Today was an assault on our senses, our emotions, and our self-confidence. The boys were in rare form today and could not be in the same room together without fighting and crying and hitting and throwing. They could not be in different rooms without screaming because they wanted what the other one had.
Bill had the day off of work for the holiday and did his best to give me some down time, but it was just that kind of crazy day.
I was about ready to have a meltdown from all the noise and misbehavior when I looked at the clock and realized that I was late for Brendan’s school meeting. I raced over there but was so mentally unprepared to deal with it all.
We always try to treat Brendan like the loveable boy that he is. We don’t see trachs and tubes and problems, we just see an amazing little guy. To do their job, the school does detailed evaluations and they quantify, qualify, label, and score all of Brendan’s deficiencies. He qualifies as between mild and moderate developmental delays in most areas like gross motor skills, social skills, and cognitive development. Obviously he has a severe delay in speech.
Even though he qualifies to attend their program, we have decided that it is too dangerous for him to start at school right as we enter the winter with cold/flu season.
He will be getting 1hr a week with a preschool teacher in home instead of 7hrs a week in the classroom, but we can continue to have OT/PT/Speech and feeding therapy services as well in home.
Come Spring, he can be re-evaluated and maybe have some classroom time.
I was just so depressed leaving the meeting, filling out a million forms, dealing with so many specialists. All of the scoring and tests and expectations we were going over and where he falls short just rubs a raw spot in my confidence. Trevor isn’t meeting many of the things they were talking about either. His refusing to potty train is frustrating too!
Pile on a heaping helping of wound up craziness. Here’s a free sample. Watch out for your volume.
Oh my, Tiffanie, where do I begin? Brendan is indeed a loveable and amazing little boy! Everything he is and is able to do is because of you and Bill, and your love, devotion, and hard work and sacrifices. I know you have moments filled with doubts and concerns, and it makes you question yourself, and your confidence. But what the rest of us see is a strong woman who had so much love to give, who tried so hard for such a long time to bring these two amazing, adorable and precious little boys into the world. You have nurtured them and taught them, entertained them, made them laugh, and shared their every day, with all of the ups and downs, with so many people who have also grown to know them and love them.
Neither of these beautiful boys can be expected to be at the level of many other 3 year olds. They were preemies, Brendan has fought his way through more than most people experience in a lifetime, and they have had to share you and your time and energy. There is no way to factor those things into tests, and qualifications, and comparisons.
I say, forget about the numbers and the scores, and believe that there are a lot of “normal” 3 year olds that aren’t as smart or advanced or clever or loveable as Brendan and Trevor. They will both catch up to wherever they are “supposed to be”. Many kids their age are not potty-trained! So what? They’ll get there.
I’m proud to be their Gramma! I’m proud to be your Mom! I love you all so very very much. Please please don’t ever doubt that you have done your very best, and that’s all anyone can do.
Sleep well, my beautiful daughter. If I could possibly tell you how much joy you bring me with these blogs, and allowing me to know those amazing boys, you could be confident in how wonderful you are!
All the love and hugs I can send,
Mom xxxxxxxxx
The people at the school, have, obviously, never seen the daily videos in this Blog.
They obviously have no knowledge or experience with the “problems / causes”, that Brendan has endured, and still become the fantastic boy that he is.
I do completely agree that the boys should have “in-home” schooling, at least until Brendan is totally free of all tubes / wires, and can chew and swallow without the restrictions he has now. Neither of the boys need Flu, or any of the other “medical problems”, easily picked up from other kids, at school.
Gramma said it all perfectly. There are a greater percentage of new parents who couldn’t begin to cope with what you, Tiffanie, have handled, maybe not with ease, but definitely, with professionalism, tolerance, and unbounded love.
I doubt, that any of those who doubt you, would continue to, after seeing the last almost 1100 days that you have handled, and survived.
Those who know you, Tiffanie, Bill, Brendan, and Trevor, know that you have not failed in any way, in spite of the odds you have faced.
You are loved.
Those evaluations are so tough, because they are designed to find the areas to target for services. They are inherently focused on weaknesses, not strengths. They serve their purpose, but are not easy for you as parents to endure. Every child would have some areas that are not met. With kids, they keep testing until they “fail”, to see where they are. Development is so variable though. And after the age of 2, assessments are very language-based, which puts B at a distinct disadvantage. His physical delays are understandable, and his language delays are expressive, not receptive (more a motor issue than a cognitive one). He will catch up. And cognitively, he is great – take it from someone who knows these things and knows him! It sucks to hold our kids up to a nebulous standard, to see them be judged. Just remember it is just to identify services, not a judgement of B or of you.
I’m right there with everyone else! The hardest thing to do is have people focus solely on the areas that cause your children to struggle. It is almost impossible to not take it as a personal critique or failing in what we do as parents. The boys will both catch up without a doubt. Neither of my girls was potty trained at age 3. They were not fully trained until almost 4! And then it happened quick. Kids decide when they feel like making major jumps in development, and we all just keep plugging along until they do. You guys are doing your best, and it is what your boys need right now.