Anger ticks me off

People have said I have a short fuse on occasion [you can't find those people anymore- 'nuff said ;-] ...I'm working on it, GEEZ PEOPLE!  My worst moments- and I hope I am not alone in this- are when I stub my toe or hit my thumb with something; man I think I even curse in several dead languages. Then I get more angry because I'm angry. I know...its a character flaw for which I, unfortunately, have no excuse. One effect of Fetal Alcohol Syndrome is a quick temper which- much like my weight- you have to manage the rest of your life. Dakota can get angry very quickly and interestingly it is the most pronounced when he gets hurt. He also gets angry when he is frustrated by something such as when people don't understand what he is talking about. We have not been able to figure out if he is more angry with himself or the people he is talking to- he can't explain it to us, but he has always been this way. The good news is he is over it very quickly, almost as though it never happened. I remember the first time I met Dakota. His social worker told me about this and said that if you distracted him from his anger or frustration he was over it in a second. Almost on cue he got furious over his blocks falling on his foot and she showed him her sunglasses- shazaam, it was done. I don't know if that part is also true of FAS (maybe some of you know) or an effect of ADD. Whichever it is we are trying to teach him better ways of dealing with it when he gets angry. He has made progress because he doesn't lash out the way he did as a toddler so something is working. Now maybe I can work on myself- perhaps twirling shiny objects in front of my eyes...

Alone again naturally

Dakota was taken from his biological mother when he was around 2; then he lived with a foster family until he came to live with us. While with his- I'll call her bio-mom (though that sounds like the $6 Million Dollar Man or hazardous waste)- he was left alone a lot. She wouldn't take him out of his crib except to feed him for his first 6 months; his first 3 months he was on his back in his crib so much that there was an indention in his head that took a long time to go away. After this great beginning he lived in a car for a while. Naturally he did not develop physically, neurologically or socially. One of many consequences of that is Dakota does not like to be alone. For the first three years we had him it was like living with Elvis (the later Elvis when he started taking drugs and Little Debbie snack cakes): if he was awake, everybody was going to be awake; if he was in a room, everybody needed to be in the same room. He is able to spend short periods by himself now but he doesn't like it much. Bed time continues to be a difficult time though not as traumatic for him- but still frustrating for us. He does not like to sleep because that means he will be alone so though we start the going to bed process at 8:30, he is still awake at 10:00 calling down to see if we're awake or ask "Can I tell you something" questions. Every night its the same fight to put him to bed, read a story, lay with him a minute then leave him there knowing in a few minutes he'll be up saying he's scared or can't sleep. And when he does fall asleep, somewhere in the night he is downstairs coming in to sleep with us, which means someone is off to the couch or to sleep in his bed instead of him. I haven't had a full night's sleep in my own bed in years...of course he sleeps like a baby! We try to remind ourselves why he does this and we take turns with the night time ritual but it can be very tiring- well for everybody but him apparently. The concept of "alone time" is lost on Dakota- I guess he had enough of that. 

Stay just a little bit longer

When Dakota came to live with us he was 3 and I was 43. That was 6 years ago-if you do the math the answer is now he's 9 and I'm... tired all the time. We knew he had what they then referred to as "developmental delays". Though I scratched my head and wondered if the person who comes up with these names is a traffic reporter, I figured I understood what it meant: He would be a little later in potty training; he would start kindergarten a year or two past the other kids; maybe even that (God willing) puberty would be delayed, thus pushing it past when I would enter menopause so one of us wouldn't have to die from that dangerous combination. As time went on I began to realize "developmental delay" meant only that they didn't have a category for the havoc and wreckage his biological mother's prenatal drinking and drugs left behind in this fragile little boy's brain. It was a clinical way of saying 'we have no idea what you should expect'- which in the end, I believe, is true for whatever they call the affliction a child with special needs has. There is no word or description to convey that this means years of constant working on the basics of life like dressing and eating, plus the extra work to learn the alphabet or colors or where you live. Dakota can tell you he lives in Oklahoma but not his address or birthday or spell my name. I cannot tell you how hard it was to let him go somewhere with others knowing he could not tell someone who he was or where he lived. He knows my phone number now and if he goes slowly he can spell his last name, so my anxiety is much less. We just try to make a game of repeating our address hoping someday it will click and fearing it never will. No one can tell us how far Dakota will ever progress, so every time he learns something new we wonder if this is as far as he will ever get. Will he have the mental capacity of a 5 year old forever or will he make it to 12 or 15 or 20? One thing's for sure: Dakota is going to be at home a long time...and we'll be there for him always.

Won't you be my neighbor

I know you've heard "It takes a village to raise a child" which may or may not be true, but it certainly takes a neighborhood to keep them busy! I have the best neighbors in the world for this; in fact rather than move to a bigger house when we got Dakota, we added a second floor to the one we had so we could stay in the same neighborhood.  You can always find a good house but you can't buy great neighbors- though you can rent mine if you're desperate! From the minute Dakota came to our street he has been treated like a prince. They accept his limitations but at the same time try not to treat him differently. Thats an important distinction and not always easy for people to do even though they want to. We have a neighbor named Christie who Dakota adores. From the first time they met he tried to be like her and dress like her and Christie took it all in stride. In fact too far- she brings him stuff thats like hers or matches...its like a little Christie mini-me. She even bought him little OU clothes- the dog! I bring all this up to say that Christie epitomizes what I think all people with disabilities and their families want from everybody else- acceptance. She doesn't treat him like an idiot but she doesn't demand the world of him either. She just lets him be what he is and is happy with that- and she calls him a goof ball when he has it coming. What a neighbor.

Hot town summer in the city

Summer is a mixed blessing for me. There's a break from the run around routine in the morning to get Dakota ready for school; but, there's the problem of making sure that he doesn't lose any progress he's made during the school year. Homework during the school year is bad enough: when will he be able to focus best, keeping some kind of structured schedule for him so that he knows what to expect in what order at what time of day, when will I have the most patience so I can keep pulling him back to what he is supposed to be doing and on and on. Now don't get me wrong I understand the ADD thing- I have the attention span of wheat toast most of the time  *Note- here is where I insert the usual disclaimer: I love my child and would not trade or change him for the world...* but a child with fetal alcohol syndrome, ADHD, auditory processing difficulties, etc can sometimes make you wish there was a stress patch like the one for nicotine (I think they used to call those mother's little helpers).  We have to continuously search for new mediums that will help him learn. He writes the words on dry erase; constructs them out of syllable cards we make for the words; we have had him write them out with his finger in a pile of sugar or flour on a tray so he could have the tactile sense of the word to help him remember; his tutor made little phone looking things out of pvc so he could hear himself when he says the words or spells them. And all of these work but there's a lot for him to do there; its frustrating for all of us. Its often very hard to know how hard to push him- what can he truly not do and what does he just not want to do, and of course its summer and he has better things to do! To make things worse its 105 degrees here and my patience level goes down as the temp goes up. It's a cruel,cruel summer.

Well it was just his imagination...

Dakota has -among other things- an auditory processing problem. This means what he hears doesn't make it to his brain without being scrambled; which means he cannot repeat it back to you the same way he or you heard it (of course the same can be said about almost all the politicians in Oklahoma). One of the ways this manifests itself is that he cannot process words of more than two syllables very well, more than three - forget it. Fortunately he has a great imagination and, like most kids with disabilites he makes ways for himself to adapt. For example, he has always been fascinated with lightning and electricity but has never been able to say 'e-lec-tri-ci-ty' (5 whole syllables). But he associates it with lights so he calls it 'lightricity'. You can also see him trying to compensate when you say something he doesn't understand - either the words or the concept. He will repeat what you said but not out loud. He will form the last 3 or 4 words as he tries to slow down what you said and run it a second time for his brain. For awhile every time we went somewhere he would bring his slippers. I aksed him about this- and the following is absolutely verbatim: "Why do you always bring your slippers? They're my case shoes. Your case shoes? Yes, case something happens to my nuther ones." Who's on first?

What do I want for him

I have heard almost everyone I know who has children say some variation of the following: "I just hope my kid can get into college and get a good job." Not an unreasonable goal. If your child has special needs your desires are much simpler- I just want my kid to be able to take care of himself and be a good person. Now you may ask why I didn't include "be happy" in there. First, its been my experience that most kids with disabilities are pretty happy- they don't know they shouldn't be. Second, if Dakota can do the first two, I think being happy will take care of itself (not bad advice for me either). I must admit lately I worry about him being able to take care of himself. For some reason he has become fascinated with America's Funniest Videos- and there are very rarely any people on there who have the sense not to try to eat rocks! I mean the tag line for the show is basically "Here- hold my beer I wanna try somethin".

Other people worry about their kids getting their license, or getting on the little league team or in the band. I just worry about what will happen to Dakota if I die. And thats not because I don't have an ego or I'm a deeper person -and I know other people worry about it too. Its because I-and other parents of children with special needs-have to worry about it. Because its not as easy as knowing your parents or a close friend will take your child if/when you die. Who has the time, the resources, the patience, the commitment - the amount of love for your child it requires to take on the task of a child with disabilities? I worry about it every day and it scares me just as much every day.

A "disorder" by any other name

For some reason we are all obsessed with labels. We feel better about something if we can give it a name- it seems more important. I mean, don't you feel less guilty about feeling awful if the doctor calls it something? "Oh yes, you have 'Who the heck knows fever- very bad." Well then your boss says to stay home and your friends/family pour on the soup and sympathy for the "poor thing". And how embarrassing would it be for my family if I died of nothing. I can hear the whispers now "Who dies of nothing? What the heck kind of freak was she?" Its not any different for a diagnosis of kids with disabilities. At first we want to know because we wonder if its our fault; then we want a name because if it has a name then surely someone can fix it; then we need the label so we know what to expect; and finally if we call it some disorder or syndrome people will understand why my kid acts the way he does and its not just bad parenting or that my child is stupid. It takes a long time to get past that last one- I'm not fully there yet. I'm learning that I don't have to explain or excuse him- he re-teaches me that everyday. He just lives and he doesn't know the names of these disabilities or most of what he sees in the world- heck he can only master basic two syllable words at this point. And you know what? That hasn't slowed down his enjoyment of life one bit.

Can I tell you something?

Hello all. This is the start of my blog story about raising a child with special needs. Dakota is my son and he came to live with us six years ago. We've been told alternately he has Fetal Alcohol Syndrome, Autism Spectrum Disorder, brain damage or that he's plain old mentally retarded. Dakota is nine and believe me having special needs doesn't make him any less nine! Well, actually at this point he's about as developed mentally and socially as a 5 year old. Which means he wants to make you laugh all the time and so if he does something once and you laugh then he should do it again and you'll still laugh...and he should do it for the 755th time in a row and you should still laugh. Ever hear a child when they first start to tell Knock Knock jokes? First its the same one 25 times..Knock, Knock? Who's there? Boo. Boo Who? You don't have to cry about it (hysterical laughter)...Knock, Knock, etc. (just as hysterical laughter)...Knock, Knock (hysterical laughter followed by the sound of my head hitting the wall repeatedly followed by hysterical laughter). Then they make up knock knocks with no sense "Knock, knock. Who's there? Table. Table who? Table and a blue chair" (hysterical laughter followed by the unstopping of a wine bottle- you figure out which of us is doing what). Now throw in Dakota's need to be noticed and his compulsive behavior and you can imagine that some days you reach a point where the actual sound of knocking makes you run screaming into the street! The really funny/ironic part of that is that when Dakota first came to live with us- we adopted him when he was three- he could barely speak and we wondered/prayed/dreamed that someday he could make words and sentences; now we wonder when he will stop talking! His absolute favorite sentence is "Can I tell you something?".  I have learned that though it may seem best to answer no, it makes no difference. His question is more like an intro rather than asking permission. But I've also learned that HE's learning compassion, patience and selflessness from me whether I like it or not.  Can I tell you something? Raising Dakota is hard work.