I Need a Hug (long)

[Crimson Wife]

I was going through our files looking for DS' baptismal certificate to sign him up for CCD through our parish. I came across the file with his speech therapy reports from when he was 2 1/2 and 3 1/4. I looked them over and in the "behavioral observation" section, I found this:

 

"___ demonstrated infrequent eye contact when spoken to, and initially ignored requests and commands from the clinician. About 30 minutes into the evaluation, ____ began to follow some simple commands and engaged in joint attention activities with the clinician. _____ was particularly drawn to cars, puzzles, and stacking cups."

 

and this:

 

"_____ frequently presents with difficulty transitioning and with reduced compliance for following instructions, turn taking, making appropriate eye contact, and participating in structured activities. If his request for toy/game/object is not addressed immediately, he tends to keep repeating the name of the object without listening to the communicative partner."

 

Under the "expressive language" section, I found this:

 

"____ will only speak upon will and not in response to request or command."

 

Under the "receptive language" section, I found this:

 

"____ follows 2 step directions with cues and rewards. He does not participate in activity unless given a highly desirable incentive as a reward. He needs frequent redirection and mod-max cueing to comply and participate."

 

Ever since youngest DD's autism diagnosis, I've been picking up on more subtle signs in DS. The fact that he sometimes needs to be reminded to keep eye contact. The fact that when he gets excited about something, he talks at people rather than with them. The spinning, which prior to DD's diagnosis I had thought was possibly an indication of ADHD.

 

I hadn't pursued an evaluation for him because I wasn't sure that at this stage, it was enough to qualify him for a formal diagnosis of ASD rather than just what one of the books I read called the "broad autistic phenotype". Without a formal diagnosis, he wouldn't qualify for any services through our health insurance, the Regional Center, or the charter school.

 

Now looking at these speech reports, I can see that the symptoms did manifest prior to age 3. I just didn't pick up on them and he never was evaluated by a developmental pediatrician or other clinician with expertise in diagnosing ASD. :crying:

 

I left a message with the pediatric neurology clinic and am waiting for them to get back to me to schedule an evaluation for DS.

[Harriet Vane]

:grouphug:

[FairProspects]

:grouphug: I wouldn't freak out just yet though. My ds displays some of those characteristics too, and at various times I was convinced he was ASD, but after multiple evaluations he is SPD with some difficulty picking up on social cues. You just don't know until the evaluations come in, but I do understand how difficult it can be to do the process all over again.

[freeindeed]

:grouphug:

[wapiti]

:grouphug: I wouldn't freak out just yet though. My ds displays some of those characteristics too, and at various times I was convinced he was ASD, but after multiple evaluations he is SPD with some difficulty picking up on social cues. You just don't know until the evaluations come in, but I do understand how difficult it can be to do the process all over again.

 

This. FWIW, viewing these report observations through a different lens, instead of symptoms, I might see a slow-to-warm/introverted/shy kiddo who is also strong-willed.

 

:grouphug::grouphug:

[fiddle]

:grouphug:

 

A friend of mine told me this pearl of wisdom that I keep with me often: "You made the best decision at the time with the information that you had."

 

It's often easy for us to beat ourselves up and second guess how we handled things, but it's how we move *forward* that really makes a difference.

 

Hugs.

Paula

[melmichigan]

A friend of mine told me this pearl of wisdom that I keep with me often: "You made the best decision at the time with the information that you had."

 

It's often easy for us to beat ourselves up and second guess how we handled things, but it's how we move *forward* that really makes a difference.

 

This is so true. :grouphug:

[justamouse]

:grouphug::grouphug::grouphug:

 

Big, huge, hugs.

[houseofkids&pets]

:iagree:

 

:grouphug::grouphug: I understand your fears and I think that it is a good idea to follow up with an eval for ds if you feel that you are still seeing red flags.

[Dandelion]

:grouphug:

 

I completely understand how you feel. DS is 8.5 and wasn't diagnosed with Asperger's until age 7 - but the signs were there much earlier. He was our first, and I just chalked his idiosyncrasies and difficulties up to being a strong-willed, very unique child.

 

Hindsight is always 20-20. Be gentle with yourself. :grouphug:

[merry gardens]

:grouphug:

[jenbrdsly]

:grouphug:

 

Try to think positive, and remember how great it is that you have written records. Lots of parents have to fight legal battles with older, talking children, and no documentation to prove that that when their child was two, he/she had symptoms A, B, and C.

[Guest]

:grouphug: You will be in my prayers. What you are reading in the reports is what I have been seeing in both my boys :(. I thought my oldest to be quirky when he was little. Knowing what I know now, I am pretty sure there's more. The time has come for me to push to have something done too.

[AmyinMD]

Try not to be too hard on yourself. I know in hindsight I should have started the process with ds about a year before I actually did. I kept telling myself he was a late talker like his brother.

 

I wouldn't necessarily assume you need a diagnosis at least for school services. My son gets the exact same services through our school district as he did without an ASD diagnosis. All services are based on current testing (anything over 2 years isn't generally looked at) and demonstrated need.

[TryingHardMom]

:grouphug:

[Tiramisu]

I wish I could give you more that this: :grouphug:, and instead sit and have a cup of tea and just listen.

 

As wapiti said, there can be other explanations, but just the idea of having to start this process with another child when your still in the middle of it with your youngest is overwhelming, isn't it? I know I sometimes feel like I'm taking turns going from one dc's problem to the next's. At least, that's better than dealing with all of them at once. It certainly isn't easy.

 

I re-read your initial post after reading wapiti's. The descriptions really fit my second to a T when she was younger. She's 11 and they would still fit but only in certain situations, like when she's in a doctor's office (a specialist, not the pediatrician that she knows well) or in an evaluation. She doesn't line up little people anymore, but she still doesn't make eye contact or speak with strangers that she feels are showing her too much attention or sizing her up. Otherwise, she's very well-adjusted socially. And your little guy was so young. The behaviors are certainly explainable in shy child.

 

Make the appointments and do what you have to do, but in the meanwhile, try to take one day at a time.

 

Let us know how it goes. :grouphug:

 

One more thing: I think autism is so much on everyone's radar these days that they make note of every little thing that could be a sign of ASD, when it might not be.

[chiguirre]

I'm sure you've heard this before, but he's still the same kid whether or not he qualifies for an ASD diagnosis. Since you didn't feel the need to have him evaluated for EI when he was younger (and nobody, including the SLP told you to have him evaluated for autism either) he's probably not that severely affected. It'll be okay, you haven't messed up his life because you waited a couple of extra years to have him evaluated. If he needs help, he'll get it now and you'll both move forward from here. Geezle's social skills group won't even take kids until they're 7 or 8, so you're not too late by any means.

[QuirkyKapers]

:grouphug:

[Zoo Keeper]

:grouphug: I'm in the process of putting the pieces together for two of my boys too. :grouphug:

 

Praying for you.

 

And you, too, Marie. :grouphug:

[Guest]

:grouphug: I'm in the process of putting the pieces together for two of my boys too. :grouphug:

 

Praying for you.

 

And you, too, Marie. :grouphug:

 

Thank you, I appreciate it. My thoughts and prayers will be with you and your family also :grouphug:.

[Caroline]

:grouphug: A positive thought... You have worked hard to change your family's diet to help your youngest child. He has been getting the benefit of that, too.

[sbgrace]

:grouphug: Be gentle with yourself. :grouphug:

[Crimson Wife]

So I talked to my mom today. She claims that she told me her suspicions about DS having Asperger's when he was a preschooler, but that I blew her off saying that the school district IEP assessment had ruled out ASD (which they did, but obviously their financial incentive is to avoid diagnosing as many kids as possible). I don't recall my mom mentioning Asperger's at all, but youngest DD was a newborn at the time so who knows.

 

The neurologist wants a referral from our primary care pediatrician and that's a conversation I was hoping to avoid. I love our pediatrician because she's very "crunchy" and accepting of alternative lifestyle choices like homeschooling, vegetarianism, complementary therapies, etc. but the flip side of that is that she's a bit skeptical of LD's and thinks they are overdiagnosed. She questioned youngest DD's autism diagnosis initially, and DD's symptoms are much more clearcut.

 

Ugh.

[QuirkyKapers]

Aww- Mom's sometimes have a way of being sympathetic in a very unsympathetic way. :grouphug: What do you think the would help convince the doc to make the referral?

[CarolineN]

Aww- Mom's sometimes have a way of being sympathetic in a very unsympathetic way. :grouphug:

 

So true! I have one of those. She means well.

 

Do you have to actually talk to the pediatrician? I've called our ped and requested referrals over the phone. The receptionist takes the message and it's taken care of. Sometimes the nurse will call me back, but very rarely the doctor.

 

My oldest son was diagnosed at age 7 with pdd-nos, 1 year after his brother had been diagnosed with autism (age 3). I was really kicking myself at the time, but looking back I really did the best I could. The important thing is that we did get his diagnosis and now, a year later, things are going very, very well for him.

 

Try not to fret, things will be okay. Hugs to you!

Edited June 9, 2012 by CarolineN
Posted before finishing

[Guest]

The neurologist wants a referral from our primary care pediatrician and that's a conversation I was hoping to avoid. I love our pediatrician because she's very "crunchy" and accepting of alternative lifestyle choices like homeschooling, vegetarianism, complementary therapies, etc. but the flip side of that is that she's a bit skeptical of LD's and thinks they are overdiagnosed. She questioned youngest DD's autism diagnosis initially, and DD's symptoms are much more clearcut.

 

Ugh.

 

I hear ya! I hope it does not work out that way though and that you get the referral you need.

[jenbrdsly]

:grouphug: A positive thought... You have worked hard to change your family's diet to help your youngest child. He has been getting the benefit of that, too.

 

 

That's a really good point!

[UmMusa]

You're a good mom, and you'll be ready to do what you need to do.