Cue the chorus
We just filed our taxes, and as usual, we’re getting a hefty refund. It’s so hard not to blow it all at once, especially since we do without so much the rest of the year. We’re trying to be responsible, though, and do things that really need to be done, like getting rid of the strange, brown mold that’s been slowly taking over the bathroom in our room. And replacing the dangerously cracked windshield on my car before it causes either an accident or large fine. But there are other things on the list as well, such as a trip to the kids’ favorite
indoor waterpark. And ink for the printer (I’m surprisingly excited about this). Hey, we have to splurge once in a while, or we’ll go nuts, right?
Birth of a file
I did something very sad today. I started a file for Owen. Reed already has a file, but I was hoping Owen would escape the plethora of appointments that necessitate such a move. Reed’s file is around 2 inches thick, and includes copies of all the testing he’s had, relevant information sheets to his diagnosis, personal information (social security card, birth certificate), and anything else that may come in handy at a doctor’s appointment or school meeting. It’s come in handy more times than I can count, and it goes with me everywhere. Since starting the file, doctors have taken me more seriously, and things get done much quicker. Office staff have praised me for my efficiency (the file is organized by category, allowing me to jump to any document at will). It feels good to be in control of
something.
I received the report from Owen’s speech therapist today. Since he will be starting ST next week, I decided it was time for him to have his own file. A place to stash referrals, reports, and the like. It was a sad decision. I am in mourning of the loss of his normalcy. I had hope, for a while, that he might be lucky and evade the life of chaos that plagues his brother.
The silver lining is that the therapist believes his stint in ST will be short. The report sums it up nicely: “should respond well to early intervention”. Hoo-Rah.
Selfish
No one should feel happy for a diagnosis about PDD. It is not the sort of thing that should inspire relief. And yet, I am more relieved than I can describe about Reed's diagnosis, but not for the reasons you'd think.
I have been feeling increasingly guilty about Reed's difficulties since he first started to exhibit these behaviors at around 2 ½ years old. I felt that I must be doing something terribly wrong for my sweet, perfect little angel to become such an angry, headstrong kid. I ran out of patience about 2 years ago, and have been running on empty since then. I couldn’t figure out where we went wrong, or how to help him.
First, came the diagnosis of ADHD. This came in the midst of a nightmarish year of pre-k in the local public school. Reed was acting out on a regular basis, even though he loved school and couldn’t bear to miss it. He was sent home repeatedly, and eventually the school threatened to suspend him if we couldn't get him to control himself better. In desperation, we scheduled an appointment with his pediatrician to discuss options. His teacher completed the Connor’s form (as did we), and the pediatrician took one look at it and sighed. While most doctors hesitate to diagnose ADHD in kids under 6, since many kids outgrow the “over-active” stage, he felt that Reed was definitely an exception to that. He commented on how high the score was (I can’t recall the number, but well over the range at which a child his age is considered ADHD), and offered options. Because of Reed’s aggressive tendencies, he recommended a combination of medication and behavioral therapy. We filled his prescription for Ritalin, and started searching for a therapist who would agree to work with a 4 year old (no small task, I assure you). This was both encouraging and discouraging at the same time. Reed had always been active, preferring to climb the furniture rather than sit and play with toys. Many people had mentioned hyperactivity before, but I always defended him (and still do). I still believe his activity and curiosity were absolutely normal for a child his age. He was not destructive or aggressive. He listened well, and enjoyed reading and puzzles. He was able to focus on an activity for an age-appropriate amount of time (which under 2 is not very long anyway). It was discouraging to have all those people proved right, after my adamant beliefs that he was developing normally. And yet, it was so nice to have an answer. To take a step forward, instead of backward. I had wild fantasies about getting my sweet little angel back. Fantasies in which I no longer had to lock the refrigerator at night, or scream at the top of my lungs for him to put down the scissors and step away from the cat (ok, this hasn’t actually happened yet, but it’s one of my fears, given his love of cutting things inappropriately). Suddenly I had hope, and that is always a good feeling.
But we saw little improvement. It took months to finally get him an appointment with a therapist, and by that time, my hope was fading. I had spent the greater part of the summer reading up on ADHD, and how to best work with kids who are wound a bit too tight. None of the suggestions seemed to make any difference at all with Reed. I felt like I was back to treading water, rather than the progress I had been hoping for. Therapy began, and I was
further disillusioned. If we were going to see change, it wouldn’t be any time soon.
After a few months of therapy, Reed was evaluated by one of the staff psychologists. She made mention of scary sounding conditions such as
ODD. This was not comforting in the least. It wasn’t until after a parent/teacher meeting that we found the key to Reed. Thanks to his fantastic teacher for picking up on the subtleties of his miniature neurosis (and I call them that with nothing but love). Up to that point, I had been having trouble connecting his outbursts and finding the pattern. She hit the nail on the head.
Reed needs routine. He needs things to be a certain way, and if they aren’t, he just can’t cope with it. I had always just believed he was a headstrong kid, who was used to being an only child and getting his way most of the time. It never occurred to me that he literally couldn’t handle changes, and that’s why he needed everything to be “my way or the highway.” The teacher mentioned a quirk he had concerning the classroom crayons. He has one particular set of crayons that he
must use every day. Since the class uses community crayon buckets, his crayons are not always together and they are not always on his table. He will seek out each and every one of his perfect set of crayons before he can begin, even if he doesn’t need all the colors. He cannot do any work until he has found all the crayons. This fixation on the crayons doesn’t make any sense to me. Crayons all look alike as far as I’m concerned, but to him, it is crucial to his daily routine. Should he fail to find even one of the colors, the rest of the day is usually a total wash, and he may as well come home right then (and often ends up doing so, as he gets sent home occasionally). No amount of redirection or reassuring will do, only those crayons. I mentioned this to his therapist, and you could practically see the light bulb above her head click on in a cartoonesque way. Oddly enough, those precious crayons were the key to understanding Reed. She began pulling out books on PDD, and started asking questions. By the end of the session, he had a diagnosis, and I again had my hope back. There was more we could do to help him. This was not caused by my parenting skills, or lack thereof. His brain is just wired differently, and we need to approach him from a different angle.
*sigh* It’s a rollercoaster just retelling it. And yet it feels so much better to finally admit it: I am glad my son has been diagnosed with PDD-NOS. I’m not glad he has it, but I’m glad we finally know it’s there. I can slowly feel my patience reserves filling back up. I believe I have been a better mother since the diagnosis, and that alone is progress. And it’s starting to pay off. Knowing how to approach the problem has made a world of difference. The tone in our house is completely different these past few months. Reed is making better eye contact. We’re settling into new routines that have him more relaxed and a lot more fun to be around. The destruction in our lives has been cut down to a minimum, and the stress levels are dropping faster than the temperatures here in Michigan this winter. I may not be seeing it quite yet, but I’m sensing that there may, actually,
be light at the end of this tunnel. And until I get there, I might just be able to enjoy the ride.
Hi Ho, Hi Ho, It's off to therapy we go
The Little One had his speech evaluation today. His receptive speech is at a 9-12 month level (which is bad, since he's almost 19 months old), and his expressive speech is at a 6-9 month level (see previous note about why this is bad). So he will be starting speech therapy in a few weeks. With any luck this will just be for a short time. Since we've been through speech therapy with Reed, the therapist suggested that we give it a try for a few weeks and see if it makes any difference. She can try a few different techniques, since I've already been employing all the tips they normally suggest with no improvement. If she can find a technique that works with him, she will show me what to do, if not, then it wasn't helping anyway. Either way, I'm not looking forward to the 30 mile-each-way drive to the office every week.
This is in addition to the Occupational Therapy Reed will be starting the following day. OT is often recommended for kids with PDD/ASD, and he is no exception. So we'll be off to Children's for weekly therapy sessions. Yay.
Anybody want to become my personal chauffeur? I don't think I can afford the gas anymore.
I LOVE my husband!
I know, I complain about him a lot, but I really do love my husband. He is more than I could have ever hoped to find in one person in my lifetime. He is caring, kind, and generous. He loves our children and isn’t afraid to say so. What’s not to love? I’m sure that if he ever reads this blog, he will be ever so hurt about all the whining I do about him, but it’s not really the way it looks.
See, he’s so great that I have trouble talking to him about the little things that bug me. Like the fact that he always throws his beer caps on the floor, and I always step on them barefooted in the dark. Or how he waits until we are going to bed to mention that he has no long john’s to wear to work the following day, instead of looking in his drawer when I asked 3 hours earlier. These are minor things. He does so much around here (he is Chief Mechanic, Master Handyman, Head Chef, Bringer of Bacon, and all that jazz), that it seems kind of petty to bring all the other stuff up. But it does bug me. And if I let it bug me too long, eventually it builds up into a not-so-little thing. So I prefer to vent about it here, where no one’s feelings can be hurt, because it really isn’t so important that I need to remind him every single time to throw his Q-tips in the trash, instead of on the desk, right?
Note to self: change address of blog before DH decides to read it.
Welcome back to Junior High!
I am feeling awkward lately. It's like being back in 7th grade all over again. I just don't seem to fit in anywhere. I thought I had reached a point in my life when I could find my place in the world, but lately I've doubted my own maturity.
I have special needs children. That sets me apart from most of the others in the online communities I belong to. I am currently a member of 2 online parenting message boards, and although I love the women I know there dearly, I feel so different from them, who go about their lives with little more thought for their children's futures than how much to put in the college fund this month, and whether their son/daughter will want Dora or Blue's Clues for the theme of their next birthday party. I spend most of every day contemplating the benefits of occupational therapy, and whether my youngest really needs speech therapy. I am among them, and they accept me, and support my struggles, but I am not really the same mother they are.
And yet, my children’s needs are not the same as other children with special needs. I know we are extremely fortunate that their needs are small. In the greater picture, they are a mere inconvenience. My oldest is Hard of Hearing. And yet, his hearing loss is merely a
Profound Unilateral loss. I don’t fit in with the parents of other Deaf and HH kids, because my son can hear. He can hear pretty well, as a matter of fact. There are a few situations in which he is a bit disadvantaged, sure, but we are aware of this, and can work around it. Again, the parents have been very kind, offering support and advice whenever they can, but I don’t really belong to their circle. Reed has recently been diagnosed with
PDD-NOS, but his is a mild case, from what I’ve been able to gather through my research into the disorder. To say he’s high functioning is almost an understatement. He needs more attention than I know how to give, and he is a bit uncomfortable in his own skin some days, but he’s mostly a normal 5 year old, who loves
riding his bike,
playing with his little brother and
going to Kindergarten. I do not fit in with the parents of those children who require months of work to look you in the eye (although he does have trouble with eye contact), or say your name. I most definitely do not fit in with those parents. My youngest has his own set of issues, mostly stemming from a sensory issue with food. He doesn’t like the feel of food, so he won’t eat it. You know how they say no child will voluntarily starve? Well, that’s not entirely true. Owen was losing weight, missing milestones, and just generally
failing to thrive. As evidence of the inexperience of the other moms with matters of this nature, everyone assured me “He’s going to be fine, he’s just burning it off quickly because he’s so active.” I wish I could believe them, but a trip to the pediatrician confirmed my fears. Owen was not growing. After a battery of tests, that included skull x-rays and MRI, it was determined that his poor eating was to blame. His poor body was working so hard just to keep functioning, that it had stopped growing altogether. Now that he’s getting his nutrition
supplemented, he’s make huge progress, including a 20% weight gain in the last 3 months alone. He’s making progress with milestones too, but is still somewhat delayed. He’s having his speech evaluated this week, and I’m a bit nervous. I shouldn’t be. Reed went through speech therapy, and it did wonders for him. It really shouldn’t be a big deal, but it’s just so hard to hear that your child isn’t “normal”. I desperately want to hear that he’s making great progress and will catch up on his own in time.
*sigh* What’s a girl to do? I’m open to suggestions if you have any. I never did figure this out back in Junior High, and I’m not making much progress at it this time around either.
I don't remember signing up to be the bottom of the totem.
Okay, this particular time isn't his fault, but why is it that every time I'm not feeling my best, my husband has a million other things that require his attention over me? When he's got so much as a bruise, he sits delicately and can't be bothered to do such menial tasks as changing diapers, bathing kids, or putting anybody to bed. The slightest elevation in the noise level in the house is cause for moaning and whining about how he doesn't feel well and can't get any rest. Never mind the fact that I deal with the yelling, screaming, whining, and general chaos all day long without a break. I'm not asking him to supervise the kids indefinitely when he's under the weather, but I could do without the sob story every time I hand off the baby to take a piss. Most days I'm up by 6 am, and don't get a break from the kids until Reed is asleep, which doesn't usually happen until close to 10 pm. Even when I'm sick. Last week I had the flu. And yet, I changed diapers, fed both kids, crawled around on the floor playing Hot Wheels, washed laundry, ran the dishwasher, and did a host of other chores, without so much as a trip to the bathroom by myself. 4 days later, Heath caught my flu. He alternated between sitting in front of the computer, and laying in bed watching TV, while I still fed, bathed, washed, etc, etc. You get the picture. I don't think he's been near the changing table in 2 weeks, at least. Now I'm coming down with it again, but do I get to sit and put my feet up? No. I realize that his mom is in the hospital. I realize he's completely drained from seeing her in this condition, and I haven't asked him to do anything for just that reason. It just feels so unfair that it's always
something when it should be my turn to be babied. Last night, I sat up with Reed so that Heath could rest downstairs. Did he thank me? No, instead he griped and complained about not being able to go to bed until I came downstairs. You're
oh so welcome. (::note the sarcasm::)
I'm blowin' this Popsicle stand!
Heath and I are off tomorrow afternoon for a romantic (ha!) getaway to an
indoor waterpark. We are, at least, signed up for the "
Romantic Getaway" package. But I doubt we'll spend much time together being romantic,
Oh well, 36 continuous hours without children is as close as I can hope for to paradise this year. Despite my cynicism, I am really looking forward to getting away and having some fun with Heath. His mom's current illness has been draining Heath like I've never seen him before. I'm hoping that he can relax a bit and enjoy himself before he drives himself too crazy over this whole situation. Although he hasn't said so, I suspect that this is the motivation behind changing our reservations from the
bed and breakfast we had originally chosen to the waterpark. He needs to be busy to get away from his sadness, and that's completely understandable.
Hopefully I'll be a little less cranky when I return.
Yes, I am a pushover. What of it?
First off, let me apologize for being a bad blogger of late. I haven't posted in months, and for that I am sorry. Unfortunately, I don't get much
me-time, and when I do, I prefer to spend it on other things, like
bathing for example.
Now, on to your regularly scheduled bitching.
I'm beginning to suspect I have no one to blame but myself (and possibly dh) for Reed's opinion that he is the
center of the universe. We spoil that kid like nobody's business. Just 2 days after Christmas, Daddy bought him another
train set to increase his collection. 2 days later, I bought him yet more
pieces for it. It's so hard not to buy them, when he enjoys them so much. The look of
joy on his face when he plays with his train setup is priceless, and I just can't bring myself to deny him that happiness. So sue me! To my credit, when he's playing with his trains, he's quiet, still and well-behaved. How could I not want that to last as long as possible?
