frustrating and tiring and sad. She said there was definitely a mourning period that came with the diagnosis, and a fair bit of denial. And to see now that she and the family have come so far, and she actually looks back now on the Autism Diagnosis as a blessing is amazing.

My friend now talks at length about the 3 keys to their success so far: Early Intervention, Intensive Therapy and Peer Interaction. She feels strongly that because they acted quickly in getting him diagnosed the ball got rolling on his various therapies sooner, and because she has found a loving, supportive pre-school environment for him, he is able to put his therapies into action with his peers and teachers. It's really an amazing journey, I'm so lucky to have met them and to learn from their experiences.

I'm not at all saying that it's ASD that might be the basis for your situation, Sarah, but as others have mentioned, you know your child best--fight for him! If you think something is not quite right, keep digging. And, if you end up with a diagnosis that you are afraid of, know that it might be the blessing your little guy needs--it might actually open doors for him to receive some special therapies that could have a really positive impact on your lives. Best wishes to you and yours!

I also have to chime in about researching food allergies, heavy metal exposure etc. I just decided to order a hair analysis for myself online and found that I too have high levels of arsenic. I am now going to get my kids tested. You can do this easily without any need for a Dr. This is such a tough situation and my heart goes out to you. It would be great if you could find a ND to help walk you through some options. My personal experience is that all discovery and healing of my two girls has come from my own due diligence and research and not a "specialist."
There also may be other options besides Kerr. I would imagine you are working with the ESD? A good match for a therapeutic program could be a good thing. Or think creatively -- maybe an assistant in a more typical classroom? You don't have to take their offer as the only option if you can find something you feel is better because you DO know your child best.

Sarah, it's been an exhausting day so I can't formulate a proper response to your beautiful post. I just want to chime in with my 100% support, and echo your words back: you DO know your children best. You are amazing.

My son is a spectrum boy and so I can empathize with the challenges you're facing, Sarah. There are many professionals who can help you, not just through preschools, but also through family-based therapies. Because you love your son and know him best, it's up to you to learn from their training and find some strategies to help him manage behaviors. Special needs preschool teachers are used to biters, etc. and at best, will help you through that process. If not, another setting or another strategy can also help you.

Em: It sounds like Gus has sensory integration challenges, like my son (and like me). It's terrifying until you understand it more. There are great ways to help little ones cope better with their sensitivities to light, sound, textures...but without learning them, you're totally at the mercy of your child's frustration and anger at their inability to cope.

The Out of Sync child will help you learn more.

Sarah, Raising the Spirited Child is another great resource. Both books are very readable.

Good luck to all of us!

I know this was posted over a year ago, but my heart goes out to you. If you would ever be interested, there is homeopath, Dr. Will Taylor, MD who is amazing and in town. He is known all over the world and I've seen him do amazing work with all types of children. On a more personal note, I know he struggled with one of his own children. You can find him at the NCNM clinic: 503-552-1551. If you aren't familiar with homeopathy, think of it as a gentle opening of a door that doesn't change who a person is, but allows them the freedom to choose a new path if they want.

First yes children under three years old CAN have strep, my daughter was 22 months old when she got her tonsils and adnoids removed from haveing strep for 6 weeks straight. My son is 2 1/2 now and has had strep 3 times in the past six months. What I would suggest is to take him to the pediatrician and have them do a strep culture regardless of there protests, it is possible, is ur son eating normal? When my daughter was sick she was also restless she wasn't sure if she wanted to be held or left alone she was very upset but couldnt tell me what was wrong so it left her frustrated. I would just let her do whatever made her feel better, if that be sitting in my lap or laying alone on the bed. Good luck and I hope he feels better soon.

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