Wednesday, February 17, 2010

Jack, part 3, and a blessed Ash Wednesday

Good morning! Thank you everyone for your kind and helpful comments and prayers, I do appreciate them all. I wish I could respond individually but it's been a busy few days and I've got tons to do to get out the door today for our little road trip. I did want to give one last post about Jack's history.

First, when I talk to people about Jack, I usually feel I'm getting one of two reactions. The first one is the "me too" reaction...especially about the speech issues and motor skill issues, from moms with boys, I would get the "my son did these things and he was fine" kind of thing. Which I'm sure is very true! We've seen it ourselves with extended family members. And even Maria had various sensory issues from the time she was a baby that led to weird little behaviors like refusing to be in the same room with a flushing toilet or vacuum cleaner until she was seven years old. hehe. Other than maybe the eye contact issue, I can't really point to one of the items I listed yesterday and say, "This means he has autism." We have a couple of friends with autistic kids, and I will find myself studying them and saying, "Oh, Jack does that. He must have it. But he doesn't do that, or that. Maybe he doesn't have it." The truth is that autism is a spectrum, and it affects different kids very two kids with it will look the same. And also, I'm not attached to having an autistic child. If they tell me tomorrow, "Hey, your son is fine, he just needs a little speech therapy and you'll be good to go," I will be doing the happy dance all the way home, believe me.

The other reaction I feel sometimes, and it's probably deserved, is at the other end..."what the heck is up with this? Why didn't you get him evaluated sooner?" Well, there's lots of reasons why we were able to poo poo this away for so long. For one thing, our pediatrician let us. Well-child visits are not what they ought to be, and screenings for autism are not what they ought to be. He's been to every well-child visit, and other than making sure he was making that eye contact as a baby, they were never concerned with anything but his speech, and that always progressed just enough to make everyone comfortable taking a "wait and see" approach to pursuing speech therapy. The possibility of autism was never, ever brought up by any doctor at his pediatric clinic. We were the ones that finally sought a referral. And Jack's symptoms were so subtle for so long and easy to explain away. These things became issues slowly over a period of five years,,,it wasn't quite as obvious a picture as I painted when I just made a list of all the problems he's ever had yesterday. Lots of kids are picky eaters. Lots of kids are slow to develop motor skills. Lots of kids are introverted. Lots of kids are slow to speak well. Lots of preschoolers have tantrums and trouble expressing themselves. Lots of preschoolers have weird little obsessions and routines. It wasn't until he was about 3 1/2 that I started to become concerned. But even then, we felt like maybe we were just comparing him to Maria, who was extraordinarily verbal and has always had amazing fine motor skills. It was only as he got older that I realized he was falling further behind, that his behaviors were becoming more and more pronounced. The hammer over the head was at VBS this past summer. Maria was a helper with the preschoolers, and she said, "Something is wrong with Jack. He doesn't act like the other kids." And I watched him, and she was right. Yes, there were kids, boys especially, that were distracted, that couldn't use scissors well, etc., but none really quite like Jack. I knew then, really knew. And I asked a friend of mine, a kindergarten teacher who knew Jack, and she said that yes, she did think there was something there. She was the first person to acknowledge this out loud, to not pat me on the hand and assure me that he was fine, and I cried over it, partly with grief but partly with relief of feeling like I was not crazy. And I talked to my husband, who insisted that Jack was fine, and I cried, and cried, and cried, and I researched and read, and I borrowed and bought books, and I talked to my husband again, who still insisted that Jack was fine, but I made an appointment with the pediatrician anyway and got the referral, and I cried some more and obsessed some more and dealt with this grief mostly alone because my husband still thought Jack was fine, and I filled out forms and got on a 5 month waiting list for this appointment, and I obsessed and read and mostly felt really alone on this journey, and I started to realize why so many moms with special needs kids are single mothers. Men, not all but most I think, are very, very good at denial, and very good at letting their wives deal with things like this alone. I saw it often as a pediatric nurse, most of the moms with kids with special needs, especially severe ones like Down's, CF, CP, etc, were single mothers. Some dads just flat walk out, but I think many times just the pain of both sides dealing with the problems so differently and not being able to reach each other tears them apart. I never thought my husband would be that guy, I never thought I'd be that needy, crying wife desperate for support, and it was a very difficult time for me. He did eventually come around and is trying hard to prop me up through this, which I appreciate, but he still has a very different way of dealing with this than I do, and that has been painful still. I'm very glad he is coming with us to the evaluation, because he needs to hear what they have to say, needs to have someone else talk to him about Jack besides me.

So, this post has gotten really long, and the main reason I wanted to write this is because I didn't want to leave this as I did yesterday, a long list of all the things that Jack can't do. Because that is only half the story. Part of the reason we were able to reason away Jack's problems for so long is because there are a lot of areas he is quite gifted in. We recognize now that his obsessive interest in these areas is probably another symptom, but still, he has quite an amazing brain, if a quirky one. Jack has always been obsessed with letters and numbers, and at age two he could not only count to 30 but could recognize written numbers up that high as well. He could also recognize all of the upper and lower case letters by age three and knew what sounds they made and what words started with those letters, and by his fourth birthday he had taught himself how to read. He has always, always been obsessed with vehicles of any kind, something I'm sure is common to many boys, but once he could read his obsession took off for real. He learned from library books the name of every darned construction vehicle and machine, farm vehicles and machines, different kinds of trains...some of his first words were "backhoe", "combine" and "excavator". He has also always loved music. At age two, his favorite song was Handel's Messiah. I know very little about music, but with a couple of favorite read alouds he soon learned the names of all the instruments in the orchestra and started begging for a tuba and a violin. Of course, he doesn't have the motor skills at this time to be one of those tiny people with a tiny violin, but we did get a piano last year, and he promptly sat down and taught himself to play "Ode to Joy" after hearing Maria play it a few times. Later, he developed an interest in outer space, and on his own he found a picture book about the solar system on our shelves and taught himself the names of all the planets. He can do extraordinary things, this boy, and whether this is just another symptom of his diagnosis or no, his extraordinary abilities will surely help him achieve many things. I know his delays are many, I know we have a long way to go, but I really at this point have high hopes that we can catch up his delays with lots of good therapy and really see him bloom. I know he will always be quirky, I know he will always be "different". That's ok. In our house, we don't consider that a bad thing. In fact, in our house, being "different" is practically normal. :) I hope that homeschooling will shelter him from the meaness "different" people encounter in this world until he learns well that he is wonderful and loved just exactly the way God made him. And with that, my friends, I need to go and get busy. Many small things to take care of before leaving my three other kids for two days. Tess is at my knee with a board book demanding some attention, so I'm going to give her some and then get ready to leave after noon mass today. It will be so hard to leave Tess overnight, but siblings aren't allowed at these appointments. And I have a feeling it will be very difficult, even for me, to hear what they have to say. Keep us in prayers this Lent if you would. I'm sure I'll be back soon to post all about our appointment.


Anonymous said...

HI Melanie

I am a long time lurker who found you through the (now very slow) Holy Family AP moms group. I want you to know that I will be thinking and praying for you and your family. We are in the "filling out the forms" process now for my 5 yo who has many of the same concerns. While he will still be the same little boy, getting an official dx is hard to hear.


Erin said...

Praying for you today!!

Charlotte said...

Husbands don't seem to want to "grieve" they want to "fix" the problem. My husband always has a date in his head that we will be "caught up." First it was kindergarten now it's third grade. We may or may not make it. But we have a goal and he helps with that goal. We've found that having things "Daddy" does is important. It's still very hard for my husband to be in public with our and see how other kids are. These are emotions he (and sometimes I) have to work through. I'm glad your husband is going with you guys. You are so right, he needs to hear what's wrong and what his job will be.

Lisa said...

Mel, I don't know if you have HBO, but there is a new movie called "Temple Grandin" that is incredible. It had me in tears. Temple always knew she was different. She didn't even speak until she was 4. Her mother never gave up. When children told Temple that she was different, her mother would tell her "different, maybe, but not less." That really resonated with me. This amazing woman embraced her autism and is now a professor at the University level. If you have HBO, I would strongly recommend you watching the film. It really touched me. God bless you and your wonderful family!

robbie said...

I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


Maureen said...

I mostly lurk, but I have been reading your blog for a while.

This post struck a chord. My second child, a boy, is a couple months younger than Tess. He has some mysterious set of issues. At 20 months old, he is only 18 lbs and 28", he does not walk, recently (as in the last 2 weeks) started taking steps, and had various other issues. Fine motor, socially, and emotionally he test at or above age level. Despite being to cardiologist, gastrointestinal doc, and neurologist, no answers. My husband is very much of the "there is nothing wrong" camp, but I just have a nagging feeling something is being missed. And his ped. that I love agrees. I love my quirky little boy, and wish I could do something. I'm praying for God to give you peace and fortitude for this journey you are going on with Jack.

Maureen (a different one than the pp)

mel said...

Thank you, everyone...
Lisa, I have heard of Temple Gradin. John, in fact, had gotten some book of hers from the library a while back and I read parts of it. We don't have HBO,,,I wonder if Netflix would have it...

Maureen, that's tiny! Wow! Of course, my children are just tall, chunky things, so it probably sounds even smaller to me than to most people. :) I had a friend with a child like this, and she ended up having celiac disease...but surely your son has already been tested for that by now.