Dan has it in his head that there is nothing wrong with Ryan. Or at the very worst, Ryan is slightly autistic. Barely. Very, very mildly autistic. Borderline autistic. However you want to put it. His reasoning? Ryan is progressing. Because, you know, in order to be autistic you have to be one step above being in a vegetative state.
Yes, Ryan is progressing. With the help of two therapists who come out to the house each week, and my own reading and research, we’ve reduced Ryan’s daily rocking and headbanging from 3-4 hours to less than an hour. With the use of weighted vests, form hugging suits (see photo), a purse full of toys (including toothbrushes and my wallet), pacifiers, sippy cups, constant supervision and near constant movement, Ryan tolerates being out in public, in crowds and in large, open spaces. But only if he is in a good mood. And if we breathe just right. Otherwise? Forget it. Meltdowns ahoy.
He still doesn’t talk.
The eye contact is there, but not like it should be.
He doesn’t interact very well with the three of us, and doesn’t even acknowledge anyone he doesn’t know.
He roams and wanders aimlessly.
He has a lot of repetitive behaviors: opening and shutting drawers, pushing buttons, spinning toys, etc.
He doesn’t always respond when you’re talking to him.
He often isolates himself from us. He is with us, but not with us.
He needs constant movement, constant motion. Around the house, in shopping carts and his stroller, and in the car.
He craves a lot of deep pressure — rough housing, being tossed around, massaged very firmly, etc.
He can’t handle a lot of people, or open areas.
I know Dan is going to read this and yet another argument will start, but too bad. My feelings, my blog. We disagree on Ryan being autistic, and I’m venting about it. Dan told me last week that he wants a second opinion on Ryan’s diagnosis. Because a diagnosis by a professional and well qualified center, and the agreeing opinions of therapists who are professionals in the field of autistic toddlers and children, as well as the agency that initially evaluated him aren’t enough. But hey, I’m open to a second opinion. Except that I have enough on my plate with handling Ryan’s day to day needs, Alyssa, my own things and my own work and responsibilities. If Dan wants a second opinion, he can get it. He can look up the center, make the phone calls, arrange the appointment, fill out the paperwork. I’ve had enough phone calls and appointments and paperwork to last a lifetime, and they keep on coming. And that’s why I bolded last week: we discussed this last week, yet nothing has been done. *shrug*
Dan not wanting something to be true isn’t going to make it go away. And Ryan not being nearly comatose doesn’t make him not autistic. Contrary to popular opinion (or in this case, Dan’s), you can be high functioning, can progress and ultimately be more than a warm, breathing paperweight and still be autistic.
Whew. And with that, I’ll step off my soapbox.
Yesterday I took Alyssa to the pool again. She loved it. I think she really had a good time today, because I gave her a swim sweater to use. She was all over that pool. Shallow end, average area (4ft – 5ft), deep end, even hopping in the 12ft. section. At one point she swore up and down she wanted to jump off the diving board, since a few other little kids were. I told her she could, and went into the water beneath the board, so I’d be right there when she jumped. She got on the board, made it to the very end, and made the mistake of looking down. Heh. With a squeaky, “I’m scared. I can’t!” she was off that board and back onto the ground in a flash.
We’re gearing up for Ryan’s birthday party this Saturday. Danielle and Matt are coming down on Friday evening, and everyone has called or emailed to confirm that they’ll be here for the party on Saturday. Ryan’s birthday party supplies arrived yesterday, and I’m going to get to the bakery by tomorrow afternoon to place the order for the birthday cake. Then it’s just figuring out last minute food arrangements, buy presents, and we’re good to go. I can’t believe my baby is going to be TWO!
Some pictures from yesterday:
New makeup. So spiffy!
Oh, and for those who have asked: My camera is a Nikon D40x. I use 18-55mm and 55mm-200mm lenses with UV filters, and I save photos in RAW format and adjust colors, saturation and lighting in Adobe Photoshop. 
Ryan looks like he is so grown up!! Hehe can’t wait to see you guys!!
I see understand both sides. You’ve had this experience before, Jenn – meanwhile, this is all new to Dan. It doesn’t seem to me that Dan is ignoring the situation, I think he’s just trying to make sure that all options have been explored and that no leaf is being left unturned. Be fortunate to have a husband that is concerned about the situation and wants to make sure that his son is getting the absolute best that he can be.
Even if the second opinion is the exact same, there is no harm in having that second opinion done. Perhaps the second place can recommend a different type of treatment – interacting with other children, a certain diet, etc.
Errr.. I’ll learn to edit one of these days!
That’s supposed to be:
I can understand both sides.
LOL
I’d love to make it up for one of the kids Birthdays, sometime! Would love to meet you guys + Danielle and Matt too.
Looks like Alyssa had a blast in the pool. Remember how we had to use the swimmies and tubes? It’s amazing to see what they’re coming up with these days to give the kids more independence while swimming, and of course, safe!
And, I’m completely envious of the new eye shadow palette you have. Just about every shade of color under the rainbow. May I ask where you purchased it, and for how much? Hah, not like I really need it, because I’ve already got a bag full of assorted ones. Could I really spare the room? I think not.
I know what you’re going through right now and I hope things get better. Ethan is not autistic, but he is epileptic. My husband refuses to see what is wrong, although we have EEG’s & MRI’s showing seizure activity. Dan will come around when he is ready, but until then I wish you the best of luck!
I love the pictures of Ryan and Alyssa… I cannot believe Ryan will be 2 already! It seems like yesterday when you were pregnant with him.
I’m not going to agree/disagree with either one of you. I’m not a doctor and I’m obviously not his parent and don’t know the situation intimately.
But from what you’ve said… my brother used to exhibit the same behaviours as Ryan almost exactly, and was diagnosed as having sensory disorders and being ‘special needs’ in general (they hesitated to give an autism or Asperger’s diagnosis, but both came up several times). My mother got him into a ton of therapy sessions and he worked with several teachers every week during early childhood. He has speech pathologists, physical therapists, and even does some horse therapy.
He’s three now and still a bit behind, but in the past year he’s made SO much progress it’s unreal. The same doctors who deemed him as having disorders and special needs a year ago probably wouldn’t say the same about him today.
My suggestions, if you haven’t tried them:
- contact your local school district and see if they have PAT (parents as teachers) or some equivalent. They come out once a week for my brother with individualized lessons and also usually have a plethora of resources you can consult. And it’s a good way to get your foot in the door for special-ed pre-k programs which might have a waiting list. You can easily get to know the special ed teachers/therapists in your area.
- PLAYGROUPS. Socialization at an early age is vital. He might struggle and resist at first, but my brother *loved* his music/dance group so much before he learned to talk — it was a way he could express himself. He also goes to a story group and a few other groups where he can learn to interact with kids his own age. The library, the YMCA, etc. are good places to look for inexpensive or free groups.
- Baby sign language is AMAZING. My brother is talking how, but until he was 30mos or so, his primary communication was all signing. He could easily form a ‘sentence’ with gestures long before he started saying any words. Sometimes if one mode of communication doesn’t work, you have to try another. See if there are any classes around you or check out a book.
(this comment was probably wayyy too lengthy and maybe you’ve heard it all before ;p)
I like you color pallette mind if I ask where you got it from ? I think Dan is in a little bit of Denial but he will come around it is just hard for him as I am sure it is hard for you too. Both of you need to be strong for each other and for Ryan. I wish I lived close by I would have loved to meet you guys and be there for Ryan’s birthday.
You have such an adorable little boy!! I love those pictures. Especially the one in the pool.
I’ve never had to deal much with autism, but I had a neighbour we use to visit all the time after school who had an autistic boy. He was always off in his own little world, usually repeating commercials or tv shows. I haven’t seen much of them since I was little, but I hear that he’s doing perfectly well now. I don’t think that the word ‘autism’ should be as scary as some people seem to think it is, but that’s been my only experience. In the end no matter what it is you’ll work through it and you’ll love your boy and that will be the important thing. I hope the birthday party goes well and everyone has a great time!!
I can’t imagine what yourself and Dan might be dealing with having a child with autism. I think Dan may just be holding on to a shred of hope that maybe Ryan is just going through a phase, that maybe he was misdiagnosed. Just give Dan some time. It may take him longer to come to terms with the situation.
Continue doing what you are doing with the therapy and the research. Jenn, you are a very strong woman. I don’t know where you stand religiously, but something my dad used to tell me is that God wont put more on your plate than when you can handle.
Ryan looks so cute! Men never like to face these things, My oldest daughter has a learning disability and ADHD and for the longest time he did not want to accept that she has problems with learning among other things. We had to get her placed on medications and he was dead set against it. That’s just how some men are. Hopefully he’ll begin to accept it, i’ll keep you and your family in my prayers.
-hugs-
I’m sure you’ve probably heard of this website, but autismspeaks.org has some excellent information on autism. Reading what you wrote about your husband not understanding about being high-functioning AND autistic prompted me to reply. My cousin has Aspergers Syndrome, which is a high functioning autism. She is VERY intelligent, but she lacks certain social skills that generally develop. The following things that you listed are things that my cousin exhibits:
The eye contact is there, but not like it should be.
He doesn’t interact very well with the three of us, and doesn’t even acknowledge anyone he doesn’t know.
He roams and wanders aimlessly.
He has a lot of repetitive behaviors: opening and shutting drawers, pushing buttons, spinning toys, etc.
He doesn’t always respond when you’re talking to him.
He often isolates himself from us. He is with us, but not with us.
He can’t handle a lot of people, or open areas.
Heather has a hard time looking at people.. it takes a LOT of self restraint for her to do it. She doesn’t like meeting new people, which is partly because of experiences she’s had now that she’s older. She’s almost 10, and kids think she’s “weird” because of her lack of eye contact and her poor communication skills. She has a lot of repetitive behaviors, mainly regarding her schedules. She has a certain TV schedule, and if she misses a show or something, she freaks. She’s highly addicted to Meercat Manor and some other cartoon show. We went on vacation, and she borrowed one of my movies: The Swan Princess. She watched it that night as she went to sleep, then she made me start it over when she finished it. When I woke up, she was watching it again. Over the next few days, she watched it at least 10 times, and I am not exaggerating in the slightest. She likes familiarity. To get her to respond, we usually have to touch her shoulder or be right beside her. And we used to say that she was in “Heather land” — the light was on, but nobody was home. She scared my best friend because she would just sit with this blank stare on her face, and then she would have this smile creep across her face.. and it scared my friend. But she would rather play by herself and live in her own little world than socialize with anyone, even her sister. And she doesn’t like meeting a lot of new people. Big areas don’t bother her so much, but lots of people does.
I just wanted to encourage you and your husband.. Aspergers may or may not be what Ryan has, but it sounds like it. And it is a highly treatable condition. My cousin is on medication [Vyvanse] and she sees a therapist a few times a month to work on social skills and such. She even has a social skills class at school, which has helped out SO much. She has been on the all-A honor roll for three semesters in a row now that she is being treated. And her social skills with others are getting so much better. She still prefers to be by herself, but she will play with me if I ask her to. Feel free to email me if you need any more information about it. My aunt would probably be more than happy to talk with you as well. My uncle was very much like your husband at first.. he didn’t think that Heather was autistic. He thought she was just a normal child who was a little more rambunctious than most. But flying off the handle because your socks aren’t the right ones or because someone turned on the hair dryer or the vacuum or the doorbell… that’s not “normal” and he finally saw that.
Sorry this is so long.. I just felt really convicted to tell you our experiences and hopefully encourage you. Please contact me if you have any questions or want to know more! And definitely check out the Autism Speaks website if you haven’t before.. it’s pretty great.
As someone else mentioned, your brother had some of the same symptoms and is autistic and he is functioning better now isn’t he? He may have behavior problems, but he is communicating, etc? Did your mother have all of this available to her back when he was a child? It seems like the outlook is better for Ryan. There are advances being made every day and Autism is a hot topic so people are paying attention to it.
I’ve told you, a good friend of mine has a brother who is autistic and a genius. I believe he has a masters degree. It takes a lot of determination on the parents part, and if Dan needs that second opinion by all means he should seek it out. He should not blame you in the future if it’s not obtained.
I would lean toward some socialization as well like a playgroup, but only after discussed with the therapists that come into the house. I’d say it would need to be a very, very small group as well. And maybe there is even something by other moms of autistic children going on. Support for you and for Ryan. That would be awesome!
I don’t know what you are going through…but I can understand. Dan probably just wants a normal little boy that he can do things with like other dads with their sons. I hope he can learn to be ok with the son he has though.
It will take time though.
I love the pictures. I looked at all the pictures that showed up on the main page… I love the close up of your daughter in the previous post. Very cute.
I hope yall have a great time with Ryan’s birthday. :D
That makeup is rainbow sexy-ness! I want! Where did you get that at?! (Never mind, found out on your Flickr page where you got it.)
I’m glad to hear Ryan is progressing. (I don’t think I have commented here in forever and a day.) I was supposed to have an autistic child in my classroom this upcoming school year. He will be going to another school now though. He was an extremely bright, intelligent child. His downfall was his behavior which sometimes was very much less than acceptable. Children with autism seem to have a variety of characteristics and not all children have all of those characteristics. I’m not a professional of course, but being in education I have a little experience with autistic children. Getting a second can’t hurt anything if that’s what your husband wants, but I think the most important thing is just getting Ryan the help he needs regardless of a formal diagnosis. Obviously, something is going on with the little guy!
Like you said, children with autism can most definitely be high functioning. The child I was supposed to have in my class, like I said, was extremely intelligent, could answer anything I asked him, but just had issues socializing with others and exhibited some behaviors that got him into some trouble. I hope Ryan makes more progress!!
Wow. I can’t really sympathize but I can understand what Dan must be going through. He wants a normal boy to play around with and take to sports games and someday play catch with. My husband is the same way. I tease him, “What if our son was gay, or wants to be a dancer???” I myself would want a normal child too but I will love and support whatever he may want and or become. Neil however would die. He’s a jock and a start basketball player so for him to have a son that didn’t want to play basketball or even a sport, that would kill him. Men…