There’s nothing worse than thinking something might be wrong with your child. Whether it’s physical or emotional or academic or social, it all sounds bad.
Our seven-year-old son, Rex, has been struggling in first grade. A big part of it comes from missing kindergarten and having a mother who would rather slit her throat than homeschool (tried that for 4 miserable months). It’s put him frighteningly behind where the standardized testing says he should be and as much as I hate what the testing says, I respect the school’s assessment.
In October we started the long and lengthy process called “How To Get Your Kid Help in the Public School System.” The step by painful step procedure is slow and meticulous but I think those are the very qualities which make it extremely thorough and, in the long run, successful. The days of throwing a kid into the resource dungeon are long gone. I’m amazed at how much thought and effort goes into one child and their individual needs.
In order for Rex to qualify for the type of extra help he needs we had to undergo a barrage of testing. My husband and I took tests, his teachers took tests, the clerk at the grocery store took tests, Santa took a test–basically anyone who has any contact with Rex on a regular basis put in their two cents worth. He was tested and evaluated by three separate specialists and the pediatric psychologist at the hospital did the final assessment.
Thanks to the combined obsessive efforts of so many professional parties, the elementary school now knows more about my kid than anyone (except You Know Who, I’m confident His file on Rex is the thickest).
We were scheduled to sit down with the pediatric psychologist and go over his results at the end of December. Unfortunately I found that I couldn’t get out of bed that morning.
Because no matter how emotionally prepared I think I am to handle results about my boy and his not normal test results, I’m really not.
We come across adults on a regular basis who think an afternoon of casual observation during a play date qualifies them to assess and diagnose Rex. They know someone who is autistic, or have a cousin with Asperger’s. I hate seeing judgement like that in people’s faces. They’re wrong and I know it; we’ve had him tested before. Quit judging my kid.
But on that morning I was gripped with panic and fear. What if all those people are right? What if I’ve been blind to Rex and only see what I want to see? What if he has a problem that is unsurmountable, something that will keep him from growing and progressing and living somewhere that isn’t our basement when he’s 40?
I called in sick that afternoon. Jason rescheduled for us.
I wish I could tell you that I experienced an epiphany during the three weeks between the two appointements, that I grew emotionally and stopped acting like a large whiny baby who needed to put on big girl undies and go listen to the doctor.
Unfortunately I’m not that good at growing up.
On the morning of our second appointment Jason tried to get me out of bed. “I’m sorry,” I finally said. “You have to do this for us. I just…can’t.”
The thing is, I knew that no matter what the test results said it wasn’t going to change how much I love my kid. He wouldn’t change just because someone gave him diagnostic title. He’d still be my happy, dreamy, helpful little buddy who likes to put things in the grocery cart for me and thinks cleaning the toilets is the best Saturday chore ever.
His results? They were exactly what we thought they would be and then some. In addition to his anxiety he has some learning hurdles to work around during these next couple of years but they are all workable. Next time I will be braver.
I really hope there’s not a next time.
Many times I read your posts and feel like we have so much in common. A couple weeks ago my youngest boy threw a fit at the military base where my husband is stationed. I’d just talked to the pediatrician on base about his behavior “issues” and whether or not they point to Autism or Asperger’s. I got a referral for a developmental specialist and began leaving when he threw a huge fit–a prime example of what I’d tried to explain to the pediatrician, only now there were civilians and military personnel to witness it. It went on for about 20 minutes before a woman came up to me and asked, “Is he Autistic?” I stood there and cried. We went to the specialist yesterday and while we have issues to work through and need to help him deal properly with frustration, the specialist confirmed that my boy doesn’t fall anywhere on the Autism spectrum.
I’m so glad your son’s specialists could give you a reason to be brave. Rex sounds like such a wonderful kid, all your kids do.
Hi Annie,
I am so happy to hear your results. I know what it is like to have to go through that feeling of why isn’t my kid acting like her siblings etc.and have other people judging. No matter what is different about our children we love them and care for them just the same. You were fortunate to receive some great news. He was blessed to be sent to you.
I’m so glad that this hurdle is behind you. It’s terrifying to face. When the home nurse told me my son needed special help because he didn’t move enough I sobbed & told them no (he was an infant). From there we developed into the exceptional family member program & progressed into an iep. Fast forward several years from the 2003 dropping of the iep because he’d met the requirements & we’re now faced w/ a kid who is a sophomore in hs, speaks beyond his age level, reads at a 7th grade level & comprehends written word at a 4th grade level. I feel like such a failure & haven’t decided how to get the school on board w/ this yet (we paid for the assessment due to the guidance counselor blowing me off repeatedly). We’re pretty sure that he learned to cope from his previous speech therapy iep. There’s obviously a lot I’m not saying but… Annie, it’s hard but it’s good to know & go from there.
My thoughts & prayers are w/ y’all that this will be but a stepping stone forward.
I need to be brave and start looking for help with my 5 year old’s anxiety issues. I am scared to even start down the path!
This is the second time in a month where I feel like I know exactly how you feel. My son has several very serious heart defects, nothing can be done surgically, and the doctors originally thought he wouldn’t live more than a couple days. He is now almost 12 and while he can’t run for long, and he is extremely small for his age, he is doing really well. He is a true miracle. There is still nothing they can do for his heart, but he still has to go to a cardiologist once a year, I think just so the doctors can look at him and go, “Huh, weird!” Most of the time we are able to go about our lives not worrying much or thinking about his heart, but these appointments always remind me of the uncertainty that surround his diagnosis. So as the appointment gets closer I get more and more anxious. I worry that they will find something new, or that his condition has deteriorated. I always know just by being around him that he is fine, but I get so worried. I know that isn’t good for him, so I have done like you, I make my husband take him to the appointments. And we are all the better off for it.
I hope this extra information is empowering for you–just like I’m sure diabetics are grateful to learn more about how their pancreas functions. And really, it’s not like “normal” is actually a real category. 🙂
I haven’t been blogging as much because of some of the things you described. This year has been the pits as far as peoples opinions about my children go. I’ve had people tell me I’m abusive for not medicating my child and I’m not doing my child any favors by denying he has ADHD. It’s an anxiety disorder I tell them and they say me and the therapist are clearly wrong. Clearly I am blind. Gar! The only thing we can do is prove them wrong.
On the other hand I have my daughter who is in Special Education and does seem to have a disorder. And I fully admit it. Because they approve of the help I give her and they see very obvious progress for her, they approve. They being those overly opinionated strangers. And I think, I DON’T CARE either way. I’m doing what I think is best for my child. In both cases. They are both wonderful.
I have spent many hours crying and being depressed and I can tell you one thing. It is going to be okay. It will be okay no matter what. As many people who are rude, there are more people who are willing to help and talk to you. Without judging. I don’t know what happened with Rex, but I understand the tests. I am doing it right now. Behavior tests, IQ tests, evaluations and everything. Only someone who has been through the system can understand. It is scary and sometimes I feel like staying in bed myself. I don’t want to face the Short bus in front of my house and the extra work I have to do. But it does get better. It is just harder. 🙂 I tell myself Heavenly Father loved you too much to let you have an easy experience with your children. And I can honestly say, he loves me more then most people. lol
I hope all is going well for you. And I hope my rambling makes sense. That is all I am capable of at the moment.
Dear Annie Valentine,
I have not abandon you. I wish I had great advice or a personal story that would help you to feel better. All I can offer this morning is a big virtual hug, and a sigh of relief for you.
ps- We are still fighting the swiss visa problem. House is rented, belongings are sold, we will be there soon.