funk

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.

apraxia

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.

suprise

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.

random

So much has been going on lately and I've wanted to sit down and write several times, but I just haven't found the time.  Now I feel like I don't even know where to start.  We sold our house... then we didn't sell our house.  Frustrating.

Rara is 10 months old.  She still nurses about 4 times a night.  She won't drink out of a cup or bottle.  She has no teeth.  She won't crawl.  She refuses to roll over.  She won't let anyone other than me or Daddy hold her.  All these things are little, but after having special needs enter my life, I worry.  I hate that I look at her under this microscope.  That being said, she has the best laugh I've every heard.

Monkey bear is back into missing Mommy.  She was crying and saying how she wished she was a baby so she could get more attention.  Broke my little heart.  We had a hot date over the weekend and this is vacation week, so I hope to fill up her Mommy bucket with lots of attention and love. 

My buddy had his tonsils out last week.  He's recovering well and back to his old trouble making self - with a side of exhaustion.  A thought popped into my mind the other day and I just can't shake it.  I was imagining my buddy as an adult wondering what he would be able to understand.  Will I ever really think of him as an adult?  Will I want him watching rated R movies?  Will I be able to have adult conversations with him?  Will I have to parent him always?  Why is the unknown such a hard thing to handle?

embarassed

My buddy was very sick recently and while he is feeling much better, there is still something going on with him.  I'm not sure if it is post-sickness I am no longer getting everything I want or if he is still tired or something else.  Whatever the reason, he is now throwing himself down on the ground kicking and screaming when life doesn't go his way.

It was so bad after speech therapy that his therapist handed me a card for a behaviorist that will come to your house.  I left speech with Rara in one arm, dragging/carrying a flailing screaming boy with the other arm. 

When we went to pick up my buddy's new glasses, I had to hold him on the ground in full restraint so they could be fitted a little to his face. 

I hate it.  It is embarrassing and frustrating.  I find myself looking at the ground with my cheeks flushed and my pulse racing.  I want to tell anyone nearby that he usually isn't like this - really he is a sweet boy. 

It's not the first time that my buddy has gotten this way.  It happens from time to time and it eventually passes.  I would be lying if I said it didn't take its toll on me.  It's like playing with a timer and you never know when it will go off. 

*****

Not to change the subject, but monkey bears grasp on Down syndrome always makes me laugh.  A friend's little brother came to class one day with his mom to help out.  Monkey bear said, "Even though he is only 3, he sat nicely and could talk.  I don't think he has any Down syndrome."  I love that the norm for her is to have a brother with Down syndrome who acts in crazy ways.  In monkey bear's little world, having a typical brother is unimaginable. 

giving back

When my buddy was born, I didn't know anyone who had a child with Down syndrome.  I didn't have a smart phone or even a laptop at the hospital with me.  I was desperate for any information and my pleas were answered in the most perfect way.

Michael's colleague had a daughter with Down syndrome and his wife called me.  She was so amazing - because she had been there and was far out of that dark tunnel and knew that life loving a child with Ds was wonderful. 

She was so patient with me, just talking while I blubbered on the other end barely able to keep it together.  I can remember holding my buddy and caressing his face while she told me it was OK to grieve for the loss of who I thought he was going to be.  She assured me that I would love this life with him in it.  She talked about how excited she gets when she hears that someone had a baby with Ds. 

She just had all the right words.  I thanked her once for being there for me - of course I started crying but it happens to the best of us.

I got the call I have been waiting for the other night.  An old friend just had a baby and surprise, he has Down syndrome.  She facebook messaged me and I sent her my phone number and we talked right away.  It felt so good to be the one on the other end of the phone.  (and she sounded just like she did in High School - the last time we talked)

I can remember every emotion from my buddy's birth.  But I also remember every time he drops what he is doing just to come over to me because he needs to give me a hug and a kiss. I know how proud of him I am.  I have seen all that he can accomplish.  I see how his peers want to play with him and don't care that he can't talk back to them. 

I really hope I was able to help my friend and reassure her that life with her son will be exactly how it is supposed to be.  She may have lost that imagined son, but she has gained so much more. 

music

I love the yin and yang of life.  Every time I feel like my buddy isn't making significant progress, he goes and proves me wrong.  We signed up for a music therapy class through the CT Down syndrome Congress.  Wouldn't you know, my buddy was a model student.

He sat.  That deserves its own special recognition.  He sat.  For the whole hour long class.  He followed directions - playing the instrument quietly, fast, high, etc.  He answered questions.  He danced, spun and drummed when appropriate.  My buddy could not have done any better.  I was able to attend the class with all three kids and not be stressed when we left. 

I love being able to see him progress and mature.  While I am still secretly petrified about my buddy starting Kindergarten in the fall, I will try and not think of that now and just celebrate how awesome he was today.