persimmon / 1039 posts
@hellobeeboston: @muffinsmuffins: @bubblegum: Thank you for your warm welcome!
clementine / 949 posts
@crazydoglady: so your original post just popped up and was not there earlier when I was reading through there hmmm 🤔. I think your totally doing the right thing. I'll never understand why people insist upon waiting for a child to "catch up" there is a reason therapy is so widely avalible today. Most people that give me that particular line are over 45, and truly just don't know what's avalible now that wasn't 20 years ago. I'm sorry your feeling overwhelmed but it sounds like you have everything headed in the right direction.
Ugh. I just watched a video of a two year old (same age as my son) reading and I'm sitting here thinking "my kid doesn't even say his name. "
persimmon / 1423 posts
@crazydoglady: I know sometimes you think of things and it makes the situation hard and sad and seem like you will never get anywhere. But keep the faith ️ It's one step at a time and before you know it you will see small things turn into bigger things. The differences in all children are what makes them special. And being different isn't a bad thing;)
pear / 1711 posts
@crazydoglady: aww mama! Give him time. Yes there are going to be kids his age that seem more advanced but I promise eventually he’ll get there. My DS couldn’t say his name at 2, shit he couldn’t even say mama but now at 3, he’s totally a different kid. Still not as advanced as kids his age but his my own genius and I love every bit of his genius it’ll get easier with time.
@pinkb: @bubblegum: Thanks, ladies. I really appreciate the support more than I can say.
We also have a hearing test tomorrow and will hopefully be matched up with a speech therapist who has a schedule that works for us (last one didnt.)
@crazydoglady: How did the hearing test go? Did you guys get a new speech therapist?
cantaloupe / 6816 posts
@crazydoglady: I was wondering too!
@bubblegum: @hellobeeboston: Thanks for thinking of us! Apparently, little man's hearing is just fine (except for selective toddler hearing.) Still waiting to be matched with a speech therapist, but our "general ed teacher" made an appointment with us on Monday.
@crazydoglady: oh that’s great news!! I’ll keep my fingers crossed that you guys find the perfect match!
@crazydoglady: good news! It's good to check that off the list. The selective toddler hearing is REAL over here. haha.
Today I'm actually meeting with our NEW speech therapist that our "general ed" early intervention woman recommended... So looking forward to that! Even though I thought we were doing speech therapy from the start. Weird.. but glad we're getting a 'specialist'... I think there was a waiting list for her, thats why they do the general-type person to start? Anyway, looking forward to it!
coconut / 8858 posts
@crazydoglady: I feel you. Mine's right there. We've been doing speech therapy since January. He understands everything, just can't speak it. I worry the same thing too.
coffee bean / 40 posts
Hi everyone! I'm new to this board so I'll give some background info, I'm wondering if anyone has been here too. DD is 3 months old, at her 1 month checkup her head was outside of the percentile charts, at 2 months it was inside at 97%. We went to get her a winter hat and the only size that fit was 12-24 month (Carters), so I made an appointment with our dr to talk about it. We go to a family dr rather than a ped. He didn't say where on the growth chart she was now but didn't seem concerned that there could be swelling or pressure issues. While we were there he had her do tummy time, held her in a seated position, and did a pull to sit. Then he said she has low muscle tone and is going to be submitting her info to be evaluated by EI in our county.
From reading everyone's stories it seems like she is so young to be evaluated. I'm feeling like I don't do the right things with her to build her muscle and how could I have missed this. It wasn't on my radar at all! She's my first and I've never really been around babies but I thought she was doing well with head control, especially given the fact that she has a large head. But maybe that doesn't matter? I'm so scared they're going to take her away from me.
@Hgr2016: How is your DD doing now? If you don't mind me asking, how did she respond to pull to sit when she was around 3 months?
kiwi / 570 posts
@Veggie: My first thought is perhaps your doctor isn't sure that she has low muscle tone and would like another specialist (EI) to take a look and see if they have suggestions for you. I absolutely would NOT worry about them taking your baby away, that is not what Early Intervention is for at all.
I had a friend with a baby with a large head as well and her doctor told her it may just be longer to a couple head-holding milestones because the muscle has to develop to hold more weight than smaller kids. I think your doctor's referral to Early Intervention is just his way of saying he doesn't have any experience answering your question.
If you are hesitant to get her evaluated by Early Intervention in any way, ask a pediatrician in the area if you can get a second opinion, they'll have an answer for you.
Alright mamas! Let's remind ourselves of all the hard work our LOs (and us) have been doing!! Post about something you LO was not doing before EI and is now a wiz at!! I know for many of us there are too many to count but post your fav!!
DS was not able to say mama before he was in EI, but just the other night said "Go to bed mama. I love you. Goodnight!" It's these sentences that kill and makes me so proud of all the progress he's made!!
@bubblegum: DS2 just started in the past two weeks doing more spontaneous and consistent expressive words. When he wants Mommy or Daddy, he says "mama" right now. Last night before I left for ASL, he said "yum" or "num." He gets tons of praise and mini donuts when we hear it. This is crazy progress from where he needed so much prompting to talk.
On the developmental side, he randomly took his pants off yesterday. So, his fine motor skills are getting better too. We're going to be working on opening up caps too. It feels like a mini victory lap after almost a year of services, hard work, and WFH with little guy home with me.
@cascademom: Whoot whoot!!! Yay for your DS! That's awesome!
pear / 1514 posts
Jumping in to this thread! My son is 2 1/2 and has been receiving speech services through private therapy for the past 3 months and we are seeing some slow but steady progress. He has oral motor issues which affect his articulation. He still sounds like he babbles when he’s trying to speak but we are understanding more each week. I can understand things in context or if I know the word he is saying, but most people don’t understand him. He’s definitely behind his peers at daycare and other friends’ kids who are around his age, but he’s progressing so I try to focus on that.
I also have feeding concerns with him because he’s very picky and has always had difficulty with certain textures, but because I have a newborn and some insurance changes I’m going to wait to get him evaluated after the new year.
My son’s speech is fairly unpredictable and he can use certain sounds in some words but can’t in others. He’s been stringing more words together to try to speak in sentences. Yesterday I said something to him and clear as day he responded “yea I know”. I whipped my head to my husband and said “did you hear that?!?” He kept saying it all night in response to things I said to him. It was a nice little reminder that he’s making progress.
wonderful persimmon / 25826 posts
@Boopers: Did you get him diagnosed for a tongue tie?
My son was in speech for years with the same kind of issues and also food, and it turned out that no amount of therapy was going to make the difference, so we went the surgical route.
@looch: I’ve actually been meaning to wall you with questions I have about your son’s therapy.
We had his tongue tie clipped with scissors at one month old. We struggled to nurse for the first three months and then once his mouth got bigger things got easier. He had a difficult time starting solids. He would gag on mashed bananas, spit food out, etc. When he was 9 months old I had a SLP friend do a feeding with him and she didn’t have any concerns. She said he had good tongue lateralization and his jaw was moving correctly, but he still didn’t really want to eat more than a purée until he was a year.
His pedi was concerned at his appointment a few weeks ago because he dropped from the 70ish percentile in weight to the 40ish percentile. She said some of that can be common with toddlers who are really active, but because I’ve been mentioning him being a picky eater for the past few appointments she mentioned a feeding eval which I unfortunately am going to have to put off for a few months.
How did you get to the point that you realized he would need his tongue tie revised? How old was he when you got it? What was your therapy journey with the services he received? Sorry for the 20 questions
@Boopers: I will write tonight with the full details.
@looch: thank you so much!
@Boopers: So here's the long version of the situation:
My son was never able to latch. The hospital where he was born (abroad) never checked for a tongue tie and I didn't know to ask. I just assumed (wrongly) that the issue was I couldn't produce any milk. So, we went to formula.
When it was time to introduce solids, my son took to purees quite well. He ate a ton of variety and was even beginning to eat more complex things, such as things with mixed textures. He ate bananas and apples, but one morning, he started refusing his usual breakfast of scrambled eggs. And very slowly, over the course of months, he began eliminating food that he had previously eaten. Not knowing any better, I just continued to give him certain tried and true foods in an effort to ensure that he grew.
Before I knew it, I had entered problem eating territory with him. We can't go anywhere unless it's not at a meal time, or I bring food. I have had limited success with restaurants, but again, it's only with familiar food.
So, we started speech therapy, because he was also having issues making certain sounds. After 3 years of speech therapy, I did a short survey for the SLP regarding certain categories of foods. You want something like 10 foods in each category (juice, puree, soft, chewy, crunchy, complex) and my son had maybe 2 in each category. One big thing is that he doesn't mix textures, that's a pretty big flag at his age (5 at the time). I decided it was time to have a feeding evaluation because I couldn't even introduce the idea of a new food without a meltdown. My son will eat a banana mashed into oatmeal, but he won't even consider putting a whole banana near his face.
So off we go, to a woman with 35 years of experience in the field and within minutes, she informs me that the issue is that he has a tongue tie that prohibits him from moving his tongue to his molars. When you bite food, your tongue sweeps it to the molars so you can chew it. My son was biting and chewing in the front of his mouth. When that happens, you don't process the food enough, and you end up swallowing food before it is chewed, getting stuck in the the throat. That's when I had my a-ha moment that this must have been what happened when he was younger.
So, we had a very short procedure to cut the sides of the tongue to restore the movement. It was done by an ENT and was under full sedation in a surgical center. It's the same place that removes tonsils and adenoids, so I felt perfectly ok with 7 minutes of general anesthesia administered via a gas mask under the supervision of an anesthesiologist.
Post surgery, we did 4 weeks of rehabilitative exercises at home and then we were cleared. Now, we need to begin the full feeding therapy, not for the motor issues, but to get him comfortable with new foods and using his range of motion.
I just wish I would have done it sooner!
I just wanted to update that we got our autism diagnosis yesterday by a neurologist. This Wednesday we start private speech and OT, which I plan to do until DS hits three. I've contacted the school district we're in and they seem to have a pretty good preschool program in place, my plan is to get him into that, but it doesn't start until 3. Anyways we have a plan and are moving forward
@arosebyany: I'm glad you guys were able to get your diagnosis and hopefully that gave you all some peace of mind.
YALL! DS annual meeting is next month, almost 7 months into being in pre-school! I'm so anxious to hear about his progress from everyone. Since he's been getting EI at pre-school we don't hear as much from the therapists as we did when he was at home of course. I have seen such a change in him, it honestly makes me want to cry every time I think about it. He's worked his booty off and it shows!! I couldn't be more proud of him even if I tried. I'm so excited to hear everything his teacher and therapists have to say!
@arosebyany: I'm so glad you finally able to get a diagnosis for your son so you can move forward with your plan. I admire your determination-- your son is very lucky to have you!
@bubblegum: That's great! Let us know how it goes!
AFM, I am a getting frustrated because it's been over a month since we signed our FEP (family education plan) and we still haven't been paired with a speech therapist because of scheduling conflicts. We also get services from an infant development specialist (and she's been coming once a week to "make up" for the fact that we haven't been paired with a speech therapist) but it's not the same thing as speech therapy. I called our case worker again to be like what the heck is going on here?
@crazydoglady: Will do!!
Holy crap a whole month!? What's up with the scheduling issue? If it on their end or yours? That's insane. I know we went MONTHS without speech therapy and it drove me batty because that's what he truly needed. My fingers are crossed that you get some type of answer TODAY and that you guys are able to start speech asap!!
@bubblegum: It's a bit of both. We were initially paired with a speech therapist who couldn't work past 3 and wanted to have the sessions while he was at daycare. Our daycare doesn't want that so I asked for them to be after and apparently there is NO ONE with that availability. Geez, it's not like I am asking for 9pm but 3! When I called the caseworker, I basically said it's been neatly 45 days (by law services have to begin before 45 days.)
@arosebyany: so glad to hear you have a diagnosis already and are moving forward ️
@crazydoglady: Oh I totally understand!! This was our struggle too in the beginning!! My fingers are crossed that you guys find the perfect match soon and get the ball rolling!
@bubblegum: @pinkb: @crazydoglady: thank you everyone for the well wishes! I know nothing will ever replace you all who have helped me so much on this journey, but I did find an autism community online that I really like and they've been so positive that I'm feeling extremely optimistic. They've also been instrumental in guiding me though insurance issues and how to get services through my school distric when DS turns 3! So I just want to say again thank you! You all really are the best community any mom could ask for! Ok I'm done with the sappy now
@crazydoglady: one month is crazy!!! I would be calling daily or demanding somebody's superiorvisor, but I'm crazy impatient so take that with a grain of salt! Did they give you any sort of time line in the begining?
@bubblegum: I am so excited for you for next month!!! I remember when DS started eating with his hands (he was 21 months) I was so estatic that I sent the video I took to EVERYBODY lol. I thought my heart was going to burst out of my chest from all the emotions lol, hell I cried!! But the truth is that was a huge milestone for us!
clementine / 800 posts
@arosebyany: it sounds like you have a great plan going forward! We are currently in the process of getting the preschool eval going. In my state it can start before they turn three so everything is in place by the time his birthday comes. I’m wishing all the best for your little guy.
@arosebyany: Every milestone is worth celebration! Please check in with us as well! I still want to hear the progress of your LO!
@looch: Sorry it took so long for me to reply! Thanks for sharing all that information. What a long road you and your son have been on. He's lucky to have you as a mom! Is there a plan to continue speech therapy in addition to the feeding therapy or do you see an improvement with his speech post revision? Does his therapist not think he has oral motor issues anymore?
grapefruit / 4988 posts
Hi ladies. I joined this thread forever ago and then disappeared because it took so long to get the ball rolling with EI. My DS ended up qualifying based on his eating issues and we just had our very first EI session last night. It was...uneventful. Our therapist (is that the right term?) warned us that it was going to be very slow and take a very long time. I can't help but feel dejected that after all this work getting EI to happen, we are going to move at a snail's pace. Not sure what I am looking for here, just wondering how you guys deal with these emotions. My little guy hasn't progressed at all in over 4 months and I just feel so sad watching him fall further and further behind.
honeydew / 7580 posts
@catlady: my son aged out of EI in the spring but I occasionally drop in on this thread. I’m sorry you’re feeling frustrated. I know how much waiting and work it is to get services and then to hear it will be a slow process has to be so disheartening. I would totally be frustrated and upset if someone said that to me on a first visit!! Hang in there, mama!
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