If We Were Having Coffee …

Weekend Coffee

This post is part of a link-up hosted by Part Time Monster

If we were having coffee this Saturday morning …

First of all, I would apologize for being slow this morning. I went out with some mom friends last night, and we had a great time talking and drinking, but I’m paying for it this morning. I’m on my second cup of coffee this morning and finally am starting to feel like I’m waking up. My fingers definitely aren’t dancing like they usually do today.

We had a rough week with Cassatt’s asthma. He was coughing some last weekend but I just thought it was allergies and didn’t think much of it. I’m still not used to asthma (although I think it’s something I’m going to have to understand more as a mother of a preemie). On Monday he was coughing in the car on the way to school, and the nurse gave him a breathing treatment when he got there. I gave him another one when he got home. Two hours later, we were at my doctor’s appointment and they sent him straight across the hall to the pediatrician. (They’re in the same building.) He’s been on steroids ever since, but at least he seems to be better now.

I had a meeting yesterday with someone who does medication research. He has several ADHD studies going on right now that sound pretty exciting, I’ll be glad to promote them to CHADD members. The meeting ended on a frustrating note, though, because I’d locked my keys in the car. I had to call the police to come get them out; fortunately they were nice about it.

My other exciting news this weekend is that I won tickets to go see the Mythbusters tour. Hubs is taking Picasso tonight, and I think they will love it. I’m a little bit jealous, but I think they’ll get more out of it than I would. It goes past Picasso’s bedtime though, so I hope he’s not a bear tomorrow.

And with that, I feel like I’ve finally woken up. I hope you have a great week! Do you have anything exciting planned?

And the journey begins …

cc Ian Britton

Or maybe it’s just a new chapter in the journey.  Yeah, probably that.

I had a word dumped on me this week that leaves me shaken.  A word about my child that I didn’t expect to hear, certainly not in the conversation we were having.  A word that describes my child’s school’s understanding of him, which does not mesh with my understanding.

Autism.

How long?  How long have they thought he had autism?  Yes, I know he is different.  I know his behavior sets him apart. I had always thought–assumed–believed–it was ADHD.  Maybe severe ADHD.  But ADHD is a diagnosis I can handle. I can talk about ADHD.  I can understand ADHD.  I can handle ADHD so well that I’m the coordinator of our CHADD chapter.  No, ADHD doesn’t explain all of his struggles, but it is a start.

But autism?  That’s a whole different monster.

The guilt sets in.  Early detection and intervention is important.  It is key to living a good life, right?  To being able to function in a mainstream class, to not being so different that he can’t function in the world.  But this is not early detection.  He is five — FIVE, almost six.  And the doctors said when he was 2 that he doesn’t have autism.

But they also knew something was wrong.  And he’s been getting therapy for the past 4 1/2 years.

How long have they known?  How long have they been hiding this from me?  I feel betrayed.  I had thought we were on the same page, and it turns out we were not. At all.  They could hide behind words like “young child with a developmental delay.”  They could evaluate and not diagnose.  Because he is a young child and he has a developmental delay.

She used it so casually, as if it was something everybody accepted about him already.  It isn’t as a bad thing.  It just is.  She had no idea that the word–and its implications–were not put on him at home.

A diagnosis is not merely a set of symptoms.  A diagnosis is a word, a word that can change a viewpoint.

No wonder they were so impressed with how he behaves at school.  They have given him a word, and with it the expectations that follow from that word.  He is succeeding because he does not fall to those expectations.

 

What do I need to know to get an IEP? Part 1: Evaluations

IEP SchoolI’ve heard about an IEP and been told my child could benefit from one. But what is an IEP?  How do I get one for my child?

Your child is struggling in school, and as much as you try to help him, he keeps falling further behind.  Maybe the problem is grades.  Or maybe his grades are fine but his behavior is a problem.  Perhaps he is struggling socially.  At any rate, you sense that your child needs more help than he is getting at school. More

Mother May I

While we were camping this weekend, I got used to hearing the phrase “I’m bored.”  Daddy and I were frequently doing camping chores, and Picasso had trouble finding something to occupy himself with.  We’re not used to hearing that phrase at home; Picasso can usually find something to do here.  Whether it’s his usual toys–trains, legos, blocks–or a worksheet.  If all else fails, he’ll ask to watch TV.  None of those were options in the State Park.

I did try to get him into nature.  There was poison ivy near our campsite, though, so I was afraid to let him gather sticks from behind our site.  He wasn’t interested in gathering small sticks to build a fairy house, although he was very interested in hearing about, and looking for, fairies.   I had forgotten jars to make bug jars, and he was afraid of most of the bugs anyway.

One thing he did love was playing Mother May I. This is an old game where a leader gives players instructions and the goal is to reach the finish line first.  The trick is, after an instruction, the player asks the leader “Mother May I?” and the leader gives the player permission to move (or not).  If the player forgets to ask “Mother May I” then they have to go back to the start.  I think it’s a rather boring game, actually, but Picasso loved it.  After we played for a while, he wanted to play “Picasso May I”.  He had a great time denying me permission to move or sending me back to the start line.  He tried to get Cassatt to play as well, but he is just 3 and didn’t understand the directions.

I realized this is a good game to help with his impulsiveness, as well.  Picasso had a very hard time remembering to say “Mother May I” after I gave a direction, and he stayed at the start for a long time.  Daddy had to coach him so that he could move forward.  Even with that, though, he enjoyed the game!

 

ADHD and CHADD

Our St. Louis chapter of CHADD (Children and Adults with ADHD) met last night and started discussing plans for next year.  Unless someone else steps up, it looks like I will be coordinator next year.

I tend to shy away from coordinator roles, preferring to work in the sidelines.  I am comfortable serving as secretary or treasurer of an organization, but have never been a coordinator before.  The group is sort of languishing and searching for a purpose.  I feel like the most important thing I can do for the organization is to develop goals and a clear mission for it and to work toward these goals.  We are working now to get more volunteers, but I think if we provide more service then the people will come.

 

You are More than a Diagnosis

Receiving the DiagnosisI have friends who recently received devastating diagnoses.  One learned from the doctor that she has lupus.  Another received a school evaluation that stated her daughter has autism.

In the moment you receive that diagnosis, something changes.

It is hard to forget, at that moment, that you* are more than your diagnosis.

You are the same person who you were yesterday.  Anything you were capable of doing yesterday, you are capable of doing today.

Yes, there are more limits, more restrictions on what you can do.  They may be dietary or physical restrictions, but these restrictions do not change who you are.  It does not change your personality, the friend you are, the parent you are, the child he is.  It does not have the power to make you any less of a person.

The diagnosis does not define you.  It describes your health.  It is not you, merely a new way to describe something that, deep down, you knew already.

It is hard when the world recognizes what you have tried to deny for so long.  There is a loss.  Grieving is part of receiving the diagnosis.  But don’t let that grief turn into depression.  Don’t let that grief turn you into something that you otherwise are not.  Take the time you need to process what this diagnosis means for your life, because yes, the diagnosis is life-changing.  It is not a cold, where everything will be “normal” in a few days.  You are facing a new normal, new restrictions, new medical procedures.

But you are still you.  Don’t let go of that.

*  If you are reading this and a diagnosis is about a child, a parent, or someone else you love, please take liberties when reading this.  Your child is more than her diagnosis.  Your father is more than his diagnosis.  Language structure prevents me from encompassing everyone in this support, so I just type “you.”

Choosing your Battles

One of the best pieces of parenting advice I have heard is to “choose your battles.”

But when does choosing your battles end up in spoiling a child?

I recently wrote about nighttime parenting, and how I allow my kids to sleep in our bed sometimes.  Many experts would tell me to take the children back to bed every time they come into our bed.  However, they are usually awake enough to fight me if I take them back to bed–and they have more fight in them than I do at that hour.  Still, sometimes I wonder, is it spoiling them to allow them to sleep in my bed at night?

Another battle I choose to avoid is the battle over cup color.  We have a set of cups the kids drink from every day.  Cassatt doesn’t care what color he gets, but Picasso throws a fit if he does not get the green cup.  We have enough green cups, so I always give him the green cup to avoid a fight.

But as a parent, sometimes I wonder if this is OK.  More specifically, I wonder how I can increase his tolerance for frustration and for change.  Picasso has some developmental delays, and handling frustration is one of them.  I hope this will get better as his language skills develop, and he does seem to handle frustration better than he used to.  Last night when I accidentally gave him the blue cup, he told me I had them wrong rather than having a fit.  I’m sure he would have had a fit if I hadn’t switched the cups, but we managed to avoid a meltdown over my mistake.

Maybe there is hope after all.

 

Life’s Bookmarks

Book with post-it notesPeople are only given so many bookmarks in life.

They can be reused, but only so many can be used at one time.

By “bookmark” I mean the ability to keep your place in tasks when your attention is diverted elsewhere.  You have to put a bookmark in that place, otherwise it is serious work to find your place back there.

For example, when you’re cooking dinner, there might be a bookmark on the pot of rice and on the beans while you are chopping vegetables for a salad.  When you finish chopping vegetables, you go back to stir the beans.  There is also a bookmark on the kids, because you have to be attentive to what they are doing at the same time.

People with ADHD have fewer bookmarks.  They lose their place easier, and it takes more effort for them to return to what they were doing.

This morning, I put a bookmark on making coffee and emptying the dishwasher (both of which I intended to do, in that order) while I started making toast.  The bookmark on making coffee didn’t stick, so when the toast was in the toaster, I started emptying the dishwasher.  After a few dishes I remembered I was going to take out the coffeepot and make coffee, but it took more effort to remember that.  It was not queued up for me, bookmarked for me to remember effortlessly.  I put a bookmark on the dishwasher, made coffee, and returned to the dishwasher when I finished.  Then that bookmark was free to use elsewhere.

Being a parent takes bookmarks.  You have to keep track of where the kids are and what they are doing.  If you lose that bookmark, you don’t notice that it’s “too quiet” until the mess is ginormous.  But using the bookmark on the kids takes away from the bookmarks you can use for other things (writing e-mails, emptying the dishwasher, etc.)

Do you notice your bookmarks? Do you have lots of bookmarks, or do you wish you had more?

What’s on my menu?

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