Sunday, April 15, 2012

The springboard

I have no illusions. I know my children are behind in multiple areas for their age. I have many appointments and therapies that show me that (plus I have several very sweet same age companions down the road--well one, the other child is just a genius and can't be compared to ha,ha)

I'm pretty okay with my boys being behind. I've accepted that.
I mean if you look where they've started from:

They missed out on a full 12 weeks in the womb of quiet peaceful growing and developing and instead were prodded continuously with IV's, transfusions, xrays, breathing and feeding tubes and constant machine beeping (theirs and their neighbors).

In their first two years of life they've had to have nine surgeries to recover from, and countless infections and hospitalizations. Frankly their first year and a half of life with exception of constant doctor appointments and therapies, they were quite literally locked down at home. We were advised by the NICU doctors and nurses to try and avoid as much as possible any illness because initially their little bodies needed serious time to rest/grow. They were very high risk for RSV and the like. This momma bear took that to heart. It was definitely worth it health wise to try. Developmentally however, I think they missed out here.

It wasn't until they were around two years old that they started to finally see more of the "outside" world, go to library story times, interact with other kids, etc.

So I thought I knew what I was expecting when I sat down to read the evaluation results recently done on the boys. When any child receives therapies and services for early intervention as ours have and get close to their 3rd birthday they are re-assessed to determine if/what needs they will have after they "graduate" the program. Alex already receives weekly therapies in physical therapy, occupational therapy, and both boys receive twice weekly speech therapies. It may sound a little crazy to people who haven't had therapists come to their house for the bulk of their childrens whole lives but our therapists are honestly like family to us now.

They see and help your children grow week by week, seeing them more often than many family members do, they fall in love them and our children them. The boys look forward to their visits almost like it was their Nana or Mammie, racing to peer out the window when they know Mrs. Cathy, Mrs. Minnie, or Mrs. Tara are coming.

So even with all of that positive experience, its a little unsettling to have strangers come into your house, people who have never before met you or your children, don't know their stories, come in to assess how the boys are doing.

The team consisted of a school psychologist, physical therapist, occupational therapist and speech therapist. It took a little over two hours as they went back and forth between the boys. I tried not to intervene except when needed. I was watching the boys react to the questions, the puzzles, the "games". I could see the examiners writing down information, answers and following up by asking me or hubby questions about what the boys generally do when presented by x,y,z.

It almost makes you feel like you are also being graded as a parent in some ways. In many ways, I didn't feel like I was making the grade. Two weeks later we have the 32 PAGES of results for the boys. Much of what we already knew. The boys are developmentally behind for their age, they recommend continuing all therapies into pre-school. They even recommend adding special education for both boys to help them catch up.

They will be attending pre school in the fall five mornings a week. I know that in and of itself will really help them come along. My shy boys need to be able to separate from me, be exposed to more learning opportunities and engage with other children their age. This was already in our plan BEFORE the evaluations so it just reassures me that it is the right thing to do.

I'm kind of just babbling now, my thoughts and feelings a little all over the place. When you read about your children on paper, the way others who don't know them perceive them, compared with standardized measures, it feels so clinical. I know it needs to be objective. I get that. I also know its just the beginning of being compared, measured against standards that we all go through.

Its just they didn't get to see how far they've come, how far back they started, how much progress they've made and continue to make As a parent when you hear about all of the "deficits", you eagerly want to share the flip side, the whole child. Sorry, still babbling.....

All of the boys current therapists are really also their cheerleaders. Its written on their faces how they love them. They have all reminded me that this evaluation is just a snapshot right now in time, it in NO way suggests their potential. I do so believe that, even still it was desperately needed to hear by people who know and see my children often. People who have watched them with me week in and week out overcome so many obstacles in their very short almost three years time. There is soooo much ahead of them that I am confident they will continue to conquer!

All in all, I believe these early years both of my boys are just getting on the spring board, finding their footing and getting ready to soar.


MJ's Mommy said...

Well said a mom, a therapist, someone who has worked with and loves your boys & your family, and also has a child who receives heart feels each word you wrote and I've so much HOPE for greatness for Alex & Nicholas and in my 12 years of working as a therapist can I just honestly say you are one of MOST Incredible moms I have ever met and the
boys are blessed to have you xoxo. ~Julie

Holli said...

oh my gosh "Mrs. Julie" thank you for your comment!!! It means so much, especially coming from you. We miss you tons!!!

Ben, Jamie, Joshua and Caleb said...

I found myself nodding along in agreement while reading your post. I felt every one of those emotions when Josh went through his eval last year. You want to jump in and give those evaluators a glowing report on all the things that your child CAN do, and please don't judge him on what he can't do YET! And yet, with almost a year of preschool under my belt (and Josh's too of course!), I can tell you that the evaluation sounds awful and breaks your heart and makes you think that their teachers will use those 32 pages to judge your children...but it couldn't be farther from the truth. Josh's teachers and aides love him just as much as his therapists did. They praise him and hold him and hug him and love on him endlessly and Josh eats it up. And when reviews come up or P/T conferences, you'll hear the not so good again...but I'm convinced that they make our children sound worse than they actually are to get more for our kids. The boys are going to love their preschool...and you are going to love seeing them blossom. :)

Jen Butler said...

You and Mark and especially your babies are a light that is undeniable. I have two boys who have struggled academically and socially not because of anything serious but sometimes just because they're boys. BUT it has been said to me that the ones who don't measure up to man's rules and measures and expectations on paper are the ones who have already found ways to bring a smile to God's face just by being who they are, by pushing into the unknown without fear. I have seen and heard and read about) your boys and know that to them there are no limitations, there is no envelope to push because they don't even recognize the boundaries put on them by 'the experts'. I've seen your boy on his wheels and I'd challenge any grown man or woman to do what he does for an hour without complaining. Your double blessings are a blessing to many. I know the courage it takes to write these things while you're trying to not soak the keyboard from crying out of frustration over those who just don't know how far your boys have come. Just know that your written words are a blessing to someone else struggling with the same and KEEP GOING!

Holli said...

Feeling very touched by your comments. thank you guys!!!!!