thaoie Posts

Happy birthday to our little big guy!! What a huge year in progress. There’s so much to say so to make it easier, here’s a quick bullet point re-cap of his progress and current status.

• Began public special education pre-school
• Started sitting up, but in his own special way (what you would call a “w” position; still needs to be watched because he will fall back without realizing the danger)
• While lying down will kick his legs to rotate his body to be in a position of his liking
• Does not crawl, stand or walk
• Eye contact is more deliberate when he would previously just space out
• Better on bigger, more solid snacks but still mostly eating pureed foods
• Non-verbal
  • whines or cries for attention when in need or unhappy
  • laughs and smiles when happy
• Favorite things:
  • nursery rhymes either in just music format or accompanied by video
  • books–flipping thru them but especially to chew on
  • bubbles–watching them and reaching out to touch and pop them
  • people watching

Mentally we can see that he’s advanced greatly, but still at around a 9 month old child’s age. So don’t be offended if he doesn’t acknowledge you or say hello back if you greet him–his mental capacity is just not all there yet. We’re not even 100% sure if he deliberately responds to his own name.

Being non-verbal along with the advancement brings about more whining and temper tantrums. He can’t tell us what he wants or what is making him unhappy so he will whine until he gets what he wants and it will go into full blown temper tantrum if we don’t figure it out quickly enough. Keeping him on a set schedule helps us predict his needs and wants easier so that we can prevent the number of outbursts in a week. It’s not often, but they do happen and when they do we’re all just stressed to get the little guy back to status quo so that everyone’s happy again.

I admit that our lives are a lot more structured and decisions made around events to attend and travel are highly dependent on meeting Brandon’s needs. I don’t like to say that it holds us back, we just have to find other avenues to enjoy our time together. It’s definitely more stressful so most times we decide to just stay home to make it “easier” on everyone or split up. Tough for mommy and daddy time since its hard to trust anyone to properly care for Brandon. And many people are understandably scared to step in to watch over and care for a special needs child. No one knows him as intimately as we do so if we do go somewhere, its just for a couple hours when we know its the easiest hours to watch him.

Toughest thing for me is that he’s still growing–not up to par with an average 4 year old, but still growing nonetheless. He’s heavier to carry with his dead weight and whether its in/out of bed, wheelchair, highchair, car seat and baths; its just definitely getting harder with every passing year. We’re still in search of the best bath chair or mechanism for me to bathe him since it’s all on daddy now to do so.

Even with all the tough things we’ve had to do to adapt to Brandon’s needs, the very best thing about him is that he is true and genuine. If you ever get to experience his smile and especially his laugh in real life, it is the very best thing in the world. It is 1,000% genuine and will reverberate all the happy feels into your very soul.