Intro

kristinark · April 2014

I was an active lurker right after birth throughout various boards.....just finding my way back.

My daughter just turned 2 at the end of February. We have been with Help Me Grow, which is an early intervention program for about 8 months now. We have been attending speech therapy and occupational therapy for about 6 months. We have also placed her in two mornings a week of child care to help her interact with other children...also for about 6 months now.

We do not have any real diagnosis at this time besides a speech delay and forms of social anxiety.........Our pediatrician states that the spectrum of autism has broadened so much over the years that "yes" she does fall into the spectrum, but its hard to tell if these issues might just work themselves out over time.

I am sure where I am at is very common. I feel we are stuck in limbo right now. Now sure what to do! I am sure this message will come across as bouncing around trying to tell our entire life story, I apologize in advance

Some back story.....I feel that we have had a gut feeling almost since infancy that something was not "right". Our families have always brushed us off and said nothing is wrong....she is so perfect and adorable....which of course I agree with...but still have these lingering gut feelings. From birth we experienced "colic" type symptoms. Uncontrollable crying for hours upon hours, little to no sleep, refusing a bottle, only comfort was nursing. "Behind" on all milestones, rolling over, sitting up, babbling, eye contact, crawling, walking, play skills, etc, etc. But eventually caught up! Severe "stranger danger" and social anxiety. We have improved in a lot of areas but still we have no language and lots of social issues. Family says she will talk when she wants to talk etc, etc. I do not expect her to carry on a conversation with me, but at 2 I feel she should have several words in her vocabulary....(momma, dada, no, more).

So at this point I continue to question myself....are we just working with a speech delay....or is there more at the core of all of this. Do we stick with all of our therapy....or do I listen to my family and stop going.

Thank you so much for taking the time to read all of this, I really hope some of this makes sense!

typeset · April 2014

Trust your gut.

MirandaHobbes · April 2014

Very commonplace, and not very enjoyable. We were in limbo until around DS' third birthday when he was formally diagnosed by a developmental pedi. We did early intervention (ST and group social skills). I was pretty convinced it was just a speech delay. The other milestones like eye contact and joint attention were spotty and too nuanced for me to really agree with- but there isn't much you can do but just forge ahead with everything you can do. It made me feel better in the beginning to look at is as getting him "caught up" although I didn't realize that a developmental delay isn't something you "catch up" on. By the time DS turned 3 he was speaking but it was clear it was not typical. And some of the things he started doing were so textbook autism I couldn't ignore them. So yes, you're in limbo, but hopefully it will become clearer as she gets older. As you've probably seen by reading other posts on this board, sometimes the road to diagnosis is long and frustrating.

Even amidst all of my denial I would never had stopped any therapy. I remember venting to my mom about a bus situation we were having- DS started riding the bus to early intervention when he was 20 months!- and she interrupted and said, "why don't you just quit all this?" And it really dawned on me that despite the trials and frustrations, I would be doing a tremendous disservice to DS if I just gave up and didn't trust the professionals opinions. I know everyone says trust your gut, but my gut was really confused I relied on professional advice and thank goodness I did. DS is in a mainstream kindy class but needs a lot of help and support.

Junebug060609 · April 2014

typeset said:
Trust your gut.

This was verbatim what I was thinking.

Trust your gut. Get an eval.

ToastieSimons · April 2014

Ohio is very stingy with services. DS1 was receiving PT 1x/week, OT 1x/month and ST 1x/month. He wasn't standing/walking, babbling or self feeding at 2 and that's still all they would give us. We moved to the east coast and he then received PT 2x/week, OT 2x/week, ST 2x/week and DI 2x/week.

I would think if they're willing to give you services then your child needs them. Don't stop going. Trust your mommy gut. You know your child best.

Does your HMG have a 2 yo preschool? Have you looked into that? I know ours started at 15 months for children with social/behavioral issues. Have you talked with your pedi about private services? I know there are lots of facilities for ASD in Ohio.

kristinark · April 2014

Thank you ALL for the responses! I really do appreciate it!

"ToastieSimons" HMG has recommended preschool at 3 yrs....which we are planning to do. We hope to get her into public preschool, but I am finding that this is very limited in our area of town. It looks like she will mostly likely have to go to private preschool. Also....it is a good way to think about it....if they are willing to give the services, then she needs them!! (we just get hung up with our family, stating that "doctors" just want to push unnecessary services on people!)

"MirandaHobbs" You are also right, I need to rely on professional advice!!

Thanks again!!! This venting really helped and I feel energized to refocus and move forward!

ToastieSimons · April 2014

kristinark said:

Thank you ALL for the responses! I really do appreciate it!
"ToastieSimons" HMG has recommended preschool at 3 yrs....which we are planning to do. We hope to get her into public preschool, but I am finding that this is very limited in our area of town. It looks like she will mostly likely have to go to private preschool. Also....it is a good way to think about it....if they are willing to give the services, then she needs them!! (we just get hung up with our family, stating that "doctors" just want to push unnecessary services on people!)
"MirandaHobbs" You are also right, I need to rely on professional advice!!
Thanks again!!! This venting really helped and I feel energized to refocus and move forward!

do you have a county board of developmental disabilities? I know most BDD's have their own preschool. Not sure what county you're in but in Wayne County it was serviced at Wooster School District. In Medina County the MCBDD had a preschool program that started at 15 month -3. And then you either went to Medina city schools or MCBDD had a preschool program depending on the disability. Do you have an achievment center? this is how medina county was set up https://www.mcbdd.org/

In Ohio they like to keep special needs in a mainstream setting. Each school is supposedly set up for special needs and depending how many children are enrolled depends how many teachers and aides they will have in the classrooms. From what I was told most city schools fight to keep special needs students in the classroom because they receive more funding from the state. There was also the option of a 100% special needs classroom at the BDD but that you may have to fight for that. You will also need to have her evaluated by the public school district which they should do prior to her turning 3 so that she can start services on her birthday. If she qualifies for public preschool they will send her. If she expresses a lot of social issues they will term preschool as a social therapy versus a child who needs a singular therapy that can be given solo.

kristinark · April 2014

ToastieSimons said:

kristinark said:

Thank you ALL for the responses! I really do appreciate it!
"ToastieSimons" HMG has recommended preschool at 3 yrs....which we are planning to do. We hope to get her into public preschool, but I am finding that this is very limited in our area of town. It looks like she will mostly likely have to go to private preschool. Also....it is a good way to think about it....if they are willing to give the services, then she needs them!! (we just get hung up with our family, stating that "doctors" just want to push unnecessary services on people!)
"MirandaHobbs" You are also right, I need to rely on professional advice!!
Thanks again!!! This venting really helped and I feel energized to refocus and move forward!

do you have a county board of developmental disabilities? I know most BDD's have their own preschool. Not sure what county you're in but in Wayne County it was serviced at Wooster School District. In Medina County the MCBDD had a preschool program that started at 15 month -3. And then you either went to Medina city schools or MCBDD had a preschool program depending on the disability. Do you have an achievment center? this is how medina county was set up https://www.mcbdd.org/

In Ohio they like to keep special needs in a mainstream setting. Each school is supposedly set up for special needs and depending how many children are enrolled depends how many teachers and aides they will have in the classrooms. From what I was told most city schools fight to keep special needs students in the classroom because they receive more funding from the state. There was also the option of a 100% special needs classroom at the BDD but that you may have to fight for that. You will also need to have her evaluated by the public school district which they should do prior to her turning 3 so that she can start services on her birthday. If she qualifies for public preschool they will send her. If she expresses a lot of social issues they will term preschool as a social therapy versus a child who needs a singular therapy that can be given solo.

Thank you for the details! I guess I am not exactly sure how everything works yet. My understanding was that HMG wanted her to go to preschool at 3. We are part of the Cincinnati public school district. I contacted the district at the advice of HMG. They stated that our neighborhood preschool is only open to children under the poverty level. Since we do not qualify for that our other option is preschool at the magnet public school in our neighborhood, which is a Montessori school, however there is an extensive waiting list. The Montessori school is almost $3,000 per year for 3 - 1/2 days a week, I guess even though it is public school preschool is not included....So we are going to place her on this waiting list, but we can not be added to the waiting list until this fall. HMG also stated that they might be able to get her moved up the waiting list. They said that 90 days prior to her turning 3 they will be with the district and recommend that she attend the Montessori school for preschool.....and hopefully this meeting would get us bumped up on the list. I guess if we don't get into the Montessori for preschool, then we will have to look into private preschool.

ToastieSimons · April 2014

kristinark said:

ToastieSimons said:

kristinark said:

Thank you ALL for the responses! I really do appreciate it!
"ToastieSimons" HMG has recommended preschool at 3 yrs....which we are planning to do. We hope to get her into public preschool, but I am finding that this is very limited in our area of town. It looks like she will mostly likely have to go to private preschool. Also....it is a good way to think about it....if they are willing to give the services, then she needs them!! (we just get hung up with our family, stating that "doctors" just want to push unnecessary services on people!)
"MirandaHobbs" You are also right, I need to rely on professional advice!!
Thanks again!!! This venting really helped and I feel energized to refocus and move forward!

do you have a county board of developmental disabilities? I know most BDD's have their own preschool. Not sure what county you're in but in Wayne County it was serviced at Wooster School District. In Medina County the MCBDD had a preschool program that started at 15 month -3. And then you either went to Medina city schools or MCBDD had a preschool program depending on the disability. Do you have an achievment center? this is how medina county was set up https://www.mcbdd.org/

In Ohio they like to keep special needs in a mainstream setting. Each school is supposedly set up for special needs and depending how many children are enrolled depends how many teachers and aides they will have in the classrooms. From what I was told most city schools fight to keep special needs students in the classroom because they receive more funding from the state. There was also the option of a 100% special needs classroom at the BDD but that you may have to fight for that. You will also need to have her evaluated by the public school district which they should do prior to her turning 3 so that she can start services on her birthday. If she qualifies for public preschool they will send her. If she expresses a lot of social issues they will term preschool as a social therapy versus a child who needs a singular therapy that can be given solo.

Thank you for the details! I guess I am not exactly sure how everything works yet. My understanding was that HMG wanted her to go to preschool at 3. We are part of the Cincinnati public school district. I contacted the district at the advice of HMG. They stated that our neighborhood preschool is only open to children under the poverty level. Since we do not qualify for that our other option is preschool at the magnet public school in our neighborhood, which is a Montessori school, however there is an extensive waiting list. The Montessori school is almost $3,000 per year for 3 - 1/2 days a week, I guess even though it is public school preschool is not included....So we are going to place her on this waiting list, but we can not be added to the waiting list until this fall. HMG also stated that they might be able to get her moved up the waiting list. They said that 90 days prior to her turning 3 they will be with the district and recommend that she attend the Montessori school for preschool.....and hopefully this meeting would get us bumped up on the list. I guess if we don't get into the Montessori for preschool, then we will have to look into private preschool.

that's the one thing I hated about Ohio's EI is that it's county based meaning every county has different resources and different services. If you change counties you can be given different frequencies of services and completely different programs. I know Kasich was trying to shut down all 2 yo preschool programs because they were "unnatural" and was trying to get more home based services. We had to go to a center for all our services. GL, and push HMG to help you transition to the school district.

Assembly_Reqd · April 2014

I am also on team "Trust you Gut". If your family cannot be supportive of your parenting choices then I guess they cannot be kept apprised of them either. Find a support system that "gets it" We do.

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