I think I belong here now...

Junebug060609 · June 2013

Hi Everyone,

My DS diagnosed with a speech delay at his 18m appt. The pedi suspected some global delays and we (finally, a day shy of 21 months) got in for his developmental assessment. He was delayed in all areas except gross motor skills, expressive speech most severely (~6 month level). She also was moderately to severely concerned about autism. Basically said he's so young she doesn't want to diagnose after one meeting, but that there were a bunch of red flags.

I'm so incredibly overwhelmed right now. I knew he had delays, but never dreamed they'd be this bad or that autism would be mentioned.

So, hello, hope you'll have me.

mommy0411 · June 2013

((Hugs)) and welcome. The entire evaluation and diagnosis process is completely overwhelming. My son sounds similar to your DS. He is also delayed in everything but gross moter, has major sensory issues and is on the spectrum. We got his diagnosis at 21 months as well. It hard but it does get better. Feel free to ask any question. There are a lot of very knowledgable parents here!

kcisthebombdotcom · June 2013

Welcome!

i would not be too concerned with autism yet. It is common for kids who are significantly delayed to have some autistic traits. Both of my kids did at that age and neither are autistic. My son caught up completely with his peers a year after his initial Eval even though he had receptive/expressive language skills nearly a year behind at 20 months. I was fully, 100% convinced my daughter was autistic. I watched the videos on the autism site and they all resonated with me as things she did. Her social skills didn't take off until after her second birthday. She was recently retested and her social skills are in the average range for her age and her functional and pretend play skills are ahead of the curve. She is still delayed but is making gains.

thehoneybadger · June 2013

Sounds similar to my son. When he was evaluated at 24 months he was significantly delayed in all areas except gross motor. He made some progress with EI but the bulk of progress was made when he aged out of EI and went into the school districts special needs class. He made so much progress in just 6 months time. We suspect autism but don't have an official diagnosis. We have a provisional diagnosis of PDD-NOS, which doesn't exist in the new DSM. My son went from no words to saying small 2 word sentences.

lite-bright · June 2013

Hi and welcome.

My DD1 has autism, dx'd at age three. She is five now, has made great progress, and will attend a mainstream preschool class this fall after two years of preschool.

A lot of us have been where you are, and know how hard it is. We're here if you have questions or just need a place to vent!

Junebug060609 · June 2013

Thank you all for your welcome. I'm so overwhelmed, my head is just spinning. A little confused bc the doctor didn't formally diagnose DS (I think because of his age), but I was told to call xyz and they are for people who are diagnosed with autism. I'm alternately worried sick about autism and global delays and thankful. I've been struggling with him some lately and hearing there might be a reason

KC_13:
Welcome!
i would not be too concerned with autism yet. It is common for kids who are significantly delayed to have some autistic traits. Both of my kids did at that age and neither are autistic. My son caught up completely with his peers a year after his initial Eval even though he had receptive/expressive language skills nearly a year behind at 20 months. I was fully, 100% convinced my daughter was autistic. I watched the videos on the autism site and they all resonated with me as things she did. Her social skills didn't take off until after her second birthday. She was recently retested and her social skills are in the average range for her age and her functional and pretend play skills are ahead of the curve. She is still delayed but is making gains.

Thank you so much for this. He has significant speech delays (~6m level at 21m). I think his receptive language was around a 12m level. The videos on autism speaks...the second one where the boy pushes the container back, no eye contact...that could be my son.

I think that's one of the hard things right now. Not knowing what's going on is so hard.

Junebug060609 · June 2013

Brandi Bee:
So sorry you're going through this, I've been there. My daughter was not evaluated until she was two, even though I pushed for it at 18 mos. When they evaluated her, she was only saying one word and we still weren't sure if it was being used in context. They told me she was operating at the level of a 9 mo old! I had known something was different for about a year but it really hurts when someone else says it to you. I don't know why.
She's had a year of therapy in the home and then this past February she started preschool and started getting therapy 2x a week there. Next week she starts summer camp that is specifically going to help her with language and social skills. She's made a lot of progress. Doing well with PTing, using sentences, using words to get her needs met. Before when she wanted something, she would just cry and until we figured out what she needed it would just continue to escalate. It was hard but now that is something that happens less and less even. We still don't have a diagnosis and I'm hoping to hear from this new place that is evaluating her within a couple of weeks.
Point is, you're doing the right thing by getting your LO some intervention. Early intervention plays a huge part with autism. I still feel sad thinking about her delays sometimes, but most of the time I don't even care if she gets labeled autistic. It's just the language she speaks, it won't define her and I'm sure it won't define your LO either.

Thank you. My head is still reeling from the appt yesterday. I knew he had delays. I was expecting the speech one...but at a 6 month level???

Do you mind if I ask you (a global you) a question? The doctor noted some behaviors that were concerning...things like shoving a container in my hand when he wanted more food while looking at the container and not making eye contact, for example. He does do that, I observed it several times today...but then there are moments where he'll make eye contact with me long enough for me to recite a favorite book, while smiling and the whole nine. I feel like I'm getting some signals for autism and some that it might not be...and they flip flop on a dime.

monica93555 · June 2013

I'm right there with you. My son's assessment is in a week and a half. His preschool teachers have mentioned autism and we're trying to process it. I'm so sorry you are going through this

Junebug060609 · June 2013

Frig. I was hoping for it to be autism it had to be always.

I was just looking back at the monthly journal I kept for him and at 14m he had a handful of words. 15m, less but still some new ones. 16m is when I first mentioned my concern of the wordloss to my pedi. He was always fine at check ups until that point. Online I see onset is often 15 to 30 months. Great. I'm sure you guys understand the myriad of emotions. Everything from this can't be real life, there must be another explanation to praying it doesnt get worse [does it? He's 21m] to being a little relieved it isn't just me and that it's probably normal to be overwhelmed and frustrated with this as a parent...especially before he was diagnosed...which I don't know if he officially has yet.

Junebug060609 · June 2013

BeaF12:
DS1 was also 21mos when he was diagnosed w/ severe speech delay and developmental delays. After a year and a half of EI, he now only qualifies for a mild functional delay and severe expressive speech delay, apraxia. He also had some red flags for autism, he didn't point to anything, little eye contact. I cried when they went over the results. Now his therapists do not see autistic tendencies. His SLP said kids w/ apraxia don't learn how to communicate the same way typical kids do and it's difficult for them to form sounds, so this contributes to the lack of eye contact. It is very overwhelming, does your EI program have a parents support group? Ours does and it is nice to talk to other parents IRL who face challenges that parents of typical kids do not face.

That's really encouraging.

I am so back and forth on what to think about the autism suggestion. I can see what she mentioned with the lack of pointing and lack of eye contact when he's asking for something...but then there are days like yesterday where I push myself (I've been battling depression and I worry that has impacted him, I'm facing it and asking for help tomorrow when the docs office opens) to interact with him more (I'm a SAHM) and he's a totally normal kid. Stomping in the puddles with me from the sprinkler and looking in my eye for approval, doing silly things to get his daddy's attention and smiling when we give it to him, looking where I point rather than at the hand, making babbling noises unprompted, taking less than five minutes to try play feeding a stuffed animal after I showed him how to do it (something from the test I realized I hadn't done was stuff like that)....and more.

I don't know what our EI has. I made the call to them, but haven't heard back. He hasn't had a speech or hearing eval even though I asked for it, the pedi wanted this developmental one first *sigh*.

I think I belong here now...

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