The Darkest Light
This extended "holiday" has given me a boot in the ass I really wasn't expecting to get right now. I've known for a long time that there was a high chance that my son could end up showing signs of mental illness. It runs on both sides of his family. The signs have been there since he first started talking and whenever he felt really bad about anything he told us he wanted to stab himself with a sword. I don't know what parent's blood wouldn't run cold at hearing their two year old say such a thing, but for a person who went through suicidal periods- hearing him say such things felt like being killed myself.
For many years people have advised me not to "project" my own issues onto him. Since I've never told him I ever wanted to kill myself I don't think I was projecting myself onto him much. For years people have said "He's so young, just wait and see." Or they've said "Oh, he's just a normal kid, they all say that kind of stuff." But when I ask directly if their kids have talked like him they have always had to admit that theirs hadn't.
With Max's food issues people have consistently insisted that he is just playing us for power and that we're letting him step all over us. We've known differently. People are always trying to make it our own fault or suggest that Max is just being a spoiled kid because poor kids wouldn't ever get to choose what they eat and no kid will choose to starve.
But as I have been trying to just watch and listen, wait and see, I have seen him develop more and more into a vibrant version of Philip and I. Most parents would be thrilled because isn't that what so many people want? Little "minnie me's"? Which I think is creepy, but who cares what I think, huh? I never looked for my kid to be exactly like me and I have always been hopeful that in many ways he would not be like me because being me has been a 39 year challenge I wouldn't dream of sticking anyone else with.
I honestly don't understand how I managed to talk myself into believing that I could have a baby who wouldn't get my mental illness. But, I have agreed not to sit around mourning what I can't change and feeling like a piece of shit for being selfish enough to have a child.
So all these years I've been trying not to jump any gun or race to consign my child to a clinical labeling. But there comes a time when a mother knows better than everyone else- besides a professional psychologist. There comes a time when a mother has seen her child suffer for long enough with something he has little control over and isn't aware of. There comes a time when it hurts too much to watch; unable to help enough, unable to ease through every minute.
The truth is pretty hideous: I can't do this without professional help anymore. No, that's not quite the truth that I need to put out there into the light... OK. OK.
Parenting has driven me to drink. Most seriously. My goal this year is to lose weight, to drink a lot less beer, and to be healthier both physically and psychologically. Which I am unable to do while my child is so challenging to raise.
There. It is said. The horrible ugly is said at last. Having him home so much longer than usual has highlighted some things I've been worried about but which are now so blaringly obvious that if I ignore them any longer and anything bad happens to my boy because of it I won't forgive myself later.
The truth is that both my husband and my son need psychological help and yet I'm the only one in the family who is medicated. But never medicated enough and the longer they go without therapy or medication the harder I drink, the less I sleep, the fatter I get. I'm not saying I don't make choices here. But I'm saying that all these choices I am making are allowing me to put off complete mental exhaustion. They are giving me some kind of mental calm that otherwise would be decimated by everyone else's panic attacks in this house.
I can't force Philip to get help, and anyway, neither of us have medical insurance and won't be able to afford counseling or extra meds until we do. Or until we're making a lot more money than we seem capable of.
Max has medical insurance, however, and so it is time to get him professional help. I have been writing this post for two days now and have wrestled with the question of putting it here on my blog. I know so many people who would think putting something so personal about their kid out there for others to read is a violation of their privacy. There is some merit in that. But this is my story too. And if there is only one thing I can teach him in this life I hope to God it will be to never be ashamed of mental illness.
I have decided that telling it here is better. If he's angry at me for doing it when he's older then we can fight it out. Parents who keep this kind of stuff private are rarely spared anger anyway because what I've observed about parenting is that you can never do it right. Cardinal rule: you will fuck it all up.
How many other parents have asked themselves the same questions I have? How many other parents have had to make choices and decisions for their children that were terrifying and wished to god it was all easier to talk about? I'm not going to hide it. Someone else out there is wishing they didn't have to feel so alone and wishes they could know what other parents are doing in the same circumstances. God knows I wish I could know more parents who have a child like mine so I can know how they survive it. So I could navigate this terrifying path with a little more light.
This week I begin the process of finding a proper psychologist to assess Max because I believe he suffers from OCD and generalized anxiety. I am confident that I am not going to find I'm far wrong. I knew what I suffered from before I got an official diagnosis and I also was not wrong when I guessed my own mother's diagnosis which was confirmed several months ago.
I have made the following list to submit to Max's doctor:
Fiber Texture Sensitive: he won't wear denim or any slightly
stiff cotton. He prefers sweat pants or soft sporty fabrics. Is very disturbed by seams in his clothing if he can feel them.
Other texture sensitivities: bumps in his socks he will not tolerate. He'll try on four pairs a morning to find a pair without them. If
his clothes don't hang right they will drive him crazy. Mostly he's
happiest when he's just in his pajamas at home. Things itch him and
hurt him and bother him that seem inconsequential to everyone else.
Getting him dressed has been a nightmare since he could fight me over
it at 18 months old. Hates hats because they hurt his head.
Food Texture Sensitive: nothing mushy, EVER. Crisp textures are the
best. When anything that's supposed to be crisp goes even slightly stale
he won't eat it. Doesn't like wet textures, for example: if you wash
slices of peeled apples because they got crumbs on them he won't eat
them. Anything that is sticky is usually despised, especially if it gets
on his face, hands, or clothes. Won't eat bread that is too dry and dense
nor bread that is too white and squishy.
Taste Sensitive: This is a constantly evolving and revolving issue which drives
me to drink.* He has such an advanced sense of taste that he can tell the
difference between three vanilla ice cream brands. He likes things one
day (or maybe for three) and then suddenly it tastes bad. Sometimes we go
through periods where everything tastes bad. If you slightly over toast
anything he can taste it as burnt.
More taste sensitivities: he once claimed for almost two weeks that everything tasted like coffee and it was almost impossible to feed him anything. I still don't know how he knows what coffee tastes like but he says his dad gave him a sip once.
Foods can't touch: If there is a microscopic crumb on a piece of peeled apple, he won't eat it. If he thinks his food has come in contact with any other food, he won't eat it. Especially if he suspects that it's come in contact with any of our food. He hates sitting next to other people's food, especially if he can smell it. Won't drink water if the outside of the cup is wet. Won't eat food if there is a drop of water on the plate. Won't eat two kinds of food on the same plate or at the same time. Won't sit at a table to eat meals. Ever since he was a toddler the only way we could get him to pay attention enough to his food to eat it was to let him watch movies while he ate it so that he wasn't really paying attention to it at all.
Foods can't be irregular: if an apple has a speck of a brown spot on it, he won't eat it. If there are holes in his bread, he won't eat it. If his egg hangs over his toast, he won't eat it. If an egg has a crispy edge he won't eat it and shivers in repulsion. If the egg has holes in it he won't eat it. If anything doesn't look like it's the right color or the texture is off or some piece of the food is ragged he won't touch it. I once got him to eat an irregular piece of cucumber by making him close his eyes and letting me feed it to him.
Other red flag issues: Often demands that we wash our hands before touching his food. Although he doesn't seem overly concerned about germs in general, we were sharing a piece of ice cream pie at a restaurant and he requested his own so that he wouldn't have to worry about touching our "spit area". He won't drink water that has sat around for too long. He won't let you reuse a bowl for a snack unless you wash it first.
Doesn't like leaving the house: He says he doesn't like going far from the house because it isn't comfortable. He hates going downtown, out to eat, to most people's houses, to school, to take a trip (unless it's to visit his friend Sam in California), or to go to friends' houses. He prefers friends to come here. If we let him he would stay in his pajamas for weeks on end and never set foot outside.
Doesn't play well with others: He really freaks out when people mess with his stuff. If they mess up his "set up" of Legos he treats it like a human rights violation and his friends and family don't like that so much. If they don't play exactly as he directs them to play he freaks out and has what appears to be a panic attack. Or gets angry. And yells. He can always tell when his stuff has been messed with. He arranges everything precisely. His favorite activity every morning (when he was ten months old) was to arrange a stack of videos very neatly and precisely. It was fascinating to watch.
He is extremely sensitive: It is the easiest thing in the world to hurt his feelings. Try joking with him. He tries to joke with other people but generally can't tell when they are trying to joke with him and takes offense. If people tease him he takes it seriously and thinks everyone hates him and feels like a horrible outcast. His hurt feelings alternate with retaliatory feelings of revenge.
Not overly sensitive to others: A great combination of traits, huh? He has almost no self control when it comes to voicing his opinions and feelings which are often very honest and frank and therefore quite upsetting to everyone. He doesn't understand that this is the same thing that others do that hurt his feelings. He doesn't seem to mean to hurt people and feels bad when you call him on it but continues to say whatever is on his mind at all times.
Expresses himself violently: With words. If he feels bad about something he's done he expresses it by saying things like "I should just die" or "I don't even deserve to have a family" or "I'm going to kill myself" or if someone has really hurt him he says things like "I hate so-and-so and will never talk to them again..." or worse yet "If so-and-so does that to me again I will kick him in the balls". Very extreme expression. Self harm has been in his vocabulary since he could talk. He used to bite himself frequently.
Odd quirks: He doesn't want to throw anything away. He tries to keep all the packaging to the toys he receives, all the instructions, and even the stupid little ads they always include. He won't throw old toys away either, not even if they're broken. He revealed to me one evening that he thought all his things had feelings and would be upset if he threw them away. He also doesn't like it when I clean the house because when it's clean he's uncomfortable. When the living room is tidy he says it's too "empty" and it bothers him.
Physical panic: Whenever he experiences physical pain or discomfort he dives quickly into panic mode in which you can hardly help him because he has already decided nothing can help and he won't let you near, but simultaneously he is screaming that he needs help and why don't you do something?! It doesn't matter if it's something really bad (it sometimes is, like the metal in his eye, and sometimes it's not, like a mild bug bite) his reaction is generally pretty severe. Yet I have seen the kid take the most intense falls from his bike and get up without a flinch even while he's bleeding profusely from the knee.
The Negative spiraling: One little thing going wrong in his day or his routine can make him see his entire life as a giant black hole of pain and decide that life is impossible and he sees no choice but to give up. Talking him out of his negative state is as exhausting as it is futile. It is strong and it is real to him. He can extrapolate the miserable outcome of any experience into the worst case scenario before you can take your first swig of beer.
Afraid of the dark: Lots of kids are afraid of the dark. Mine is very serious about it. Needs full lights on and prefers the hall lights on as well. He suffers bad nightmares often and this doesn't help. We used to turn the lights off after he went to sleep but he would wake up in the dark and be terrified so often that we haven't dared try that for at least a year or longer. He isn't a good sleeper and never has been, although it's become easier and better over time.
Random texture aversions: he hates anything sticky on his skin. He has an extreme aversion to getting blood on his fingers which has been quite an inconvenience since he has a terrible problem with gushing bloody noses. He would rather let the blood drip to the floor and wait until we find him tissues than to put pressure on his nose with his own finger which inevitably gets bloody. Which he then panics about. Not too keen to play on grass. Doesn't like to be barefoot outside, ever. He also will not sleep with flannel because it freaks him out.
Routines: All kids seem to thrive on routines but our kid holds firm to our routines as though his life depended on everything being the same at all times, every day. He hates going to new places, especially new places to eat. He hates going to new people's houses. He has daily routines that he will go to great lengths to maintain such as- eating his dessert, then pajamas, then brushing his teeth, then snuggle time. God forbid you ask him to brush his teeth before putting his pajamas on.
Deep Worry: He thinks very deeply about everything and unfortunately often worries about things as well and can't let go. When we moved he was really worried about our old cat Ozark who had been buried in our old yard last February. He kept thinking about him being alone there without us and feeling sad and abandoned. He thinks about the universe- galaxies and is very concerned about how they were formed and he wants to understand everything so much and it really disturbs him to get ambiguous answers. He's worried about so many things and there just aren't enough answers.
Over this vacation his world has shrunk and because of being snowed in and having a negative experience with a friend at the beginning of it he has not wanted to play with any friends (we've strong armed him anyway) and all he wants to do is remain in his pajamas every single day all day, he wants both his parents to never have to work again so they can stay home with him, and he wants us to play with him. He doesn't want to go outside, play with friends, see anyone but us (and his Grandma).
I suddenly saw what was happening- his world just became extremely small. It is very hard to be the only companion of a child. I don't want to be playing Legos and Bionicles for the next ten years. He should be playing with other kids and doing parent/kid things with us like baking cookies, reading, going on hikes, or to the park. I asked him why he never wants to go anywhere and he told me that it's because he isn't comfortable anywhere else. If I let him he will be a confirmed agoraphobic by the time he's nine years old.
So few parents understand what it's like to have a child like mine, unless they have a child like mine. The pain I feel for what he goes through and how easily he is misunderstood is like having my heart broken every single day. The wedge it puts between me and other parents makes me lonely and then when I get to talk to a parent who is having similar experiences it's like getting the freshest breath of air but I also feel like I want to monopolize them and suck their energy up because I don't have any of my own anymore so sometimes I keep my distance so I don't scare them off and that's lonely too.**
So much good is happening right now. So many positive changes have been finally coming through and I want Max to feel them too but instead he's just getting worse and worse. So while I really want to stop drinking a six pack of beer a night so that I can stop being fat and miserable which isn't how my spirit wants to feel- I am going to have to find a way to make my parenting life a hell of a lot less stressful because I can't parent my child right now on less than six beers a night.
Don't any of you dare judge me unless you have gone through what I go through every day. Don't anyone dare dish me up platitudes or tell me that going to alcoholics anonymous will give me the strength to live in a house with two untreated mentally ill people because I already know it aint so. I am never drunk and am not exactly ashamed of doing what I've had to do to not kill myself at the end of the day when it's been one long stream of panic attacks from three directions.
Every time I think I've spilled my darkest secrets I seem to find there's more. More. And more.
I know what my child needs and it isn't vitamin B12 (though, with his diet it's tempting to suspect a vitamin deficiency- we keep him on a steady supply of multi vitamins usually) nor does he need some metaphysical intervention. What he needs is a professional assessment so his options can be sorted through. He needs more support than he can get from his mentally ill parents. He needs therapy and possibly medication. And if I choose to wait until he's older it could be too late.
So along with the rest of my life I'm trying to clean up this year this will also need addressing because it is one of the greatest sources of stress in my life and it's not one that a hot bath can make disappear. If I'm going to reach my goals this year then I have to step up to the plate and stop being afraid of saying what needs to be said, of addressing the thing that scares the goddamn crap out of me. I've listened to other people long enough.
I've listened to them and I've listened to Max.
Max is this huge light of a person who's gifts are pretty incredible. He will never be like other kids or people because he was born to lead his own brigade. But he won't be able to see or use his own gifts unless his brain is allowed to rest. The greatest way that I can show my love to this amazing child of mine is to show him how to help his brain function better, to show him that having a mental illness can be a pain in the ass but most of us people with mental illnesses are people everyone else needs. We are people who see differently and have the power to show others how to see differently too; through many mediums such as art, science, words, and music. Mental illness can uncover what lies beneath the layers of this human sheen.
I am scared to get him an official diagnosis but I'm even more scared of what will happen to us all if I don't.
*I wasn't kidding. I'm still not kidding.
**A couple of blog friends of mine have been so generous as to share with me their own similar challenges with their kids and I have one local friend who knows what I go through because of her own experience with similar issues and I cannot stress enough how much it means to me when someone talks to me who knows what I have gone through and helps me not feel like an asshole or a failure of a parent. You know who you are- you have made me feel so much less alone and the three of you have offered much needed balm to me- THANK YOU!
Comments (38)
yes
Posted by Blaize | January 3, 2009 9:41 PM
Posted on January 3, 2009 21:41
That was a beautiful comment, Blaize, and so concise it took my breath away.
Thank you.
Posted by Angelina | January 3, 2009 10:13 PM
Posted on January 3, 2009 22:13
I had no idea...you sound as if you have the steps all lined out to help Max. Good for you. My ex's parents never bothered and what a shock at 27 to be suddenly alone, pregnant with my 3rd child. I guess after 7 other kids they were to tired to notice he had problems. Max is lucky to have you as a mother...I have told you that before. You know what he needs and you will get it for him.
Thinking of your family
Robin
Posted by Robin | January 3, 2009 10:41 PM
Posted on January 3, 2009 22:41
I hope that you can find the help you need. I completely understand what you are going through. There were a couple of people in my home growing up with official diagnoses and medication and a couple that needed them, so I see what havoc mental illness can have on the machinations of family life. I can only be thankful that I wasn't the adult in that situation who was responsible for taking care of everyone. You have an awesome responsibility and it's heartening to see you take it so seriously. Big hugs for you and your boys.
Posted by futuregirl | January 3, 2009 11:23 PM
Posted on January 3, 2009 23:23
I'm so relieved to hear you have insurance for Max. Get the assessment so you know how to move forward. I wonder if, with all of your waking up these last few months, he's feeling the changes and that's challenging his need to have everything stay the same. Especially with how very sensitive his is. These changes are the very best thing for you, which in the end will be so good for him, too... and in the meantime, finding some good quality, consistent help sounds like the best course of action.
Your observations are remarkable. As I read, I kept wondering, do I notice even half of the things about my children that are relevant to our life together?
Many nights I pour glasses of wine to wrap the blanket of fog around myself from parenting exhaustion. I don't blame you for that at all.
Keep swimming forward...xo
Posted by kelly | January 4, 2009 5:31 AM
Posted on January 4, 2009 05:31
You are doing the right thing in getting him diagnosed. I think it is better to over-react to a child's health than not act at all (particularly when it comes to the mental health aspects). Not only will this be good for him but good for you - you will have an advocate to help you with Max.
Posted by Karmyn R | January 4, 2009 9:23 AM
Posted on January 4, 2009 09:23
I have admired you and your blog for many months. I first read the piece you wrote on loving a home so much, and I was hooked. You write your feelings so honestly, and I think you are better off for sharing them. I have two dear friends one in his 80's the other just 21 who suffer with mental illness. Both of them are creative, incredible people who are so misunderstood. I have seen the toll it has taken on their families(both have resorted to beer and wine, you do what you have to do!)Anyway I am thinking of you and wish you the best. You are stronger than you think.
Posted by kim | January 4, 2009 10:49 AM
Posted on January 4, 2009 10:49
I agree, the timing is right. Max will gain skills that are much harder to gain at a later date. You know I speak from experience.
Posted by pam | January 4, 2009 10:59 AM
Posted on January 4, 2009 10:59
As someone with no kids I can only imagine what you are going through. As someone with a family history of varying mental illnesses I say yes! The sooner the better. I offer no advice but support you in your quest. For what it is worth you guys are in my thoughts. -t
Posted by Tonia | January 4, 2009 12:30 PM
Posted on January 4, 2009 12:30
As someone with no kids I can only imagine what you are going through. As someone with a family history of varying mental illnesses I say yes! The sooner the better. I offer no advice but support you in your quest. For what it is worth you guys are in my thoughts. -t
Posted by Tonia | January 4, 2009 12:31 PM
Posted on January 4, 2009 12:31
You have probably already heard of Sensory Integration Disorder but I thought I'd mention it as something to look into just in case. I'm not suggesting that you don't seek help - just that there are a lot of possibilities as far as what the diagnosis might be.
Hugs to all of you-
H
Posted by Helen | January 4, 2009 1:24 PM
Posted on January 4, 2009 13:24
You are doing the right thing for the right reasons.
No doubts. Trust your heart.
We should all be so brave.
Posted by Current | January 4, 2009 1:55 PM
Posted on January 4, 2009 13:55
Angelina, You just described the lives of my aunt and cousin. I will never even begin to pretend to truly know what you're going through, because I've only been able to be a small part of my aunt/cousin's lives (geography). My aunt's life has been complete hell since her daughter was born. That's not a nice thing to say, but it's truthful.
They've been to specialists since my cousin was a toddler, and have tried so many different therapies and medications.
While I have no clue if your son has the same diagnosis (my cousin has Aspergers, but she also has other diagnoses), there are many similarities in what you and my aunt go through as parents.
As a family member, the hardest part has been that my aunt has tried to hide my cousin's problems from the family and others. We didn't learn of the Aspergers diagnosis until a few years ago (she's now 15). But we all knew something was very wrong. We've not been able to support my aunt emotionally because she has not let us.
But my aunt's life has been full of heartache...wondering if her daughter will ever have friends, wanting to have a birthday party for her, wondering if she'll be able to sustain a relationship and be a mother someday. Making multiple meals in a row for her because, like you mentioned above, favorite foods touched something, were too hot, were overcooked, etc. Sending back three plates of chicken nuggets at a restaurant because of similar issues. Sitting at the school in the office because my cousin wouldn't stay at school if my aunt weren't there. My cousin has flat out refused to go to school for weeks/months at a time.
My aunt says that the turning point was the day a truancy officer came to her home and someone (other than my aunt/uncle) finally witnessed my cousin being violent. Those are just a few things I remember that I even know about.
When she was 4, my daughter was 1. My sister told me never to leave them alone, as she heard my cousin devising a scheme to get my daughter under a desk, and was rigging a drawer to fall on her head. Once in the car, (same visit) she told me she wanted to kill my daughter.
Anyway, it's been a very rough life, one I wouldn't wish on anyone. I'm truly sorry to hear that you go through some of the same things, even if it's a different diagnosis, or not as severe as my cousin. I don't know how you make it through the day.
Please do start to get help for him. It's not easy going it alone.
Posted by DG | January 4, 2009 2:11 PM
Posted on January 4, 2009 14:11
I admire your bravery in sharing this - some of life's challenges are best not undertaken alone, and while you speak from a realm of experience that I may never fully understand, I will always read with an open mind and an open heart.
*hugs* and good thoughts for this new year - let it be one of good fortune and personal growth!
Posted by Allison | January 4, 2009 3:02 PM
Posted on January 4, 2009 15:02
Thank you everyone for such support. DG- that sounds like such a tough life for your cousin!! Even tougher than what we go through. Max has never seemed to show actual physical violence to anyone. I get through the day by knowing that at 5pm I will have lots of beer!
I know a couple of parents who have children with Sensory Integration Disorder and have thought that that could be what Max has too- but his behaviors seem distinctly OCD and anxiety based as well. It's entirely possible that he has more than one diagnosable issue. Mentally ill people rarely have just one diagnosis.
I will begin making phone calls tomorrow.
Posted by angelinaa | January 4, 2009 3:18 PM
Posted on January 4, 2009 15:18
I read everything very carefully in spite of my poor english, and I think I understood it all.
And I think you're right to choose this way (path?).
I found myself in some of the things you describe. I totally cannot eat in a plate with a drop on it :) And so many other things.
I think there is some little obsessions he could live with (like I do). But others seems so annoying and sad for such a little angelical boy.
I am sending you love. Real love. Even if I haven't met you yet. This is true.
Posted by MissYuzu | January 4, 2009 4:28 PM
Posted on January 4, 2009 16:28
I've been reading your blog for a while now. I enjoy (might not be the right word) or should I say I am fascinated by what you have to say. I am the mother of a son with mental illness. I can only give you the hope of a mother who has been there. Maybe not in the exact same way, but we went through hell and back. I felt as though I was walking on egg shells in my own home or to use another analogy: I wasn't sure which occurence would set off the minefield of our war zone. I took him to be evaluated at about age eight. We went through many trials of many medications to find what worked for him and what his diagnosis was. The final diagnosis was bipolar with some ODD, OCD and ADD, phew. My son is now 19 and just finished his first semester at a Junior College. He has definite goals in his life. There were many times I wasn't sure which one of us was going to survive. On a positive note: he is bright, creative and developing into a nice young man.
There is light at the end of that tunnel. I just wanted you to know that. I wish you much progress on your journey with your son. I recommend two books that helped me: One is the Bi-Polar Child (an excellent resouce even if he is not Bi-Polar) and the Explosive Child (again a good resource even if he is not explosive.) Thank you for your honesty.
Posted by Penelope | January 4, 2009 4:28 PM
Posted on January 4, 2009 16:28
OMG! I'd be so driven to drink, too. Really, Angelina, you have endurance and you have guts. Not only are you dealing with your own issues but you have to be The Mom and pick up the slack for your loved ones who have serious problems of their own.
Of course, you're doing the right thing. And your ability to observe, articulate, and record will be a big help. You wrote recently that you were the right parents for Max...and you are. You have insights into his internal horrors that others couldn't have and recognize the seriousness of his difficulties. He is lucky to have you.
Posted by mss @ Zanthan Gardens | January 4, 2009 7:08 PM
Posted on January 4, 2009 19:08
I found your blog when I read your post on your cat dying. I've read most of your stuff ever since. (Cooking actually gives me the whim-whams.) (Although I love cheese.)
My thought is that you need support too. Find a support group through the local free clinic or foundation. Support groups are a lifeline.
Best,
Alinda
Posted by alinda | January 4, 2009 10:15 PM
Posted on January 4, 2009 22:15
Many blessings on your quest for help for your precious Max!
My daughter's last babysitter has a son about his age who that was diagnosed as Autistic (HIGH functioning) last year - she also kept observing & pushing for some answers! He WILL NOT eat veggies, etc. etc. He's very loving & huggy - so I (from the outside) would never have guessed some of the issues she deals with DAILY.
ESD has programs that they have tapped, & there's a pilot program using medical Qigong that is helping him! (WOU in Monmouth is involved in this)
I'm happy to give you more info if you want to e-mail me :)
Again - blessings, & remember to take care of YOU!
Posted by Nadya | January 5, 2009 1:39 AM
Posted on January 5, 2009 01:39
Have you looked into Sensory Processing Disorder? My son has that and many of the issues you describe. Check out the Sensational Child. SPD occurs in about 1 in 20 kids, has a diverse set of symptoms and is treated by occupational therapy and changes to lifestyle. Your son definitely sounds like he needs OT.
Posted by Anonymous | January 5, 2009 7:39 AM
Posted on January 5, 2009 07:39
Angelina, I wouldn't dare judge you! How could anyone possibly judge you who hasn't walked in your shoes. I'm so happy Max has insurance and you can get him to the doc. Could be medication is all he needs to feel better. Please let me know if I can do anything for you and your family. really.
Posted by Diane | January 5, 2009 8:03 AM
Posted on January 5, 2009 08:03
My daughter was diagnosed with OCD and anxiety disorder when she was six years old. She is now 20. I know what you are going through and you are doing the right thing with getting him help. My daughter has/had most of the same issues as your Max and with medication we both survived. I also have OCD and I saw the classic signs of it when she was very young. I think by getting help when they are young helps them to understand or accept that there is nothing to be ashamed of. I could go on and on, but just wanted to let you know that I understand.
Posted by Mary D in Texas | January 5, 2009 8:05 AM
Posted on January 5, 2009 08:05
I commend you heartily for posting, because I can see how cathartic it is for you. And, yes, you may find other parents going through these issues, or they may find you, and someone could (will) be comforted.
I want to put another diagnostic suggestion out there for you, too. (Although I see a previous commenter has already done so.) I've suspected for months that you have it pretty severely, and I'm pretty sure Max does, too. These things usually come in pairs, if not groupings, and I suspect that this one is genetic.
Sensory Processing Disorder. I have it, and my son has it. I would never have known that these little oddities about myself (texture sensitivity, Splenda tasting like a chemical nightmare, oversensitivity to crowds/noise, etc.) were more than just oddities if I hadn't been doing research regarding my son. Occupational Therapy is the key, and it has helped my son tremendously. The other key has been a partnering diagnosis (in our case, ADHD) that will allow him to receive services in school. That IEP is the best damn thing that ever happened to us. SPD is not recognized as a disability, so it isn't covered by the ADA and therefore isn't a "real" reason in the government's eyes for kids to get special ed. But the special ed teachers know about SPD, and they have the tools to help.
Two books I highly suggest you get: 'The Out of Sync Child' and 'Kids in the Syndrome Mix.' I'd start with Syndrome Mix in your case. I got mine at the library, but I wish I'd bought it. I will one of these days...
Posted by Aimee | January 5, 2009 5:20 PM
Posted on January 5, 2009 17:20
Thank you so much, everyone, for your thoughts and support!
I have an open mind about finding out what is up with Max. I am not an expert. Since Depression and Anxiety run through both sides of his family and he shows strong signs of both, it is what I most strongly suggest. Because I am familiar with both of those and know that they are highly treatable with medication and therapy I hope that it ends up being one or both of those instead of the lesser known and less easily treated SPD or Asperger's.
Aimee- I doubt I have SPD as I have very few tactile, taste, and texture issues. All of the symptoms and problems I experience are classic Anxiety issues. Though I am sure that many issues overlap.
I am also keenly conscious of social cues though social situations stress me out, it isn't because I don't see or understand the usual cues which is something both the other syndromes have difficulty with.
I've made the first step today by calling Max's regular doctor and have scheduled an appointment for the end of the month. We'll see who she recommends we see.
Posted by angelina | January 5, 2009 6:05 PM
Posted on January 5, 2009 18:05
I don't think I have Sensory Processing Disorder (I'm the dad of Max), but all fake sugars taste like polyester to me. I can taste them for hours. I don't like noise or crowds, unless I'm prepared for it.
I just figure I'll take whatever they give Max, to make up for the beer loss.
Posted by Anonymous | January 5, 2009 7:01 PM
Posted on January 5, 2009 19:01
Thinking of you all.
Posted by Fiona | January 5, 2009 8:36 PM
Posted on January 5, 2009 20:36
coming in late here but let me just say this...it irritates me no end when parents keep the charade of perfection going. You are right on in sharing because you never know who you will help in the process, besides your son. My kids are nearly grown and I found great solace talking with other parents about our kids who were ADD and needed meds, sneaking out at all hours, doing dark deeds in dark corners, skipping school, drugs/alcohol and the likes. Those who pretended to live in "stepford land" and wanted everyone to think they had the perfect family never shared what was really happening in their kids's lives, how they were struggling with depression, anxiety, failing grades, etc...the list goes on and on. And perhaps if more of us continue to be honest with each other we can build trust and gain strength from each other. Everyone wins when that happens. I have great respect for your words in this post my friend.
Posted by Kathy | January 5, 2009 10:04 PM
Posted on January 5, 2009 22:04
My son had many similar problems when he was a kid. Taking cod liver old helped with the sensory issues trmendously. He could tolerate very few foods because of texture issues, but after three weeks on codliver oil he started asking to try new food! Also, loud noises stopped freaking him out and he was generally less persnickety.
The Feingold diet helped with behavior and sleep problems. Until we tried Feingold, he walked and talked in his sleep and suffered from aniety and nightmares. Once we got all additives out of his diet he started to get regualr sleep. I don't think he got a decent nights sleep until then. He was 11!
Posted by lynnie | January 5, 2009 10:23 PM
Posted on January 5, 2009 22:23
If all children could be so lucky, Angelina, as to have a mother who truly loves, cares for, and seeks to understand them as you do.
"he won't be able to see or use his own gifts unless his brain is allowed to rest" - that is so incredibly insightful, and what so many with mental illness need and never have. That whole paragraph is a beautiful, wonderful, exceptionally loving thought. Max is very lucky to have you by his side.
Posted by Melinda | January 6, 2009 2:58 AM
Posted on January 6, 2009 02:58
Yay for taking the first step! That's the hardest one, usually.
Actually, SPD doesn't rely at ALL on social cues (that's more of an ADHD thing), and it's very much helped by occupational therapy (which is generally enjoyed by those with SPD). I don't want to be argumentative, trust me, just want to share what I've learned.
The other thing most people who have heard on the basics of SPD don't usually get is that it's more than tactile & taste. It extends also to the senses that aren't so obvious. Becoming overwhelmed...classic anxiety, yes (and I'm not denying that's an apparent issue, too), but also classic SPD, and having both can certainly exacerbate it. The truly frustrating thing about SPD is that it can present in hundreds of different ways and still be itself. (Others to note: vestibular sense, decreased upper body strength, etc. It's so diverse, it's almost impossible to describe in this kind of setting.)
I still strongly suggest Kids in the Syndrome Mix, which covers many of the issues you're talking about, giving a little insight and talking about how they work together (and against each other).
Good luck with your journey...I hope the doctors can give you the answers that best help you all.
Posted by Aimee | January 6, 2009 5:12 AM
Posted on January 6, 2009 05:12
You are bravely doing what is best for Max, taking the first steps. Would never judge, parenting is hard and wine is my crutch.
Posted by French Knots | January 6, 2009 12:49 PM
Posted on January 6, 2009 12:49
You are bravely doing what is best for Max, taking the first steps. Would never judge, parenting is hard and wine is my crutch.
Posted by French Knots | January 6, 2009 12:50 PM
Posted on January 6, 2009 12:50
Our son, now 25, had many of these symptoms. We were very bullheaded about "he's ours, therefore there is NOTHING the matter" and did not go for a diagnosis until he was eight -- anyone could tell, by looking at US, that we were going to have to do this -- he was exhausting to deal with (can still be).
We got Pervasive Developmental Disorder which was later changed to Asperger's Syndrome, along with extreme dyslexia -- can read a digital clock but not one with hands, for example.
Life for years after that was hell for us all, but at least it was hell with a little help, and then a lot of help. We could get an IEP, followed after his school years by SSI, Section 8, etc.
I remember how devastated he was, one day, looking at all the grads and undergrads scurrying back and forth on the university campus where i work, and turning to me and saying "y'know, it hurts, knowing I'll never be one of these." Not because he wasn't as smart as they were, but because his universe chunks into much smaller pieces than theirs, so that by the time he gets to the end of what he's saying, he's on a different topic than he started with, thus lacking the continuity of argumentation and substantiation that is the soul of all college-level work.
It hurt to hear his hurt. We're college people, which added to that. Still ...
We're proud of him. He understands clearly what he is up against, and repays society (his term) by volunteering more than 1/2 time at the food bank's community gardens, where he is greatly valued for his knowledge of plant minutiae, and is studying, with our help as intermediaries, to be a Master Gardener. My gift to him over the holidays was a good set of pruning shears in its own holster, for his orchard work. You should have seen his eyes when he opened the package ...
Posted by risa b | January 6, 2009 1:56 PM
Posted on January 6, 2009 13:56
Thank you Jo! Oh my- you must be quite large with the baby now. I am so sorry I haven't visited your blog in a while. I'll visit soon to see your progress!
Risa- thank you for sharing your story with me. I almost cried. I don't anticipate that it's ever really going to be easy for us either but I think not being alone with the weight of it all is helpful in itself. I am always much relieved to know what is going on- I like labels. For instance: I pretty much knew what my own diagnosis was before going to get assessed but it made it easier to address my own issues when I knew exactly what they were because that really helps me target what is helpful for me and what isn't. If I can even just know what things I should be applying a firmer hand to with Max and what things to have more compassion about- I wouldn't feel so unsure all the time. So we'll see what his diagnosis will be. And then at least we'll know what direction of treatment to walk towards.
Thanks so much.
Posted by angelina | January 6, 2009 3:20 PM
Posted on January 6, 2009 15:20
*sigh*
Max and I could be twins. Literally. Other than the fact that I'm 19. I was diagnosed with SPD, OCD and general anxiety when I was 11. I have had occupational therapy twice a week since then. I still have issues. I CANNOT stop eating colored foods in order of the rainbow, I will never wear fleece, flannel or any kind of microfiber and I still can't deal with foods touching on my plate. But I can walk without counting steps, drive without fear of a screaming horrible death, and eat at restaurants (get soup ... it can't be easily messed up and it won't mingle with your other food). I have a full time job, I go to school part-time, I even have a boyfriend.
There is always help and hope and support.
Posted by constantina | January 7, 2009 6:43 PM
Posted on January 7, 2009 18:43
Great post!
Posted by toys | April 28, 2010 3:58 AM
Posted on April 28, 2010 03:58
Great post!
Posted by How to Have a Flat Stomach | April 29, 2010 11:22 PM
Posted on April 29, 2010 23:22