ISO MAMAS ALREADY EXPERIENCED W/THE WORLD OF AUTISM

[chiqanita]

DSx2 (twins) will be 3 in Aug. Our school district is assessing them for their pre school program for children w/delays &/or disabilities. The psych already commented that she believes they have full autism. Still need to see the diagnostician and speech spec.

I have some questions that an already experienced mama of an autistic child might be able to answer for me. So if you're out there in the BBB I sure could use some guidance and a shoulder to lean on. Needless to say this news was and is heartbreaking. I want to educate myself as much as I can before the ARD in August.

Please PM me.

TIA

[gatorruth]

I just pm'd you...

Ruth

[Twoboos]

No personal experience here, but I have a close friend w/2 autistic sons. They have come a long, long way since they started getting early intervention services.

You might know of these already but two sites to check out are autismspeaks.org and cureautismnow.org.

Good luck and many hugs to you and your boys!

[ajmom]

I'm not a mom of a child w/ autism, but I'm a diagnostician and taught special ed (including children w/ autism) for many years. Let me know if I can help you with anything or answer any questions!

[hardysmom]

2 of my 3 kids were referred for testing in suspicion of autism and while both have some issues (sensory and fine motor delays), neither, despite my PANIC, test on the spectrum at this point. Don't rush into this until you've been through the diagnostic process and have time to review the testing AND get a feel for whether the report reflects your kids, as you know them.

DS#1 has sensory issues, motor delays, and was "quirky" so on the advice of a diagnostic ped, he was given a neuro-psych eval at age 4. The PhD did everything right, even observing him at school, and her report was for a preliminary diag of classic autism with a review in 6 mo. to see if Aspergers or "high-functioning" autism would be a better fit.

We knew he had some issues, but some of the things she noted were just way off of our experience-- for example, she saw a lot of flapping, which we'd never observed, unless he was in sensory overload, which was a whole other issue. His verbal IQ tested at 150+ but he refused to do a good chunk of the non-verbal test, which was unlike him. Turned out that the PhD, who was pretty young and specialized in spectrum disorders, had not taken into account the extent of his sensory issues and motor delays- it wasn't that he was flapping, she was putting stickers on his hands and he was in a panic trying to get them off. The more she pushed his sensory buttons, the less communicative and cooperative he became which mimicked some typical spectrum behaviors. At one point, he climbed under a table to hide from her.

There is a lot of debate about over-diagnoses of Autism v. a true epidemiological increase in occurrence. A lot of kids who would normally be called "quirky" or may have other developmental issues are being put on the spectrum-- it isn't necessarily a bad thing since the treatment for spectrum disorders can be beneficial for a lot of issues, but as a parent, I know the label itself was very scary.

I also have 3 yr old twins and can say, first hand, that they develop differently. They have such a unique social relationship with each other that sometimes some twins are just a little odd when viewed in a solo social setting. One of my twins barely spoke, at least in a way you could understand, until about a month ago when she started spitting out long, complicated sentences. We did early intervention for speech, PT, and OT... Oh, yeah, and at HER 3 yr old check up, she was referred to a developmental ped who specialized in autism... by the time our appointment rolled around, all the concerning issues were gone.

Point is, while the diagnoses of spectrum disorders continue to rise, it is becoming a catchall for kids with issues which may not be what a layperson would consider autism. Saying a kid should be tested can be just a general observation that "something is up." Plus, if your kids are placed on the spectrum, there is a HUGE range of severity... some kids have truly devastating issues, others are just like a lot of the brilliant people you probably know who have rich lives, but march to their own drummers... All can be productive, loved members of their families.

I am not saying that you don't have cause for concern, just try not to panic until you REALLY have the information specific to your kids in front of you. A "feeling" from a school psych that may or may not have had a good rapport with your kiddos, is just a feeling, that is it.

Stephanie

[chiqanita]

Thank you so much Stephanie for sharing your experiences and your personal story. I will keep all you said in mind.

[chiqanita]

Thank you, just read it and responded.

:)

[chiqanita]

Thank you Twoboos, I sure needed that hug and appreciate the gesture.
I did know about one of the sites and will check out the other.

[chiqanita]

Thanks, I will PM you in a minute with soem questions!

[momofjandl]

First off let me give you a pat on the back for asking and trying to educate yourself. Good for you!

There are a lot of moms here with tons of experience on all levels. Their advice and support have helped me many times.

My 4 yr old son went to early intervention at 18 months to 2.5 yrs for a speech delay. He ending up speaking eventually-partly due to his own schedule. He's always been at the tail end of the developmental sprectrum.

He started preschool for the first time this year and his teacher noted several delays compared to the other children. We had him tested through the public school and he is now on an IEP, meaning he gets servcies through the public school. We have placed him in their prek program to help with his issues.

Here is a list of his concerns delays:
Social delay-is very shy and awkward around new kids and large groups of kids. Took a long time to get used to preschool and even left on his own on several occasions.

Becomes fixated on one thing at a time. His teacher thought he had aspergers.

Has many sensory issues.

This is just a short list. But I've noticed much progress this last year. Partly b/c again-he's on his own schedule. Partly-this is who he is as a person and we've learned how to work around it. And partly b/c we are now aware.

I have a friend whose daughter has PDD-on the autistic spectrum. She has been getting services for about 2 years (she's now 4)and has made tremendous progress. Only 2 yrs ago she did not make eye contact or communicate. Now she makes eye contact and signs.

The real key is catching it early and you are doing that. I honestly believe that all people have some sort of autisitc or sensory tendency-no matter how small. Whether it's not liking the feel of clothing. Or maybe it's the person who is severly uncomfortable in social situations.

Your children are very young and twins at that. It is my experience taht twins are usually behind their peers anyways. I am not saying you shouldn't worry or that nothing is wrong. I don't know you or your children. Just try to take each day one at a time and do what you are doing. Being a loving and caring mom. You really are catching it almost as early as possible and that makes a lot of difference.

Please feel free to email me if you just need someone to vent to or have any other quesitons. I'm in MA, so if you are nearby I have lots of resources to tell you about. Also..not sure if anyone rec any books but there are many on sensory diet and other issues. I can give you a list if you need it.

Good luck and hang in there. I know it can be hard.
Ruth

[crayonblue]

I have no advice but wanted to send you a hug! My youngest is developmentally delayed and all the possiblities scare me half to death.

In my humble opinion, professionals need to be VERY careful what they say because we as moms are so fragile at times and needlessly worry when presented with worst-case scenarios. I know I have freaked out about 100 times since bringing Carmen home from Guatemala due to all the "possiblities." I hope you get answers and that they are very reassuring answers!

[kochh2]

hugs... you must be feeling like you don't know where to look next for info-- I dont' have any DC's on the spectrum, but i am a PT working in a very advanced school for children with neurological delays, mainly Autism... i have an autism ribbon on my car :) despite my promises that i'd never have a ribbon on my car.... I love what i do! I can say that I have learned more in the last 3 years of working in this school about autism than many regular pediatricians know, and while it is a very scary journey to begin on, know that you are NOT alone, and there are many things out there that seem like "Magic bullets", but with time and a good program at school, those magic bullets may not be needed, or may not even work... everyone is different, but i do know that from th eparents of the children at my school who have shared their stories, I walk away each time saying, there is a whole group of superheroes walking among us.... parents of children with autism (and other special needs).... so even if they don't get THAT diagnosis, i still say i admire you without even knowing you!! PM me if you want and motor info... i'm happy to share, and pass along the name of a woman who's daughter is 22 with autism,and the reason for our school- she knows more about autism and the most current research than most parents-- she is extremely involved at all levels with teaching and researching... hugs...

[chiqanita]

Thank you! I will PM you tomorrow when I have more time. I appreciate the personal story and experiences.

[chiqanita]

I understand what you are saying. I remember when you first posted about Carmen, so glad she has a loving mama like you. Best wishes to your family.

[chiqanita]

I sure appreciate your thoughtful response. I will keep in mind what you said, sure wish I was in MA but am not. Am in the south. Best wishes to you and your DS.

I will PM you tomorrow when I have more time to write.