I've been lurking for a few months and finally feeling ready to de-lurk.
My son is 3.5 and got his ASD diagnosis this past fall. Mostly due to repetitive speech and behavior, and possibly some delays with his social/emotional communication. He's quite the chatty little guy, and clingy/affectionate with family members and his teachers at preschool. He is slowly getting comfortable with his peers. He's currently at a Waldorf-inspired preschool while we are in the process of lining up interventions specific to his needs.
I'm still on a steep learning curve so I don't have a lot of knowledge or experience to offer, but I can definitely offer moral support to other SN parents!
My sweet little boy E is almost 19 months old. He was referred to ECI at his 1 year pediatrician appointment because at that point he still wasn't even crawling. He has developmental delays in motor skills and speech. He didn't start crawling until 14 months after PT started, and he is still not walking on his own yet--though PT has him in leg braces that help a bit. (He can walk like a drunk frat boy with assistance.) In November he was also diagnosed with strabismus, so he's been in glasses to attempt to correct it. They haven't done enough, so he'll have surgery to start trying to correct that in April.
All this is really overwhelming, and I'd hoped that ECI would help more, but he only sees them for 4 hours a month which I don't feel is doing much of anything. So I'm really frustrated by that and not really sure what my options are.
I've learned quite a bit from reading things on this board, and looking forward to learning more and taking part in the support system.
Hi everyone! My name is Melissa. I was super active on TB back in the day after our first loss up until my twins were born prematurely. I have dipped my toes into the PAL and IF boards on TCF but have taken a long break since we found out about our second triploidy loss last year.
Way TLDR: My younger 29w preemie twin, now almost 4, was referred for ST and OT. I'm feeling overwhelmed and disappointed.
I would like to hang out here and learn from you guys if that's okay. My youngest twin, S, had an appointment with a developmental pedi yesterday because my gut was telling me something was off. Over the last six months I have noticed a lack of progress in communication and understanding. While his twin, J, was always behind S has now been left in the dust. I can't cite any regression that I have noticed, just a total lack of progress. If S doesn't understand your question he parrots the question back and it can sometimes feel like pulling teeth to get him to converse with you. He flat out doesn't respond sometimes and it's unclear to us if he's not hearing, not understanding, or ignoring. He is very loving with us but has some pretty bad seperation anxiety and doesn't interact well with new adults. He plays well with peers but can be rough and pushy if frustrated. The developmental pedi had some definite concerns for speech and has referred us for therapy, to include play with other kids. She also noticed that he has an immature grasp so has referred for an OT eval. Since we're not 100% sure he is hearing well we are also going to see an ENT to assess his hearing.
His older twin did two rounds of ST through ECI when they were younger and it was great. But I thought we were past it. S has always been so quick to learn and is fiercely independent so even though my gut was saying something was off it was really hard to have it confirmed. He is very ahead educationally so I think it's been easy to overlook the communication deficits until now. I know therapy can be awesome but I can't help but be a little scared for the future.
We were told that it takes quite awhile for our insurance to sort out testing and referrals so I have been told it will likely be two months before we get to start. Is there anything I can do in the meantime to help? Are there any resources you would recommend? We have no official diagnosis at this point and he will go back to the developmental pedi for further evaluation in two months.
Hello. I am not new to the forum, but I am new to this board. Regular on Feb 16, Single Parents Mod(though I am remarried).
I had my second daughter on Feb 20th of this year. She was born with a Congenital Diaphragmatic Hernia. For those unfamiliar it is a hole in the diaphragm that allows the lower organs to enter the chest cavity. This can cause pressure on the heart and lungs leading to underdevelopment or damage to the heart and lungs.
All that being said we were very fortunate to have a "mild case" meaning she was able to have thorascopic surgery 3 days after being born. We were in the NICU for 2 weeks, which is in itself a miracle considering the diagnosis. We are seen by the surgical team once a year to make sure there is no recurrence, our pedi keeps a close on on her for any delays and we were referred to a cardiologist.
At the Cardio appt. she was found to have moderate Mitral Regurgitation that was not seen in the echo done in the NICU. DD was put on enalipril to try to relieve some hypertension and counter act the MR. We are in a holding pattern for now, but have been told that she could have cardiomyopathy (heart failure)... We will know more after the next echo on May 11th. So until they tell me for sure I am praying we get a better diagnosis.
If you read all of that... thanks! It is not easy to talk to people here about it cause they just get sad and anxious, which makes me more nervous.
Post by freezorburn on May 3, 2016 19:04:47 GMT -5
Welcome becwheat, so sorry to hear your new baby is still having issues. Praying that she responds well to the treatment and that the docs are able to give you some helpful info at her next checkup. Sounds like she's a strong girl ... just like her mama!
Hi all. I am a regular on the IF and Pregnant After IF boards, but due to circumstances, I think it is time to find a new board that better suits my life now. So, I thought I would intro here. I have 7 month old twins (5 months adjusted). They were preemies born at 31 weeks 6 days. My daughter is doing great --hitting milestones almost on track for her birth age. My son, however, has had some struggles. He was born with congenital heart defects (moderate to large VSD and an anomalous right ventricular muscle bundle) and kidney disease (multi cystic dysplastic left kidney and "small" dysplastic right kidney). He was diagnosed with congestive heart failure at 3 weeks (controlled with meds) and failure to thrive. He has an NG tube for feeding, though he is allowed to take bottle feeds if he is up for it. He has had bronchiolitis twice (hospitalized once for 10 days). As in love with both of my twins as I am, I would be lying if I said it has been an easy 7 months.
My son is a little behind developmentally for his adjusted age, so he receives physical and occupational therapy once a week each to try to help him catch up before he gets further behind. A lot of his delays are likely due to complications from the VSD (basically, he has very little energy to do what he should be doing). He is scheduled for open heart surgery on June 2 to repair the defects. I am both anxious for and terrified of this surgery.
Having twins is tough enough, but having one that is medically fragile and requires so much extra care for his special needs is that much more difficult. I always feel like I cannot do justice to either of them -- not giving baby girl enough of my time because I am dealing with brother, but not able to give him all the attention he needs because sister needs me, too. My mother in law comes over most evenings, which helps, and my husband pitches in when/how he can... But it is still very difficult to juggle everything.
I guess that is about it. As much as I appreciate my old boards, I just think I am entering territory where I will need a different kind of support -- especially as we go in to the open heart surgery in a couple of weeks. I hope you ladies will have me.
Last Edit: May 18, 2016 11:51:46 GMT -5 by spring78
*************Siggy Warning.************ Me: 39, DH:39 Married 4/2010, TTC since 7/2011. Dx: Officially Unexplained 6 IUIs, all BFN IVF#1 March 2014 31R/21F, 1 transferred, 12 Frosties. BFN FET #1 May 2014. 2 transferred. BFP! MMC. D&C 8/1/14 FET #2 November 2014. 3 transferred. BFN IVF #2 w/PGS ER 1/23, 16R/8F + 4 NEF, 8 made it to blast & sent out for PGS. 4 Normals!!! FET #3 2 transferred 3/23/15. BFP! Betas 4/6: 1662! 4/13: 18775!! It's twins!!
The ladies of May14 suggested I come here for support and information.
I have two little boys, DS1 who is 4 and DS2 who is 2. Ds1 doesn't speak very much and what he does is a lot of jargon with real words thrown in. He is currently being evaluated for ASD (developmental pediatrician was the one who suggested it but indicated a need to see a psychologist (?) for diagnosis).
I'm trying to figure out my next step: I need to follow up with the OT/ST and with the state (they provide some financial assistance regardless of income). I'm concerned about our insurance as they are self-funded and do not cover therapy (ABA as well as OT/ST) if there's a diagnosis of autism (I called when I initially had him evaluated with the speech therapist).
Often the dx of ASD is made by a team. Often the dev pedi works as a kind of general contractor who will bring in others for their specific areas of expertise. A psychologist is almost always a part of the mix, especially for running the diagnostic interviews, scales and ADOS. Dev pedis often refer to OT and PT to look at motor skills.
Some states, Ohio is one, have an Autism Waiver that could be used to fill in what your private insurance doesn't offer. In the early years, many families use these for therapeutic ASD schools. In other places, a Katie Becket Waiver is offered that can allow you a non-means tested Medicaid card and access to another medical policy. In PA, non-means tested Medicaid often comes with a TSS worker who can help work on skills being taught.
Are you working with your school district? If found eligible, he might be able to get services there. In any case, the process with the school district moves slowly, so you'd want to start that process asap- no later than December for kindie next year.
mrsbuttinski yes we are working with the school district and, from your suggestion, I called them. Afterward, I feel a bit better, more in control and with a somewhat better plan of action. So thank you!
One thing is that I'm going to look at a second provider as I feel the pediatrician was trying to fit Ds1 into her box. I've had DH pick up his iep and speech eval so I can read them.
Hi everyone. I was on TB with the same screen name. I posted a brief intro with my new thread this afternoon (regarding the autism mandate in TX) and then saw this one so I decided to add my name to the list. I'm in Houston, TX. DH and I have 2 sons. Older (5.5) has ASD, younger (4) does not, we feel pretty certain.
Post by aladynevertells on Dec 5, 2016 20:07:14 GMT -5
Hello everyone! I've posted before on the multiples and preemie boards but took a long break due to life getting in the way! Anyway, I have 4 kids, my younger 3 are nearly 3 yr old GBB triplets. One of my little boys was diagnosed with ASD this fall and his triplet brother is on the waitlist to be assessed.
Post by nanaosaki06 on Jan 26, 2017 12:48:52 GMT -5
Hi, I'm usually more active on other boards, but I feel like I should intro on this one as well. My son just turned 4 years old, and 2 days ago he was formally diagnosed with ASD level 2. We've been on the journey for answers for some time now. He's always been verbally and gross motor delayed, plus he had some sensory issues. We got him into speech and occupational therapy last year and put on the wait list at Seattle Children's Autism Center. A year later we finally got the call, and we finally got our answers. The thing that's hardest for me isn't coping with his diagnosis, I've been thinking it was ASD for some time. However, its just how obvious his diagnoses was to other people. Anyways, I'm hoping you all will help me along this journey, as its just starting. Thanks!
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