Testing for DS1

[Thirteen]

DS1 is now four, and we've noticed that something is a little different. We are in the process of having him evaluated in many areas, although, he did test right on the cut off line on a behavioral intake eval for the school district.
He has trouble with transitions, some communication, and sensitivity to sound.
He met all his developmental milestones on time, and had no red flags, but some areas might need therapy.
He has: been evaluated for hearing (2 different tests already, last one next Tuesday), completed a dev eval with both myself & DH, and a SPL through the district, had a quick appt with his ped (and got referrals for dev ped & SPL), and here we are.

Just putting it all out there, as we don't have an official diagnosis, but it's hard.
Phrases like "ASD" and "processing disorder" have been used.
Parenting is not for the faint of heart, ya'll.


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[ladymoreta]

Hugs. I hope you get some answers soon. And early intervention is good.

[MrsK]

Deep breath momma. I've been through this with K1. He was ultimately diagnosed with a Sensory Processing Disorder. SPD is classified in the DSM -V as a subcategory of ASD (Autism Spectrum Disorder) which K1 may or may not have. He's been responsive to occupational therapy and doing well so we didn't pursue the ASD diagnosis. If he has ASD, then he'd probably be classified as what used to be called Aspergers but he's very high functioning, like in the top 1%. I know all that sounds terrifying but after a while, it's just a label and it's not that scary.

Baby's crying. I'll be back.

[MrsK]

Ok. I'm back.

For starters, I've met Bean. *If* there is anything, it's not going to be something major. While delays become more apparent as the kids get older, he's always struck me as being very similar to K2 who is just about the same age and is developmentally normal.

Last summer, I got K1 on waiting lists with various occupational therapists and developmental pediatricians. Then I called every Monday to ask whether there were any cancellations. I was the sweetest pest ever. When something opened up at the OT, I moved mountains to be there. K1 started OT last summer. While there have been ups and downs, his progress has been tremendous. I was also terrified of the IEP system in the public schools but I have found that to be the golden ticket. A lot of parents of SPD kids have difficulty getting IEPs because SPD is no longer a separately classification in the DSM. I got the IEP for K1 with "developmental delay not otherwise specified" to start with and once we had the IEP, the school can't take it away. This really helps out if K1 is behaving strangely at school.

Call me if you want to talk about it. I could go on forever and I don't know where to start. I don't want to overwhelm you with information, hijack, or lead you down the wrong path if it's not SPD/ASD.

[PrincessFiona]

Testing for DS1

I'm sorry you're going through this. It's scary and it can be frustrating. It sounds like you've heard a few different ideas about what might be going on with him.

I'd get in with a good pediatric neuropsych.

It sounds like there could be some ASD type stuff there. How does he do with play? Can he engage in imaginative play or does he do things like line up cars or toys in a special order? Any flapping or spinning? How is his eye contact?

Has he had multiple ear infections/PE tubes? Is there any sense that he has had some hearing loss (even if it was temporary) and might be experiencing receptive/expressive language problems?

((Hugs))

Kris


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[Thirteen]

No frequent infx, no flapping or twirling, no lining up toys.
He doesn't actively pretend to be anything that I know of, but he does enjoy climbing, chasing, etc. with friends (and actively approaches children to ask them if they want to play).
Eye contact is 50/50.

Hearing is just fine (I had hoped that was a primary factor).
Eyesight was checked out by optho as well.

Whatever it is, it flew under the radar until now because everything could be dismissed as new location/baby/moving/developmentally appropriate, etc.

Thanks for all the support -- I'll write more later on. DH and I keep going back and forth.


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[diggitydot]

Our little guy was about the same age when we got his initial dx. Hang in there. The time just prior to the dx is the toughest.

[peggyfromwastate]

Thinking of you!!! It's a tough thing to contemplate (all the what-ifs), so just try to take it one day at a time. Hugs!

[OrionGrad]

Thinking of you, too! ❤️

[admin]

Sending you good thoughts and prayers. Hopefully the fact that he engages socially and doesn't seem to engage in repetitive behaviors? plays out in your favor as far as ASD is concerned? Even if it is ASD I know you'll be on it as far as getting early intervention in place. You are most definitely on my mind. I have been where you are. It's so hard.

Hugs,

Kris


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[admin]

Omg. Why am I admin again?


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[MarissaNicole]

Just sending my hugs.

Wife of a PGY-5

[Thirteen]

Testing for DS1

Audiologist says all clear - next stop PT OT SPL and psych.

Not sure if DH and I are on the same page now: I am going to ask him to clarify a comment he made, but I suspect he believes I am on a disorder witch hunt. To be honest, I wonder if I am too sometimes. For every "that was totally within the realm of developmentally appropriate" moment, there are 3 "this can't be right" ones.




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[peggyfromwastate]

Testing for DS1

Is your motivation in taking him to specialists to get more attention or sympathy for yourself?

No, I didn't think so.

Typically it takes months of wondering and suspicion and emotional turmoil to even think "maybe something isn't entirely right here". It did for me...

I have this absolutely shocking video I took of my son before his dx with Tourette's. We were at the aquarium, and he was at the sting ray tank which is his most favorite place in the world. When he's excited, tics increase. But at this point his tics were off the chart- major neck roll. Anyway I was recording him bc I finally came to the conclusion that this was not just an ordinary tic, and maybe a doc should have a look. I was standing next to my dh and my dad, both doctors and my dad with 30+ years experience. I can hear myself ask them on the recording what they thought of the neck roll, and if they thought Ds may have Tourette's and need to be seen. Both of them said, "no, looks typical." Lol!

Anyway, my point is that sometimes you just have to step out there and make the decision. The other spouse will probably come along at some point. There is a line though that I hope you don't need to cross where you go against your spouse's wish to get treatment-- I don't think you'll get there. It would help to have P go to some specialist app with you.

Hugs, momma. It's hard, but you can't do harm to him by looking into all these options. Ignoring worrisome symptoms could delay treatment which could have a lasting impact at his age. Let the specialists decide if there's something there- you're just a concerned mom who wants to make sure you are covering all the bases.

[MrsK]

I get it. With K1, it was so ambiguous that I wondered if *I* was causing the problem because I was looking for a dx. Now that I have a dx, there are still times I think that I imagined it because he seems so normal. Then he'll have a bad stretch and I think maybe I should have pursued an ASD work up. Trust your gut.