What am I missing?
I’m sitting outside of the preschool watching the playground. It’s the second day of “Circle Time Camp”, the camp for all the kids attending preschool for the first time in the fall. I’m watching Lewis. He’s running around the yard, going up the ladder and down the slide, reaching his hands up high to hang from the monkey bars. When camp is over, he follows the other kids to the bench and waits for his name to be called to go home. He sits with his hands in his lap, nicely waiting his turn.
What can’t I see?
On Monday, I’ll be taking him for his developmental evaluation at a hospital in Boston. It’s the appointment that I canceled back in March, when my gut was telling me that there was nothing wrong. It’s the appointment that I rescheduled after his early intervention speech pathologist suggested that he needed to be evaluated. He’ll be seen by a developmental pediatrician and a speech/language specialist. I’ve filled out all the forms and arranged for child care for the other boys. We’re actually going this time.
But I don’t want to go. I don’t want to hear what they have to say. I don’t even know what to say to them.
I have watched him carefully since I made the appointment, looking for red flags or something that makes me feel like the appointment isn’t a waste of time. He has a speech delay. That I know. I’m watching his eye contact, his pretend play, his transitions. I asked those who know him to tell me honestly what they see.
They see my little guy. Nothing else.
When we did this with Howie, I knew there was something wrong. Something “off”. I expected a PDD-NOS diagnosis. This time…what is it?
This appointment is making me question everything I know as a parent. He was my surprise baby. I have watched him like a hawk since day one. Checking off the milestones on the list, including all the ones his brother missed. He’s my eater. My sleeper.
My buddy.
“Mom? How come all the other little kids at the family reunion could say their G sounds better than Lewis? Is it because Howie doesn’t use his right words and he’s copying him? Or is there something wrong with Lewis too?” My oldest’s words swirl around my head.
I’m not only challenged with figuring out if his behavior is that of a typical 2 1/2 year old or if there’s something developmental different about him. I’m also challenged with determining if it’s learned behavior from his big brother.
I’m the one who called Early Intervention three times to come out. I’m the one who knew that he wasn’t talking like he was “supposed to”. How could I be missing seeing something else? How many more labels will be added to the end of this child’s name?
I know the labels don’t change him. I have said it a million times to friends, family and other parents across the internet. The label does not make him anything else but who he is. All it does is get us the help he needs. That we need.
It’s easy to say. Not easy to remember.
It won’t matter what they tell me. I’m going in with an amazing, smart, funny little two year old and I’ll be coming home with the same kid.
It does matter. It matters a lot. I don’t want to do this again. I am not sure I can do this again.
I have to do it again. For him.
We have to know. And then, move on.
“If you put your trust in me I’ll make bright your day.
Look into these eyes now, tell me what you see.
Don’t you realise now, what you see is me.
Tell me what you see.
Listen to me one more time, how can I get through?
Can’t you try to see that I’m trying to get to you?
Open up your eyes now, tell me what you see.
It is no suprise now, what you see is me.
Tell me what you see.” – Tell Me What You See by The Beatles
July 29, 2011 at 3:06 pm
((hugs)). I’m still here, still wondering the same things about my youngest. Still confused as heck.
July 31, 2011 at 9:44 pm
I know. I’d be even more of a mess if I wasn’t going through this with you. I know that sounds wrong.
July 29, 2011 at 3:07 pm
I see a beautiful little boy with a strong mom, one who knows the path from past experience. One who knows what a long haul it is. Ignorance is bliss the first time around, huh? But at the end of the day, you’re right, the labels don’t matter. They help, yes, but do not define. Hang on to that beautiful little smile–you’ll be able to do anything for it. Hugs.
July 31, 2011 at 9:44 pm
Thank you
That means a lot.
July 29, 2011 at 3:12 pm
He is, and will always be, your perfect baby boy. You follow the path because it might lead to some tools to make his journey easier. Sum total.
But I know.
Hugs.
July 31, 2011 at 9:45 pm
You always have the perfect thing to say. Thank you.
July 29, 2011 at 3:26 pm
Oh, Alysia, as always you pretty much summed up my feelings and concerns! I wish you didn’t have to go through this. I felt this way when I took Charlotte in for her SPD diagnosis and I feel this even more now as I watch Tommy. As my mom questions his obsession with Thomas. As he screams bloody murder. I know I need to have him evaluated (even though I FEEL like he is fine) but I just can’t cope right now.
I wish I could offer some gem of wisdom. Hang in there.
July 31, 2011 at 9:45 pm
you hang in there too. I know we’ve been talking about this together for a long time. Someday we’ll figure it all out. Right? Thank you.
July 29, 2011 at 3:33 pm
You’re so right that the labels don’t define him, he’s the same great kid with or without them. As a mom that chose to wait…watch and see…I just want to say, I’m glad you are doing this now, even though it’s hard. My boys are 12, almost 10 (in a few days),almost 7 and 5 (two are on the spectrum, the other two have sensory issues/other stuff). We ignored the redflags we noticed, missed so many others and are just now this year trying to figure it all out. I wish I had taken them in years ago. For a long time Aaron’s only red flag to us was that he didn’t talk and had struggles when he did finally talk. I wish we had pushed when our ped at the time said “it’s just because he’s a boy and child number four, he’ll catch up”. I often wonder about “what if” we had pursued help earlier…All of that to say, I’m sorry, I know it’s hard. I know something as “simple” as this brings up so many emotions, thoughts and questions. I hope it brings answers, hope and tools to make the journey a little lighter.
July 31, 2011 at 9:47 pm
Thank you. that helps a lot. It’s good for me to hear that, since I’ve got one side saying “he’ll catch up” and another saying “there’s something there.” I’m glad you wrote here. Truly means a lot.
July 31, 2011 at 11:36 pm
This is completely irrelevant and insignificant to you, but I just realized that I typed my oldest two boys ages wrong…apparently, I’m not so great at multi-tasking. It should have said they are 12 in a few days, almost 11, almost 7 and 5. There all fixed, now I can sleep.
July 29, 2011 at 4:29 pm
I totally get this post…..my youngest is 4 and I have not made the appointment yet…….but I need to just do it. Is he copying his older brother – sometimes but I know in my gut it is more than that. Thanks for posting this I’m going to make that call.
July 31, 2011 at 9:47 pm
I cannot tell you how much your comment means. I’m glad you’re going to make the call. You just made this all meaningful. Please keep me posted on how it goes.
July 29, 2011 at 5:45 pm
I cant imagine it and yet I know if I had to I would. You’ll do what needs to be done and we are all here to support you, love you and let you let it out.
Love you,
Jersey
July 31, 2011 at 9:48 pm
Just like Jess, you always know exactly what to say and how to say it. Thank you. Knowing you are there means everything to me.
July 29, 2011 at 6:39 pm
I’m watching my youngest as well as I’ve shared. I have a running checklist in my head of the autism behaviors and what I’m seeing / not seeing. Not matter what, it’s all okay.
July 31, 2011 at 9:49 pm
I’ve read your posts and nodded my head along with you. I know we’re on this same confusing and maybe overthinking path. I don’t know. I’ll let you know what happens tomorrow.
July 29, 2011 at 8:05 pm
{BIG HUGS} I only have one child with autism. But this is my concern for a 2nd. Will I have the strength to do it? Again. And it makes me feel like a hypocrite. Because it matters as much as it doesn’t matter.
Whatever the outcome, you know what needs to be done. And you have lots of support.
July 31, 2011 at 9:50 pm
Thank you – I do have so much support, especially from my online world like you!! It means so much. You’re right. It matters and it doesn’t matter. But it is what it is, and us parents just deal with it like we need to for our kids. Thank you.
July 30, 2011 at 8:44 am
I really hope you get what you need to help Lewis. I wish I could say that’s all it boils down to, but as a mom who sits in nearly the same place (speech delayed child with SPD and quirks aplenty), I know that there is also so much more.
Like you, I’ve watched my little one like a hawk — trying to figure out what was clinical – what was life experience… what’s too much – what’s not enough. We’ve gotten an alphabet soup of diagnoses – none of which are enough to get Little Miss the help she needs.
It’s with the support of people like you that I’m able to take up the fight each day. I hope you know that. I hope you know what an inspiration you are. And I hope you know that there are a whole bunch of people here waiting to offer you the same support whenever you need it!
July 31, 2011 at 9:51 pm
Karla, as I said in my e-mail to you, your comment came at just the right time. Thank YOU for being there and helping me everyday.
July 31, 2011 at 1:41 pm
I know that this is hard, but getting an “official” answer will be helpful. My gut says it’s all speech delay and when that gets fixed he will be fine, but he may just have a somewhat shy personality on top of that which can look “off” to people concerned, knowing his brother’s history.
Also as long as you’re having the full eval – make sure they check for auditory processing issues which need specific and different interventions than garden variety “simple” speech delay. He may have processing issues around speech and language – that could be behind the extra quirk others see. There can be multiple issues without the social challenges that would put him on the spectrum.
And don’t worry, he will still be your same little guy no matter what they find and say.
July 31, 2011 at 9:52 pm
My “gut” says what your gut does, but it will be good to know. Because he’s under 3, he can go to the 0-3 clinic, and he’ll be seen by a whole team who will look for just what you’re saying (not just autism but everything under the sun…fun, eh?) I know you get it all, and I’m lucky to have you in my corner.
August 1, 2011 at 10:19 pm
Oh…I hope that the appointment went well. I remember watching Mae Mae like a hawk. I will wait for the post about the appointment. I am thinking of you. Your little guys are so lucky to have you as their mama.
August 2, 2011 at 8:48 pm
Wow. I have goosebumps. I watch my youngest (3 year old) like a hawk too. Especially because he had a pretty traumatic birth and now has a brain shunt. Good luck on Monday. Hugs and prayers your way!
August 5, 2011 at 2:56 am
I’ve enjoyed reading your blog…you have been such a joy and inspiration to follow. I felt compelled to leave my first response because this post brought me back to two years ago when my little girl was diagnosed just as she turned 3.
From the age of two we knew something wasn’t quite right, but she didn’t fit into any diagnosis easily. She would look and behave differently in different situations, with different evaluators, at different times. Some clinicians thought she was PDD-NOS, others said SPD, others said maybe ADD, others said speech delay, auditory processing…it seemed that each evaluator would look through their filter and see the diagnosis they specialized in.
At the end of all of the testing we felt more confused and alone than ever. One of my dearest friends, who had an older child with special needs, told me that the person best equipped to truly evaluate our child is myself/our family – we know our daughter the best. She assured me that over the time my fear and anxiety would lesson and I would be able to more objectively be able to see things as they truly are.
It’s taken two years, but I finally feel like we’ve become the experts. I know she has a language delay and SPD. Although she is still shy, her social interactions have blossomed as her language developed and so has her attentiveness. She has some quirky behaviors but there are mostly due to SPD.
I guess what I’m trying to convey in this long reply (so sorry) is that no matter what comes of the evaluation, please remember that as a Mom…you will know in your heart “what is it”. And it may or may not be what the experts think. When our children are so young, we really do know them best.
Thoughts and prayers are with you.
August 5, 2011 at 10:56 am
I am going through something similar with my son. I have been on guard since day one. Thankfully he spoke on time, but we still struggle a great deal with articulation. Then there is the sensory stuff that has always been there, but not big enough a deal to worry about…until recently when it’s gotten worse. I do think a lot of what my son does, behavior-wise, is learned from my daughter b/c he just does carbon copy things. I don’t see autism, I can say that for sure. But, is there a more serious sensory issue? ADHD? His 5yr appt is coming up, and I am going to see what the ped says. He does well in preschool, which makes me happy. My daughter never did! It’s hard when I don’t know what a typical kid looks like, but I also don’t want him labeled b/c I don’t know what a typical kid looks like, if that makes sense. At any rate, good luck!!!!