May 22, 2013


Some days I get in a funk and little things will set me off.  Like the article in Parenting about how to raise your boy to be a man.  What I really need is Special Needs Parenting with articles about how to rock a PPT without pissing off your child's future teacher.  Or how to prepare your typical children for a lifetime of keeping an eye on their brother. 

But then I kick off my woe-is-me underoos and try to have a little fun (and if I can fill the fridge up at the same time - even better).

what her hair looks like when I am too lazy to pull it back

we all love Clover the cow... and ice cream before dinner

My buddy got his assignment for the last Family Project for school.  Ask your child what he likes most about school and draw a picture of that.  I will give it a try, but we may "forget" to hand in our last home project.

Monkey bear has sprouted all of a sudden.  She has long, gangly legs with knobby knees that look as awkward as a 9 year old.  Maybe there is an awkward phase that hits at 6 as well.

Rara has mastered sitting up from lying down.  Only took her 11 months.  She used to just lie there like a bump on a log until you sat her up.  She currently is working on pulling herself up to stand.  She practices every chance she gets.

May 13, 2013


My buddy was recently diagnosed with Childhood Apraxia of Speech.  It's really not a surprise.  I requested that he be tested because I had a feeling something more than just Down syndrome was going on.  Apraxia of Speech is a disorder where the child - for unknown reasons - has a really difficult time getting their mouth and voice coordinated for intelligible speech. 

Every diagnosis sends me into a special needs spiral.  He is going to have a hard enough time with intelligible speech without apraxia.  Will he ever talk?  How can he make meaningful friendships if he can't communicate?  How many years of frustration will this bring us?

Then I see my 10 month old who can mimic my sounds, switching from ma to da to ra without a problem.  She is a month or two away from passing him out in the speech department.  I knew the day would come, but I didn't imagine it would be here this soon. 

I'm not the only one stomping my foot at the unfairness of it all.  Monkey bear sees my buddy getting a new chair and wants a new chair for her.  What she can't see is an almost 5 year old who can't sit in a regular chair at the table.  Who has to be strapped in with a place to put his feet so they don't turn purple.

But once the foot stomping is done, there is always the light at the end of the tunnel.  He does have some words - one of which is Mama.  Maybe this diagnosis will help us find an alternative communication device that he loves and he will be able to tell us so many things he couldn't before, even if it won't be in his own voice, it will be his words.

May 8, 2013


My buddy is all healed from the tonsillectomy and there has been a surprising end result.  He is eating everything.  There were foods before that my buddy wouldn't eat.  Or he might try them and then spit them out without swallowing.  Since he healed, the food is just disappearing.  I am so excited and I just keep throwing new foods at him.

Next week I have kindergarten registration for my buddy.  Then at the end of the month we will have our transition meeting and set up a new IEP.  It doesn't seem real.  How is he old enough to be a kindergartener?  I meet with his current speech teacher who has tested him for apraxia.  She is  going to review the results with me this week before we start the transition process.  I am curious to hear what she has to say.

Whenever I have doubts about my buddy and how he will fit in with his classmates, I am reminded just how likeable he is.  There is a little girl that has been in his preK class for 2 years now.  She is very timid and afraid in new situations and of new people, but she loves my buddy.  We wait outside for the teachers to come and open the door and every day when they see each other, they shout each others name and hug.  Then they spend their time jumping and laughing.

I know there will be children in kindergarten that will be uneasy with my buddy because he doesn't talk and can't do some of the things they can.  I also know there will be children who embrace him for who he is.