Into: New to all of this

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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gingernlw
Posts: 6
Joined: Thu Apr 30, 2015 12:44 pm

Into: New to all of this

Postby gingernlw » Thu Apr 30, 2015 12:57 pm

Hi, I am a 34 year old mother to 3 beautiful girls. My youngest is 20 months old now. I've had concerns about her development pretty much since she was about 4 months old. At 18 months she was evaluated by EI and they determined that she is significantly delayed in the social, language, fine motor, and cognitive domains. I think the cognitive is so low because it's so closely tied to language. It's clear that she understand us and she follows directions appropriately and you can see her problem solving. She is currently being evaluated by the public school system because if she's eligible (which she will be) she can start Special Ed preschool in the fall. She's also on the waiting list for a developmental pediatrician, but it's crazy how difficult it is to get into one. She should see one sometime this month or early next month. Right now it's a lot of wait and see. I don't feel that EI is really that useful and I'm anxious to see the doctor so I can get referred to more therapies as necessary. I've taken the online M-CHAT and the follow up. She screened moderate to high on both; although I know that they have a high false positive rate. The reason I'm here is because I do believe she has an ASD. She is generally sweet and tries to be social, but her social behaviors are just... off... for lack of a better word. She has some "stims" that I can easily identify and I've even recorded for when we do see the doctor. She doesn't talk; she babbles a little and will try to repeat some sounds but there is only one identifiable word. She had a couple earlier on (around 12 months) that were ultimately lost. She doesn't play with most toys correctly, although I haven't noticed any patterns to her play with toys such as lining up or spinning wheels. She likes playing with her older sisters and adults, but kids her own age either make her nervous if they approach her, or she'll just ignore them if they ignore her. She doesn't like other toddlers to touch or hug her. But if they will play or just kind of hang out near by, they don't bother her at all.

I've been researching as much as I can and I see that girls on the spectrum, especially the higher end (yes I know the debate regarding HF and LF labels and I mean no insult to anyone, just trying to explain my daughter), tend to get over looked until much later because their natural innate ability to be social or "fake it" works well until adolescence. I've also been trying to find examples of stimming beyond hand flapping and spinning.

So anyway, sorry for the novel. I'm here at least until a doctor tells me my daughter doesn't have Autism; however I'm fairly certain that's the direction we're headed. So I'm interested n any information anyone wants to provide.

Thanks!

Winnie
Posts: 4226
Joined: Sat Mar 18, 2006 2:48 pm

Re: Into: New to all of this

Postby Winnie » Sat May 02, 2015 9:20 am

Hi gingernlw -- welcome to the forum.

The good news is that she is so young -- regardless of the reason for her developmental delays early identification and intervention is a good thing. Most parents can identify with your frustration about waiting lists!

Let us know how it goes -- if she enters the public school preschool this fall, you will need to advocate for services there too. I agree with what you said about EI -- where I live the frequency of services alone renders it fairly ineffective.

While waiting it might be a good idea to network with other parents in your area (and online) to prepare for what to expect, what questions to ask, and what type and frequency of services you may want to advocate for. Good luck!
Winnie
"Make it a powerful memory, the happiest you can remember."

gingernlw
Posts: 6
Joined: Thu Apr 30, 2015 12:44 pm

Re: Into: New to all of this

Postby gingernlw » Sat May 02, 2015 11:14 am

Thank you for the welcome. Thankfully I'm a social worker in training so I'm familiar with advocating and finding resources as well as researching. I've already been talking to friends who have kids on the spectrum as well as those with kids with other special needs.
I agree with you regarding the frequency of service. She sees a speech therapist twice a month! She can't talk! She needs more intensive therapy. And wth does the developmental therapist supposed to do? Because I really don't see much going on.

Anyway, thanks for responding :)

TeamGabe1
Posts: 1
Joined: Sat Jul 11, 2015 9:04 am

Re: Into: New to all of this

Postby TeamGabe1 » Sat Jul 11, 2015 9:26 am

Your little girl sounds a lot like my little boy Gabe. He'll be 2 1/2 on the 25th of this month, and I noticed very similar things about him at about 20 months. You're super fortunate to already know the ropes of social work. I'm not a super expert, but since our kids sound so similar, I'll tell you what's happening with us.

The first thing I did was contact our state's Birth to Three office. A social worker and early childhood teacher came to the house and evaluated him. They found a speech delay and some gross motor delays, along with some red flags for ASD (toe walking, repetitive behaviors, hand flapping). Because they don't diagnose ASD and because I mentioned my concern, they gave me a list of area professionals who could evaluate for ASD.

I took him to the Wisconsin Early Autism Project (we live near Milwaukee) and he was diagnosed with moderate to severe ASD (due in large part to his nonverbal status). Since our insurance doesn't cover autism therapies (and since we make juuuuuust enough money to be "too rich" to qualify for medicaid for the kids) we're still waiting on the state for a completed disability determination and a spot on the waiting list for state Medicaid Autism Waiver dollars.

In the meantime, we started speech therapy with our Birth to Three program. Gabe's teacher comes every Wednesday morning and works with him for about 45 minutes. We've been doing this for about 6 months and just in the last month has Gabe shown some improvement with his expressive language and eye contact.

I hear your frustration with the progress (or lack thereof) being made with your daughter. I think that's the hardest part for me - the lack of guarantees and not being able to tell if a therapy is working. FWIW, I have no idea wth a developmental therapist is supposed to do, either. Please let me know if you find out!

Hugs to you!

Hang in there, and please let us know how it's going.

AshleySpringer
Posts: 4
Joined: Sun Aug 30, 2015 12:39 pm

Re: Into: New to all of this

Postby AshleySpringer » Sun Aug 30, 2015 1:10 pm

Welcome!!

Hopefully after the meeting with the developmental pediatrician you will get hooked into appropriate therapies. From what you mentioned, sounds like she needs some fairly intensive speech services and most likely occupational therapy as well. Make sure those therapists are familiar will ASD (if, as your gut is telling you, that ends up being the diagnosis). As others have said you have caught this early, and early intervention can make a huge difference with the right team.

What services are you currently receiving through EI, and what could make them more helpful? Thinking through that can help you determine the right team as well.


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