So, the big news of the day is that my mom's ultrasound of her thyroid came back clear. Still waiting on confirmation from the radiologist, but her internist thinks it looks good, so... whew. We've done the whole cancer thing once already, and soooo do not want to go down that road again. So, now the question is- what IS going on in there? Whatever it is, it's not a malignancy, so I'll take it.
The other thing is this: It's looking pretty likely that baby J is autistic. Both his pediatrician and his speech therapist are strongly suspicious, and I myself have been worried for a while. He's 2 and not talking much (though making great progress in speech therapy). He makes eye contact, but not as well as the girls. He likes to spin toys (or used to, anyway- he sort of dropped that), fixates on toys, plays by himself. Anyway- lots of little things. He's such a smiley, cuddly baby, and so connected to me, and that's the thing that's keeping me up at night. Am I going to wake up one day, and the little boy that I know will just be gone? No connection, no light in his eyes? Will he come home from kindergarten crying that he can't learn something, or can't make friends like the other kids? I don't know what to expect. The spectrum is huge. I'm constantly choking back tears, trying to keep it together. I mean, it's not leukemia, right? I can do special needs, no problem. I'm just terrified that he's going to disappear right in front of me. Or grow up terribly sad and isolated. Oh God, I'm afraid of everything. I'm so afraid and sad, I can barely breathe.
So. Next step is the appointment with the neuropsychologist. I'm hoping she'll toss us out of her office and scold us for wasting her time, but I doubt it. I think it will be better to know, one way or the other.
LAST DAY OF KINDERGARTEN :(
14 years ago
I'm sending you an email. I'm going to SF tomorrow for work but will try to call you IF you are up to talking. Your fears are making me so sad for you, for all of you right now.
ReplyDeleteKeep breathing...sometimes it's all we can do.
Hey I am coming over from last chance IVF. I have no idea how to show you support during this time as I have not experienced this! I cannot even imajine the thoughts going through your mind and the stress you feel! I will say a prayer for you and your family tonight.
ReplyDeleteThinking of you..
I have been praying and thinking about you all non-stop. I think I have been anxious for you as I have eaten almost an entire bag of M&Ms.
ReplyDeleteTruthfully, I kinda had wished it was the other way around as the treatment for thyroid cancer is surgery followed by radiation, whereas autism is lifelong. (Yes, I have been pouring through all my books, medscape articles, etc.) Even then, your mom deserves a break too after all that she's had to go through too. Sheesh! Hopefully that all gets straightened out and she's a-ok.
With baby J, I can see where the concerns are BUT (here come my list of buts)....BUT he is loving, connected, has interpersonal relationships, he gets it, is imaginative, and is pretty smart. So I am still hoping for just a speech delay/deficit and that you get booted out of the neuropsychologist's office too! There is such a huge spectrum and such controversy over the diagnosis and the overload of treatment therapies- it is all so, so scary and intimidating and overwhelming.
Just know he's not going to disappear. It broke my heart to read that! It's not degenerative. Just like how he has improved with speech, he will only get better with therapy. Easier said than done, right? When it's your baby...you just want the best for them and to protect them and not even have this on the horizon.
Hoping for only the absolute best. When you're ready to talk, I'm here. I have a whole other bag of M&Ms to eat too.
I'm so sorry for all of these goings-on. Life can't ever just give us a break, huh?
ReplyDeleteim here from last chance ivf, and i wanted to wish you good luck with baby J...i taught preschool for five years and i can tell you that early intervention is key and the fact that you are catching it on the extremely early side is going to make all the difference in the world.
ReplyDeletei come from a family full of people on the autism spectrum and ill tell you that it's not always an easy thing but so rewarding.
my sister in law has a 17 year old son who is non-verbal. she and my brother also have a 4 month old. she took the baby to the older boy's speech therapy appt tonight (because we are out visiting and my brother took me and my sis out to dinner) and instead of running in to the office as soon as she parked the car, he went and stood by the back of the car, waiting for her to get the stroller and put his brother in. at the end of the meeting he kept pointing at the baby, reminding his mother not to forget him!
small victories but oh so sweet for them.
i also have a close friend who didn't have ANY intervention until her son was 5. he has been in his new classroom for a year and is already socializing and having much more fun than he used to.
it's not all bad, different, but not bad. you and baby J (big J, adult J...) will always have the bond that you share now. i hope you can find some peace...looking forward to how the doctors appt turns out.
lis
xoxo
Hi, I am coming over from last chance ivf. I just want you to know I'm praying for you & your family.
ReplyDeleteI have a family friend who's son was diagnosed very early with autism & they worked with him constantly. He's improved so much that they've reversed the diagnosis.
Also here from lastchance. I am so sorry you are going through this. Please allow yourself to take one small step at a time. It is all we can do sometimes when the big picture is so overwhelming. My nephew is autistic and started therapy at a young age and has come so far in the last 7 years. It really is amazing the things they do these days with intensive therapy. Hold on to that if you can.
ReplyDeleteTake care. I'll keep you and your family in my thoughts.
I'm here from lastchance also. I have a 19 year old son with Asperger Syndrome who was diagnosed at age 5. He is graduating from high school this spring with a 3.8 gpa and will be attending our local community college next year. He has a girlfriend and is very happy. It hasn't always been easy, but it sure is rewarding. I don't know where you live, but if your son is diagnosed, I would encourage you to find a program like the ABC Center in Winston-Salem, NC (http://abcofnc.moonfruit.com/). Early intervention is indeed what's needed to bring out all the best in your son.
ReplyDeleteHere from last chance - I will keep you and your family in my thoughts.
ReplyDeleteOh I'm so sorry your family is going through this. I'll be thinking about you guys and I really hope all is well. xoxo
ReplyDeleteI'm so sorry about your mom - I hope they figure out what's going on (or not) soon.
ReplyDeleteAs an SLP, I'm so happy to hear that you are getting your son speech therapy - early intervention is so critical. It sounds like he has SO many strengths and a very on-top-of-it mom who will figure out how best to help him. Best of luck.
Also here from lastchance - and just wishing I could say anything useful. Still, I hope that more good wishes are always encouraging.
ReplyDeleteBack in the early 80s my BIL was told that his son would never learn to talk or interact with people and that he should be sent to an institution. But his parents refused to believe that it was so dire, and did everything they could to help their son. He graduated from UC Santa Barbara with honors a few years ago and now works in finance. I think dating was hard for him when he was younger, but as an adult he seems to have found a good match. And he never lost a close connection with his parents - he is still very much a part of their lives.
Almost 30 years ago they had so few resources and almost no outside help - I am hoping you find a lot of support and reassurance as you negotiate what must seem to be incredibly daunting at this point. Lots of good wishes to you and your son.
I'm here from lastchance. I know there is nothing I can say or do to ease your fears so I will keep your family in my thoughts and prayers as you figure things out. Many hugs.
ReplyDeleteI'm here from LC as well. I'm sorry things are so difficult right now. I have no advice, but wanted to let you know you are in my thoughts and prayers.
ReplyDeletehugs.
I'm here by way of lastchanceivf blog. Just wanted to let you know that I'm thinking of you and sending prayers your way.
ReplyDelete((HUGS)) I'm sorry things are so difficult for you right now.
ReplyDeleteLike lots of the others, I am here from Last Chance. I teach early years here in the UK and have taught quite a few kids on the Autistic Spectrum. Like you say, the spectrum IS huge, and while there are some people on the AS who are non-social and non-verbal, there are many who most folk would never know were on the spectrum. Three of us from our school went ona course about ASD and all three of us decided our husbands had elements of the criteria for diagnosis - and all of them are married, have college degrees and are successful in their jobs.
ReplyDeleteAnother thing - he IS still your little boy and always will be, Autism or not. Among the AS children I have taught, they have all shown attachment to and affection for their parents. They have also all been fascinating and rewarding children to teach.
Take deep breaths and one step at a time.
Oh, I'm so sorry. Mrs. LC sent me over. Hang in there. My thoughts are with you. -Stacey
ReplyDelete