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@catlady: hi! i can feel you on the SLOW pace. We've been in EI for about 5 months now and I can say that there is DEFINITE improvement for sure at this point. It still seems sloooowwww, but when you step back and see the progress, you can see how far they come in a short time. Stick with it. They will help you learn some tricks to do at home, and I bet you'll see some great improvements in the next few months!
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@catlady: I hope that your begin to see progress soon. In my state it didn't take that long to get EI started BUT it did take awhile to get speech, which was our main reason for started EI. I feel like I was slowly dying just waiting but now, a year and a half later, he's a beast at so much! And you're LO will be too!
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Hey Mamas! I hope you're all doing well... We have our 6 month evaluation coming up in January and they were saying the state is changing this check in to be 100% parent interview instead of testing/interacting with the child... What has been your experience?
We're actually going to do a combo of both since this is new procedure for MA EI, but I feel like as a parent I'm so biased and want to make sure I'm providing correct answers... On the otherhand, if LO is having an off day when we do the evaluation, that would throw the whole thing off!
THANKS, Hope you all had a wonderful holiday.
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How is everyone? I've been wanting to update for a while but it feels so overwhelming. 6 months ago, we started the referral process with the county EI service and it got us nowhere. After months and months, they couldn't match us with a speech therapist (apparently there is a huge shortage here.) I feel so dumb, but I had no idea you could just use your insurance...it's just that everyone kept pointing me to the same facility so I didn't know. To think, we lost 6 months of therapy.
DS is now 2.5 and we started (thank the Lord, this was hard to secure also) weekly speech therapy. They tested him and said that he is at a 1% receptive and 3% expressive. So, basically, 97-99% of kids his age are more advanced. They did say that this likely a low estimate because he seemed to be refusing to speak which is his personality. He's very stubborn. I just feel...ugh...like how can we ever get past being 99% behind? I feel defeated.
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@crazydoglady: that’s horrible that they never matched you with a therapist. Makes me so angry! I live in a big city where there are therapists but the bureaucracy is horribly slow. My son turned 3 and aged out of EI so I have been paying out of pocket for speech therapy and hoping my insurance will reimburse some. The actual providers who accept my insurance are hard to find. We are waiting for preschool evaluations to be done and then we have to find a school that has space for him. Oh the stress. But he’s made huge progress in his speech so I’m very proud of him and think it’s worth every cent. We recently started music therapy and are starting OT next week.
I hope speech is helpful for your little one!
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@magnolia: Thank you! We were supposed to start with speech therapy in October but it never happened. So frustrating. We really like our new speech therapist and it's free once we meet our pretty low family deductible.
I'm glad to hear your LO is thriving! -
@crazydoglady:
heyyyy! So glad you revived this thread. It's awesome you've made some progress and he's getting his services. I pretty much had the same experience with EI where I am also. The case manager pretty well told me they didn't have the services to support DS and it would be better if we just went private 
. Well we did go private and DS has been in speech for almost 3 months now. I don't know percent wise where they placed him, just that at 2yrs old he's at the 9 month old level. He's also currently still not verbal. He seems to be starting to understand slightly more and he'll answer to his name about 50 percent of the time now, where before it was zero. He seems to be making progress, it's just very slowwwwww lol.
@magnolia: I hope your preschool Eval goes perfect! -
@crazydoglady: that is so frustrating, I’m so sorry you had to wait all those extra months for therapy to start.
DS1 is now 2y9m and has been going to speech therapy for 6 months. I see little progress wins but his speech is still unintelligible most of the time for others. For a long time he was saying “didi” for baby, then started saying “bibi” and last week started saying “baby”. I was so excited I recorded him to save that little progress memory forever!
He has also started stuttering which I know is totally developmentally normal for his age, but this we noticed during one of his sessions he’s doing some secondary characteristics associated with stuttering. He’s been intensely blinking his eyes, pulling his head back and up and grimacing while he’s stuttering. His therapist wants to keep a close eye on it and possibly refer us to a neurologist if it continues to be persistent. We mostly notice him doing that if he’s tired or if he’s trying to compete with background noise or talking around him. We still have a few years to see if this stutter is developmental and will go away on its own or if he’ll require therapy for it. She said at this age there isn’t much they do for it therapy wise, but she gave some good tips for us to implement at home.
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@arosebyany: Isn't it awful? I was so upset with EI that I asked, "if you don't match children with services, then what do you actually do?" I was so upset. So, one speech therapist called us and asked if we could do morning appt and I said we needed pm so she said she would tell our caseworker. And apparently that was our ONLY chance with EI. No one told me that (Sorry if this is repeat...)
I'm so glad your little guy is finally getting services and is making progress. -
@Boopers: I'm so glad you were able to record him! I hope the stuttering thing resolves itself, but I know it can be totally normal.
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@crazydoglady: @Boopers: @arosebyany: @magnolia:
Hey Mamas.... how are your little ones doing?!?! Any progress updates to report?
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@hellobeeboston: we are seeing some progress. More people say that they can understand him, but he still has a lot of progress to make with his articulation and fluency. We are pretty certain that the stuttering that he developed in December is a true stutter. We have a follow up with his neurologist in 2 weeks and I think at that point we are moving forward with an MRI to see if there are any underlying neurological causes for the stutter.
He is still receiving private therapy 2x a week and recently qualified through our school district to receive additional therapy 2x a week starting in August so I’m so happy that he will be getting a lot of support.
We had his 3 year well visit last week and they administered a hearing screening. He failed both ears
Luckily, we already had an ENT appt scheduled for the following Monday to check his tonsils and adenoids to see if they were contributing to his speech issues. So while we were at the ENT, an audiologist gave him a full hearing screening which he failed. He has mild hearing loss in one ear and mild to moderate hearing loss in the other ear. The ENT said that it looks to be temporary due to excess fluid in his ears. He said that he wants us to give him an antihistamine for 6 weeks to see if it helps drain the fluid. If he still has fluid in his ears at his followup next month, then we are going to have tubes put in to help drain the fluid. He wasn’t concerned about his tonsils, but said his adenoids might be an issue, so we are also checking those again at his followup.
I feel like we are getting closer to figuring out underlying causes for his articulation and fluency issues, but it’s a lot to do before we get answers!
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@hellobeeboston: I just looked at my last post on this thread, which was right after our very first EI session. D is actually coming up on his 6th month assessment this week and I'm excited and interested to see how he will do.
We are in EI for feeding delays and we also see a feeding specialist at a hospital once per month. When we started, he was almost 12 months old and had never attempted to put food in his mouth, he refused to allow us to feed him, and if he did somehow get food in his mouth, he gagged and spit it out.
There was literally no progress at the beginning but we had a couple turning points a few months in when he finally realized that there were foods that he liked and also that he could feed himself. Since then we've had slow but steady progress. He is now 17 months and his breakfast this morning was mushed up bananas (which he fed himself using a spoon), a green smoothie (which he drank using a straw), a small soft muffin, and some graham crackers. He eats so much every day now and I'm so proud of him.
He's still very far behind his peers in terms of skills like chewing correctly, and he has a long way to go before he will be able to handle "typical" foods for his age (for ex. EI has advised us that he shouldn't even eat cheerios yet). However, he is like a totally different kid than he was only 6 months ago and I am really hopeful that he will fully catch up before he ages out of EI or maybe even earlier.
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@Boopers: Hey there - wow, a lot going on for you guys! Hopefully the tubes clear up the issue of the fluid. Does he get a lot of ear infections? My nephew did and also failed a hearing test, but then after the tubes went in he passed! It has also helped his speech... Also, that's great about the extra support.. fingers crossed for you!
@catlady: great news about the improvements! it's excellent that you're seeing progression. Hope the 6 month eval goes well!!
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I am so happy to see this thread still going strong!! I hope everyone is having a positive experience with their EI process. DS has aged out of the younger children program over a year ago and at the end of the month would have made it to a year in his new program. The explosion of language has been amazing! I hope everyone else is having just as a positive experience as well.
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@hellobeeboston: Thanks for bumping! I have been meaning to update for a while.
DS is doing GREAT in speech therapy. Our speech therapist doesn't think that he has apraxia or any underlying cause for his speech delay. She said, "I think this is just how he learns language." She is amazed by his cognitive reasoning which is totally awesome when you are so concerned about your kid's delays. I am trying to think of specific examples, but he has developed so many words. We can actually talk to him (though it's very short answers.) He can recite the entire book Brown Bear (we have to say each word first) but in December, he wouldn't repeat ANYTHING after us. I asked what he wanted to read last night and he said, "Brown Bear." He has started putting words together. He fronts his sounds so g sounds like d and k sounds like t, but he is progressing and he is trying. He still babbles and "swallows" his words, but it's lessening. Sometimes I get sad when I see how advanced his peers are in speech (he's nearly 3,) but I also need to respect that this is where he is and it's about progress, not perfection. To say I am proud of him is an understatement. I feel like I am gushing and am totally cool with that.
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@bubblegum: @hellobeeboston: @catlady: @Boopers: I am loving reading all these progress stories!! It's so encouraging and makes you feel good about all the effort, time, and heart this takes.
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DS2 is finally making some progress in speech! He is really trying to use words more often now, though I am often the only one who understands without context clues, lol. He is also coming up with some random sentences (out of the blue), but rarely repeats them : \. It looks like we will be dropping OT in a few more sessions, though, as he is catching up on age-appropriate skills :). He just tested with the local school system to see if he qualifies for any school based services, as he ages out of early intervention soon.
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I want to follow this board but just don’t have the energy in me to type our whole EI story out tonight. Thanks for creating the thread though.
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@crazydoglady: Awesome update! Yeah, it's hard to compare, but its great that you're just looking at the incredible progress made in a short amount of time
And the good news is getting these interventions early will totally catch him up in the long term.@tlynne: good update! We're aging out of EI this fall, and so they've contact the preschool to see if he will qualify for services through them at that point. So far, I haven't heard anything from them... We'll see. He would need to qualify in TWO areas to be able to attend. His speech is really catching up, but he's probably still behind. And his other area of concern (social) is VASTLY improved and (I think) not even an issue anymore, so we'll see.....
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@hellobeeboston: thanks for reviving this thread! It’s good to read everyone’s updates
My son is doing pretty well. He has aged out of EI and is attending a preschool where he receives speech and OT. We’re still doing some private pay therapy as well. His social skills have really bloomed, he has several close friends who he knows by name and asks to play with. His speech is really expanded too and I feel like. I have learned a lot through a few good books about the strengths of his particular diagnosis and functional level. So I have a new perspective on everything that doesn’t feel quite so negative. I am feeling daunted already about applying to kindergarten next year but trying to also take it one day at a time. I realized how nice it was to have the EI providers at home so I could reinforce what they were working on but I try to communicate with his providers at school and am trying hard to keep him engaged as much as possible when I am home with him after work. He loves music and singing so we are using a lot of songs to facilitate communication especially when he is frustrated or stuck on something. Also we are getting much closer to being toilet trained which is a big concerns of mine for him to be in a gen ed kindergarten program.
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We finally saw the pediatric neurologist yesterday... I think we made the appointment 4 months ago! It went really well. Our speech therapist was setting us up to her saying she wouldn't make any kind of diagnosis now, but might want to see us again... But, she didn't think he was on the spectrum, and didn't recommend a follow-up. She did think he could see a pediatric neuro-psych to get a speech delay diagnosis or see if there was something else to qualify him for services privately when he ages out of EI this October... so, we'll see.... The funny thing is, as we had our long meeting with her and were talking all about our younger son, we realized more things could apply to our OLDER son... he's going into K this fall... I had him tested through the school last year and he was totally on track, but we're thinking of doing some private testing for him this summer, I'm not sure what's going on, but perhaps an attention issue? SO, now we're sort of moving on to him.
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We've aged out of EI. Right now, we're bridging speech, PT, and OT with private services. After an intense two visit evaluation, my kiddo got placed into a half day preschool program at the special needs school in the district. He'll do half day mornings at the preschool and will do aftercare at the daycare.
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@cascademom: That seems good, right? Does the half day preschool cancel out any of the private services? Or doing both?? My son is supposed to get tested through the school for the preschool program, but our speech therapist contacted them over a month ago, and i'm just not sure when I'll hear... but we were hoping he might get into the school and they'll do a lot of the services there, then they said they could bus to daycare if we go that route.... we're trying to decide between daycare and half day preschool and a part time nanny (since our nanny is moving).
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@hellobeeboston: Not necessarily cancel out the private services. We're doing private over the summer and holidays to bridge the school district services.
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@cascademom: ahh, that makes sense
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@hellobeeboston: I hope you don't mind my asking, but what made you seek out a pediatric neurologist? Was it just for the speech delay?
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Sort of a random question: how did you ASD mamas know to evaluate for ASD? We went to the ped dentist and she asked if he's been evaluated because of his speech delay (though he is improving by leaps and bounds!) And because of lack of eye contact and because he seemed more interested in the toy in his lap than talking to her. Ummm...you are a scary grown up trying to stick stuff in his mouth and he isn't even 3 yet!
I have done so many informal assessments at home and both my husband and I are educators and I just don't see it. If he is on the ASD, then that's totally fine, but I don't see it. I mean, he makes great eye contact with us, can read facial expressions, does imaginative play, does joint attention.... he's just not a super bubbly personality. We are going to have him evaluated through the school district this fall. I really really hope this post comes off as insensitive, it's just not the first time someone has hinted at ASD when it just seems like he doesn't *like* them and it leaves me baffled and questioning my mom intuition.Eta: I should add that I have asked his SLP many times if she sees anything else concerning and she says no and she would tell me if she did. It's just the peanut gallery comments (dentist and dcp) that have me 🤷
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@crazydoglady: your story sounds veeery similar to ours.
To answer your question our first SLP seemed very convinced he was on the spectrum and she is the one who recommended the pediatric neurologist to find out if he actually was. We had since stopped working with her because I felt she was a bit of an over-reactor and didn’t feel it was working, our son also didn’t seem to like her and would ignore her, which only gave her more reasons to think that’s how he always behaved.... we kept the appointment to get a diagnosis, or at least her professional opinion.
Our red flags for him besides speech (although he’s come SO far) were eye contact, sometimes not responding to his name, although that’s mostly stopped, and his sometimes intense concentration on what he’s doing. I was really on the fence about him being on the spectrum as well, a lot of it had to do with the vast improvements he was making in so many areas, but wanted to follow through to make sure we were offering him the right services after we age out of EI. Hope that helps.
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@hellobeeboston: It does help! Thank you so much! Our sons sound like two peas in a pod. DS also has that hyper focus sometimes, lack of eye contact, and doesn't respond to his name. He also walks on his tip toes sometimes but it seems to mostly be when he's looking for something to get into/being playful. He were working with an infant specialist for a bit who said he is not on the spectrum, but just really stubborn and not really "into people" he doesn't like. He really had to be won over by people and then he LOVES them. We also had an SLP say the same thing as yours and I basically had to tell her he didn't like her. She was way too pushy and he doesn't like that. The one we have now he LOVES and wants to sit on her lap, hug her and all that. . It's so hard when you have "experts" who are telling you conflicting things, but it's good to have it on the radar.
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@crazydoglady: my son got a provisional diagnosis of asd from the early intervention psychologist. She recommended he be re-evaluated in 6-12 months because he does have many skills. Actually the person who came to our house initially from EI flat out told me “he doesn’t have autism because he can do xyz”. Which of course was the wrong thing to say. Every child on the spectrum is different and obviously there is no blood tests that can give a definitive answer. There are “gold standard” measures such as the ADOS which a psychologist with training can utilize. We have been on the waiting list to get a full evaluation for a few months so it will happen soon. Some of his “red flags” were not consistently responding to his name, reversing pronouns (says you for I), W sitting, and some sensory seeking stuff (loves to jump, bounce, run back and forth) and some visual issues like blinking repeatedly and moving toys close to his eyes. A lot of these behaviors come and go but after months of questioning I’ve come to acceptance. It’s hard because a lot of our friends and family don’t get it and don’t really see it, but all the therapists who have worked with him do. I’ve read alot and actually began to see a lot of the strengths and contributions that autistic people have made to society. It’s only one part of who my son is and is going to be, and for us the diagnosis is going to help him access supports to help him. I’m also lucky to live in a city where there are tons of free programs and access to resources.
Sorry for the novel but I hope this helps!
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@magnolia: Thank you so much for your response and insights! I agree that there is so much variability (with all children) that it's having hard and fast rules doesn't make sense. Since my son has aged out of EI, where would I even go for an assessment? If my son is autistic, then I will absolutely accept it, it's just hard to know when it keeps going back and forth between these experts.
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@crazydoglady: I hear you. Everybody has an opinion . It sounds like a developmental pediatrician could be the most helpful for you - either way they could provide insight into his development. Most major hospitals where I live have a developmental pediatric department. Otherwise a neuropsychologist could make the diagnosis (but where I live they often don't accept insurance
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Hey everyone, I know it’s been a longtime. I actually haven’t been in this forum for close to a year, but for some reason today I was really thinking about HB
I really miss being a part of this community sometimes, but life has moved us in a different direction. Ds is doing good and we’ll be starting ABA theraphy next month after a year of ECI services. Hope you all and your lo’s are doing well!
DS is now 2.5 and we started (thank the Lord, this was hard to secure also) weekly speech therapy. They tested him and said that he is at a 1% receptive and 3% expressive. So, basically, 97-99% of kids his age are more advanced. They did say that this likely a low estimate because he seemed to be refusing to speak which is his personality. He's very stubborn. I just feel...ugh...like how can we ever get past being 99% behind? I feel defeated.
. Well we did go private and DS has been in speech for almost 3 months now. I don't know percent wise where they placed him, just that at 2yrs old he's at the 9 month old level. He's also currently still not verbal. He seems to be starting to understand slightly more and he'll answer to his name about 50 percent of the time now, where before it was zero. He seems to be making progress, it's just very slowwwwww lol.
And the good news is getting these interventions early will totally catch him up in the long term.
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