Sunday, May 29, 2011

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.

Friday, May 27, 2011

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.

Wednesday, May 25, 2011

Sad day/ End of Year evaluations

I am so, so sad today. It all hit me after my son's IEP was done at our house, and I read over his goals. Finger feeding, getting into/out of positions, crawling, standing and maybe cruising. I am so overwhelmed with sadness and I feel so helpless and lost again!!! I thought I had it together, but as I have seen from posts of other special needs moms, there are many ups and downs. Perhaps more downs than ups. You feel good for a while, then something triggers sadness. I know this will pass. I just have to continue on my quest to have a great summer, regardless of disabilities.

Saturday, May 21, 2011

Swim class and family birthday party

I bravely have Andy enrolled in a 18 month to 3 year old swim class, when I really should have him in the 6-18 month class. He is two years old now, but still at a 12 month old level, and non-mobile. However, I was brave, and put him in a class with his "peers". I was reading that it is important for Andy to do activities with normal children, but maybe they should be normal 12 month olds. Who knows. It is hard when the instructor says, "okay, now let your kids run around and explore in the shallow water", and there is Andy, just sitting there. Or someone will say to me, "wow, he is so calm, and not running away from you". Lately, I just don't want to explain anything, so I don't. I almost feel like I am going to make them feel bad for saying what they said. But they aren't thinking when they say things to me, so why should I be so protective of their feelings? It is so confusing lately, on how much to say to someone, or just let it all slide.

The family birthday party went well, in the way of good weather, and good behavior from the kids. Andy has had a bad week, so it was nice to see him enjoying himself. I had a few comments from family members like, "Andy is doing so well", and "he's fine, don't worry", but easier said than done. I don't know why they say it. Maybe they feel I need reassurance. I'm sure they can see my anxiety over it. I just don't say anything back to them either, because I just don't know what to say or think anymore.

Wednesday, May 18, 2011

Headed for derailment

We celebrated Andy's second birthday today, but he was in a "it's my party, I can cry if I want to" kind of a mood. ALL day. It's to be expected after yesterday's ER visit for a fever of almost 107. Another terribly bad day, yet again. I was hoping his birthday would go okay, but Andy isn't paying attention to the calendar. Oh, how I need a long break, not just two hours, how about two days??? 

So, I thought I was doing well as a parent. I've been getting Andy to all his therapy visits, to school, and to extracurricular activities. I've been on autopilot. I was feeling proud of myself for getting everything accomplished and treading water with house work. However, when Andy's pediatrician saw me a few days ago, she said I wasn't looking well. She asked if I had lost weight, and mentioned that I need to take better care of myself. She suggested that I can't take good care of the kids, if I couldn't take care of myself. I didn't get too shaken up by the comments, because I feel she may be somewhat right. 

So maybe she's onto something, I have been lightheaded and overtired. Before this train jumps the track, I have to take a better look at how I'm treating myself. Just because I'm keeping all of our appointments, doesn't mean I am taking good care of myself. It doesn't reflect that at all. My appearance and mental state, is what reflects that. I've been emotional, not happy, not cheery, and everything else that comes with caring for a special needs child. It's draining me, I know that. 

So, I am looking forward to slowing down for the summer. School will be done, no more home visits, and will probably slow down on the private visits. The kids recreational classes will be over in mid june, and we will just go do things as we feel we can. I am not going to over schedule myself, I need to take it easy for the summer, to get myself "back on track".

Tuesday, May 17, 2011

My broken spirit

I just spent my wedding anniversary in the ER with my son and husband. He woke up with a fever of 106.7. Seems to be an upper respiratory infection. To top it off, I went to a toy store to get a few more gifts for Andy's second birthday, and was handed some thoughtless comments by the cashier. She asked how old the kid was that I was buying for, I said "two". She said, "oh, this stuff looks like what you'd get for a real little kid, like a baby". I didn't feel the need to explain my sons 9-12 month status, and just said "oh, okay" paid and left. If I wanted to be a b!tch, I could have made her feel bad, but I didn't have the energy. I just don't care right now. People say crazy stuff all the time, it is just par for this course. A course which I'd like to run her over with a golf cart on.

Lately, when I look at myself, I feel my spirit is broken. Even around the other preschool moms, they are all so cheery, and I am dreary. I feel I would be a totally different person if andy was running around playing just like all the other kids siblings do. Then I could stand around and happily chatter with everyone, and not worry about racing off to the next therapy appointment right after. I love Andy so much, it has really changed me. I just don't fit in right now, with normal parents. It's hard to relate to my sisters or anyone without special needs kids. It is just a completely different world. Priorities are way different, everything is different.

Monday, May 16, 2011

Motivation down again

It has been a hard week with Andy having a cold since Mother's day. I went a few days without eye patching or putting on his AFOs (ankle foot orthotics), because he was so miserable. Now getting back to it is hard, especially when I know he is so far from walking. My guess is that he won't be walking for another year, or year and a half. He will be two in a couple of days. It is really hard, knowing that he is two, and still non-mobile and non-verbal. I'm just very sad about it, but I know it will pass soon after his birthday. I hope I won't be too emotional in front of everyone.

It also sucks seeing all these newer babies at the swimming pool, and at his school that can already do so much more than him. At 6 months old and 9 months old, doing all the right things, it makes me so sad. It's really painful. It's hard to go through the motions, but I push myself to do it for him. Because we believe in him, and we would do anything for him.

Friday, May 13, 2011

Best use of Andy's nap time

I used to allow myself to rest and take a nap if I wanted during Andy's nap time. A recent comment made me start using his nap to clean more. It was hurtful to hear about my messy house from someone else. I have to say, it sucks not getting that time to relax. The house looks nice, but I am wiped out. So, I will probably just return to taking better care of myself during Andy's naps. I just don't think it's worth it, to not be refreshed for my kids and husband. I will probably just tackle something small, and then rest/relax until Andy wakes up.

Wednesday, May 11, 2011

Had to cancel therapy/Thank God for naps

I thought I was on top of everything this morning. I had taken my shower and dried my hair before Andy was awake. I even had my four year old Gabrielle's waffles almost ready for her when Andy woke up. I got his oatmeal ready, and he ate well, and so did Gabby. The screaming started when Andy saw the tooth brush coming at his mouth.

He screamed and screamed and was inconsolable. I put him down in his crib, so I could brush Gabby's hair, which she hates. Her hair is long and curly, and she always has a meltdown. So, of course, huge meltdown, while Andy is screaming. Then I am screaming at her, and I try to go and console Andy, and it can't be done. I put him on the floor with some toys, and think "should we still try to go to therapy today"? It is a 25 minute car ride, then he has 45 minutes of PT followed by 45 minutes of OT.

I look at the huge pile of dishes in the sink, and the big mess in the family room, and I am so stressed out. I try to proceed with getting them ready, but Gabby is screaming and crying in her room, and so is Andy. I decide it's best to cancel, and try to calm everyone down. I've tried to push through before, and I just end up regretting it when I get to the office.

I cancelled, then went in and talked with Gabby to get her to settle down and stop screaming.  Then Andy started calming down. He played quietly with toys, while I cleaned up all the dishes. I got them done, and got the family room cleaned up, which would be used in the afternoon when Andy's teacher comes to visit.

It was so nice to take the time and get the house cleaned up, instead of having to rush out the door for therapy appointments. Lately, the house has been let go, because of Andy needing constant attention, and his appointment schedule. We all ate lunch, and Andy easily went down for a nap. While he slept, I got both bathrooms cleaned. Thank God for nap time!!! I'd never make it, if it weren't for Andy's nap time.

Monday, May 9, 2011

What's all the fuss?

Had to leave the house in the middle of doing laundry, due to Andys constant screaming. He was fine in the car and took his nap in the stroller at the mall. I'd prefer him to nap at home so I can get stuff done around the house, but it's what we had to do today to keep him happy. He has been having a runny nose, not sure if due to teething or a cold. Got a little shopping done, so I made it worth our while.

Friday, May 6, 2011

Bedtime trouble

We have a bedtime routine we have been using forever, and nothing has changed. Lately, Andy screams for an hour or two when it is time for bed. It has been tough on everyone. He is so angry it is hard to calm him down. I finally got him to go down tonight with a really calm voice telling him it's okay, but it only works after he's been crying for a while. He will be two in a month. Why does this have to be so hard?

Tuesday, May 3, 2011

AFOs are building confidence

Well, it seems the AFOs (ankle foot orthotics) are building Andy's confidence in standing and playing with toys. Andy is 23 months old, and still not standing independently or walking. I am finding it hard to find the hour a day to sit down and put the AFOs on. I thought that when I got them, I'd want to put them on all the time and be more motivated, but I'm not. However, I think in the few days he's been wearing them, he is becoming more tolerant of them.

We are currently patching Andy's right eye for two hours a day, so I can't help but feel badly when I have to put the AFOs on as well. I don't want to completely irritate him, and when he is sick or touchy it is hard to do either to him. So, I'll have to pray for extra motivation tonight.