Speech revisited

I have only heard my son say a random few words one time, and then never again over the course of these 27 months. Andy started speech therapy two months ago, and I have to say it's been the most productive of all the therapies so far. he still isn't talking, but is becoming more vocal, and is making more attempts to communicate with me.

Today my son cried and murmured to my husband what sounded like "I want mama". It finally makes me feel like I am doing something right.

Confused about more children or not

I was very sure that I didn't want to have any more kids, but lately I have been having second thoughts. I keep thinking if I have another one, maybe they will be normal like my daughter. My son has brain abnormalities for unknown reasons. Nothing genetic has been found. I've been seeing other mothers with special needs kids having babies, and it just makes me think, "am I really done"?

I won't know for another couple years I guess. If Andy starts to walk and talk, I could change my mind. If he doesn't, I will probably close the doors on it for good. I just can't see having an infant around, when I've got to still carry him around. And besides, I HATE being pregnant so much. It is terrible miserable torture for me, which makes me think I am out of my mind for even considering such a thought.

I think it comes down to regret, right now. Will I regret not having any more. If I had another one, in an even worse scenario than Andy, I know I would regret that too. I probably should just count my blessings and be happy with what I have, I guess...

Rough patch

Things have been pretty rough lately. I find myself just trying hard to get through each day. I play Farmville on Facebook to keep myself from worrying so much about Andy. It actually works well. I play while Andy is asleep. I find myself just trying to get through these days, and hopefully I'll come up for air soon and he will be doing something new. Andy is extra irritable lately, possibly due to a molar tooth coming in.

He moves around backwards a little bit in the gait trainer, but I think he gets bored in it. I am trying hard to have his AFOs on his feet anytime they are touching the floor, which means sitting in a chair too. He doesn't care for me putting them on.

The eye patching hasn't been happening a lot lately because he is SO irritable already. Why add to the irritation?

Appointment managing for Andy lately has been tough too. I find myself dreading scheduling some of the visits. There are so many to keep track of. Lately I feel like all we are doing is going to appointments.  It just feels like no fun.

We have the gait trainer

Andy's gait trainer has arrived a month later than promised, but it is here. He isn't doing very well in it, so it has been depressing. I try to put him in it two to three times a day, usually ten to twenty minutes at a time. At least he will let me put him in it without fighting and fussing. He will stand straight up 5 percent of the time, and maybe bounce a little. I guess I am not expecting to see steps for a few months.

How much therapy does he really need?

We just had a two week break from therapy visits due to a change in insurance, and I have to admit, it was so nice. We are currently going once a week for physical therapy and speech therapy, and I wonder if PT could be cut down to twice a month. I work with him every day, and soak up everything they tell me, then put it to use. His therapy is currently a 30 minute drive, and by the time we get there Andy is melting down. DVDs arent working, music, toys, he's pissed when we get there. The facility that is ten minutes from us has a long waiting list right now, so that's why we are venturing out further. I am just not sure, but my gut feeling is that Andy would still benefit from going in twice a month. All the visits are just taking their toll on me.

Bouncing around the stages of grief

I am most definitely in the grieving process. I can see that now. When I first heard that when you have a child with special needs, you need to let yourself grieve, I thought "what would I be grieving"? For me, I am grieving the loss of a normally functioning child, because realistically that is what I thought I had. Then, all that was taken from me when the normal developmental milestones were not occurring. I was in the denial stage for a few months, probably from when he was 9 months old, until he was 14 months old. Because he was 11 months old when I took him tom the neurologist, so I somewhat was accepting that something was wrong. At 18 months old, scheduling the MRI showed the denial was over. The anger lasted for a year, and I still tend to revisit the anger. The depression is still hanging around, although some days I am feeling very accepting of everything in my and Andy's life.

Today I feel accepting of the fact that my son is very impaired, and will require special schooling. When I give up the hope that he will attend a normal school, it seems to help me be less sad. Constantly hoping for things that are way out of reach, is just so painful and torturous. Telling myself that Andy will be in a special school, and let's see how much he can learn, seems to work the best. Giving up the hope that he is going to sit up or crawl, and just putting him through the motions of these activities, and hoping that maybe he will just pick up a tiny fraction of what his brain needs to do these things is what I am focusing on. Not the big picture. It's too self defeating.

Some hours of the day, accepting, some hours or minutes of sadness. It's okay.

Too much

The great feeling I had from the mom  support group has faded, although I am thankful for Andrew's current abilities. The fact that Andy couldn't walk or crawl was muffled out by the other mom's whose children couldn't swallow food, or maintain a sitting position. It actually made me feel proud of him for what he can do. I think that is what made me feel the most peaceful. And hearing about the other mom's similar struggles.

Today, I am going to bed early and hoping for a better day tomorrow. There is simply too much laundry, too much yard work, too much housework, my kids need too much attention, my poor husband has to work way too much, and I am coming down with a sore throat and fever. My 4 year-old daughter, formerly my sweet angel, now a little devil is driving me crazy. Way too sassy, too much attitude, too picky, too impatient, oh God help me. She is way worse than Andy at this point, in terms of stressing me out.

Time for bed, time for bed.

At peace

I went to a moms support group tonight at my sons physiatrists office. It was my first time going. After having gone, I am feeling very at peace now. Just talking with the other women in person that understand how exhausting it is felt very freeing. I came home feeling like I fully accept whatever may lie ahead, and am happy with the way my family is. We all love each other so much, and are grateful to have each other.

How old is he?

This question stinks, as all strangers like to ask it. Now that he is two, the looks are getting even stranger. Or their mouth hangs open, or they just say "uhh ok" and turn and walk away. It's just something people like to ask, and it sucks. Yes, he's two. A non-walking, not yet talking two. Sigh

Although, I am very excited that Andy is using the word "up" pretty regularly now. When this word first surfaced a few months ago, it only hung around for about two weeks, then vanished. Now that it is back, I'm hoping it is here to stay. I love how he can verbally communicate SOMETHING to me finally! He looks at me, then says "up", and I pick him up and praise him for telling me "up". I tell him, "you told mama up, so I will pick you up". But while at the store today, when he was in the basket, I said "oh, you want to get up, but mama will pick you up when we are all done at the store".

So thank God for giving us something we so desperately needed to see. It confuses me though, because the gross motor is still so bad, but speech is emerging. I know there are a lot of mobile, but non-verbal kids out there, I guess I just thought he would become mobile first. It makes me scared that he will not be walking for a long time. I have already accepted this, and expect to be ordering a wheelchair for him for preschool. It's hard to be optimistic anymore, I feel like I'm just kidding myself.

New outlook

I wonder what Andy would think if he read this blog 10 years from now. Especially, if everything is "okay" with him. He would probably wonder why I worried so much, and why was I so sad for him all the time? When I look at him, he is happy. He doesn't know what he is missing out on. When I am sad, I am usually thinking too far into the future. Dreaming up sad scenarios that haven't even occurred yet. Or, I am constantly thinking of what he should be doing right now, and it hits me hard.

So, I have to reframe my thinking. Andy's physiatrist enforced this when we saw her yesterday. She told us we have to stop looking at the target, and celebrate his current accomplishments. I agree completely. There are things he can do now, that a year ago seemed never possible. He just turned two, and that was hard to swallow, but it is fading now.

He is a happy boy, so I should be happy for him. He has so much fun playing in his outdoor car toys, and electronic toys. He loves interacting with his sister, and music. Music makes him so happy, and is calming for him. He likes Lady Gaga and Black Eyed Peas! He finds happiness, even without movement. So, I will too.