Saturday, July 23, 2011

The Ten Commandments for Parents of Kids with Special Needs

Sharing this, I read it on another blog.

1. Take one day at a time, and take that day positively. You don’t have control over the future, but you do have control over today.

2. Never underestimate your child’s potential. Allow him, encourage him, expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you’ll be able to answer to your child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can’t be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

8. Be kind to yourself. Don’t focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Friday, July 22, 2011

Update #2

Even though it was so long I still forgot some things to include in the update. Joshua is using a bigger boy sippy cup! For the longest time he was stuck on a semi-soft Tommee Tippee cup. I bought some other cups to try with him and he wasn't interested in any of them. He did like a cup that had a silicone spout but he bit a hole in it and then it leaked all over the place. A few weeks ago I tried a hard spout sippy cup that I had bought a few months ago again. It had Elmo on it and finally he decided it was ok! We have now switched him over exclusively to these cups! I am hoping eventually he'll take most types of hard spouts but for now I am thrilled he's happy with this cup. I have gotten rid of most of the others and am even going to be able to sell a brand new set that is still in it's packaging. He is also learning to take bites. Normally he would shove an entire whatever into his mouth but now if it's something too big he will take bites of it.

Update

It has been a long time so I thought it was time for an update. Joshua is doing so well! He is learning and growing and we are so proud of him! In March he took his first steps and now he is walking all the time! His gait has improved considerably and he is learning to climb steps and walk on uneven surfaces. He wants to run sometimes and will walk as fast as his legs will carry him, it is so cute!

He is learning one step commands, we have been focusing on give me by saying it and also holding our hands out to him and he is learning what it means. Sometimes he will give things we don't even ask for, just walk up to you and give you something. If it's a book it has to be read and he waits smiling eagerly for you to start reading. He mostly does this with me, with the same book, reading it over and over again until he's had his fill. He is interacting so much more.

He loves preschool. When we go in he will greet everyone by walking up to them. He plays with the other kids now and loves watching them and chasing them! He wants to do whatever it is they are doing. If they're playing with something he wants to play with it. He will take something if he wants it, even if someone else is already playing with it. He wants to be included especially with the bigger boys. He is sitting in a big boy chair at circle time now! Before he was in a Rifton chair with a seat belt. Now he sits in a cube chair. He is letting the teachers do more hand-over-hand motions with him as well.

He is sleeping in a big boy bed now too! We knew the time would be coming soon so I researched and researched which bed would be best for him. I had a few other special needs moms recommend one particular bed, a fire truck bed made by Step 2. Looking for it online I found it's no longer being made. Then I searched Craigslist and found someone selling one! What luck! It has high sides on it so he is less likely to fall out of it and it even has a step (not that he uses it right now, he scoots himself into it). Most toddler beds have a small area on either side of the headboard made to keep them from rolling and I was worried it wouldn't work. His crib was a convertible crib but it was too high off the ground and he couldn't climb into it plus it only had one small rail to keep him from rolling out. It has been 2 weeks now and he sleeps in it for naps and for bedtime. He is doing so well that we got rid of his crib! I will admit in the beginning it wasn't easy. I wanted to give up at one point but I am so proud of myself for not giving up because it was absolutely worth it. I have packed up all his nursery stuff and am trying to sell it. We are going to be getting some Sesame Street decorations for him, already got him a Sesame Street bed set. Right now though he isn't using a pillow and he's never really used blankets but it will be good later on. He fell asleep on the floor a few times but now he will play until he gets tired enough and then he'll crawl up into his bed and go to sleep! Have I mentioned how proud I am?

Sometimes I get down but I try to remember all that he has accomplished in the last few months, these have been huge steps for him and remembering that makes me feel good. This journey has not been easy but he's making progress all the time. Last weekend we went to an event with our local special needs group and it was at a splash park. We didn't think Joshua would like it but turned out he loved it! I LOVE seeing him happy! Isn't that all that moms want for their children? He had an absolute ball, I was only sorry I hadn't brought my swim suit because we had tried the sprinkler in the backyard and he wasn't interested so we were shocked how much he loved the splash park. We will be making a return trip. He is also learning to keep his head above water at the pool. We got him a floatation vest and are trying to teach him to kick and splash in the pool, he is getting better.

I am beginning to think he's going to eat us out of house and home! He is 30lbs and almost 36 inches tall. Everyone has commented since he started walking at how tall he looks but he is right at average for his age. I guess he just looks taller since he's standing up all the time now. He is eating and eating too! I don't know where he puts it! Used to be that he would be satisfied with 3 meals, now he wants snacks in between. If it's something he likes to eat he will eat a lot of it. He loves pizza and can eat 2 to 3 slices in one sitting! He also loves: grilled cheese, hot dogs, cheese crackers (he ate a 1lb box in less than 2 weeks!), yogurt snacks, yogurt, animal crackers, brother's fuji apple crisps (he won't eat any others) carrots and french fries. I know most kids his age aren't good eaters and he doesn't eat a lot of variety but the things he does eat he eats a lot of. I try to buy healthy snacks for him, like Earth's Best brand makes a lot of organic snacks. We also eat turkey hot dogs and I buy organic milk with DHA added.

Yes he is still taking 2 naps! Most people are astonished and I thought that moving him to a bed he might move to one nap which would mean we'd have to make some changes to his schedule but nope, by 10 or 10:30 he is ready for a nap and usually takes a short one. Then he naps from 2-4. We try our best to wear him out so he sleeps well. He's usually asleep by 8:30. Until the last few days he was sleeping until 6:30 or 7 but then he started waking at 5:30 so mornings are varied. Well it's time for my lunch and soon will be time for Joshua's and I think this is a long enough update.