https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Tue, 26 May 2026 13:33:18 +0000 https://boards.hellobee.com/topic/sox5-12p12-deletion#post-2910991 Sat, 29 Feb 2020 07:59:43 +0000 Ms.Mermaid 2910991@https://boards.hellobee.com/ <p>We got our whole exome results back and our daughter (16 months old) has a deletion of 12p12.1p11.22. She's missing KRAS, SOX5, and PTHLH. The named syndrome for a SOX5 deletion is Lamb-Shaffer Syndrome. Our neurodevelopmental pediatrician doesn't think anything about her therapies should change right now (weekly PT/OT/ST) , but I think she might benefit from more speech therapy. </p> <p>We pursued exome sequencing due to her acquired microcephaly and some concerning eye behavior we thought was seizures, as well as gross motor and speech delays. Her head ultrasound, EEG, and MRI were all unremarkable. </p> <p>Just posting in case this is helpful to anyone else who is dealing with similar issues. </p> https://boards.hellobee.com/topic/my-son-was-diagnosed-with-two-disorders#post-2899390 Sat, 12 Oct 2019 08:34:11 +0000 cyoung 2899390@https://boards.hellobee.com/ <p>Well my son (we’ll call him M) has been diagnosed with two disorders. We saw a speech pathologist that we are seeing as extra speech for my son. We pay for it through insurance. She had to do an evaluation to send to insurance and we got the results yesterday. We haven’t talked with her about them yet but I imagine next appointment we will.<br /> The first disorder is called “mixed respective and expressive language disorder” and the second is “social pragmatic communication disorder” </p> <p>It’s a lot to take in but I’m glad we are getting somewhere with answers. I always knew my son had more then just a speech delay. I’m happy we can finally get services. Idk what that may all include but we will see. </p> <p>Anyone else here if these disorders? </p> https://boards.hellobee.com/topic/autsim-evaluation#post-2896821 Fri, 13 Sep 2019 07:45:04 +0000 cyoung 2896821@https://boards.hellobee.com/ <p>So my son is almost 3. We still are waiting on our evaluation. My doctor did send a referral to another place because the other is taking so dang long! I was just wondering if any of mommas have a child with autism or is on the spectrum. My husband and I (as well as his speech therapy teachers and his doctor) are pretty sure he will fall somewhere on the spectrum. I'm kinda at a loss in some areas with my son. He is so sweet but we struggle with a lot of things. My son struggling with transitioning to different tasks especially if he really wants to continue. He struggles with it at school. I guess I'm just looking for tips to resources and things I can do till we get evaluated. </p> https://boards.hellobee.com/topic/speech-delay-and-possible-autism-tips#post-2895899 Sat, 31 Aug 2019 07:23:42 +0000 cyoung 2895899@https://boards.hellobee.com/ <p>My son is almost 3 and still is struggling with languge and speech. It's hard cause his speech teacher gives us suggestions to help him. However my son seems to do things when he wants to do them. It's hard to get him to say words or getting him to mimic sounds when some times he won't look at me when I call his name. He shows a lot of signs having autism. We are waiting to get him tested for autism but our state in the US takes forever to get kids seen. Ive been waiting for months and months. I feel defeated and like we are wasting precious time. Do any of you ladies have any suggestions or recommendations?. I'm lost here. His following direction skills are not good at all and he is really into routine. We struggle with communication. Every speech lesson I leave feeling I'm failing my son and it breaks my heart. I'm talking to his doctor about getting another referral to a different testing place at his next appointment which is in a month or less. </p> https://boards.hellobee.com/topic/feeding-therapy-evaluationwhat-to-expect#post-2870531 Tue, 05 Feb 2019 15:56:51 +0000 jhd 2870531@https://boards.hellobee.com/ <p>Anyone done a feeding therapy evaluation? We have one scheduled for tomorrow for my almost 5yo. Just wondering what others’ experiences have been. I only got to speak to someone in scheduling so I have no idea what to expect. </p> https://boards.hellobee.com/topic/help-with-2-year-olds-communication#post-2864089 Sun, 30 Dec 2018 07:23:45 +0000 cyoung 2864089@https://boards.hellobee.com/ <p>Hey just for some background my son is 26 months. He definitely has a speech delay and even with our speech therapy since 18 months old still says only about 8 words or so. I've just noticed lately he has become super frustrated when he is trying to tell us stuff. He is trying to communicate cause he will clap to get my attention and stuff when he is frustrated. What are some more things I can do to help with communication. We are trying sign language but it's like it doesnt click with him sometimes. My son is VERY smart but in some way developmentally mentally is behind. He already pees in the potty when I take him and knows a lot of other things. He gets so mad when he doesnt get his way and will scream and sometimes throw himself on the floor. He does it in public and people always side eye me. He looks like he is 4 cause he is so tall. Most people dont know he is 2.<br /> Also we are testing him for autism this year. His pedestrian believes he will fall on the spectrum. </p> <p>Any tips would he great. It just makes me sad he isnt able to communicate the way he wants to. I can tell he is not satisfied. </p> https://boards.hellobee.com/topic/stepmom-to-special-needs-lo#post-2859597 Sun, 02 Dec 2018 04:51:27 +0000 Boy_mommy 2859597@https://boards.hellobee.com/ <p>Just looking for a little bit of insight on how to handle something. For starters a little background info....the only full blood brother I had(have) was special needs and he passed away at 11mo, I was 3. The only memory I have of him is his funeral(and even that I had to seek clarification from my mother of if what I was dreaming/remembering actually happened or was it just a dream). Because of this any kiddo with special needs really pulls at my heartstrings, when the LO is close to me certain things are unbearable. When I was 14 my next to youngest little brother had to have an asthma treatment due to his age they used the oxygen mask because he wasn't old enough to hold the plastic tube in his mouth...I LOST MY SH**!! I could not handle it I walked out of the dr office crying while my mom had no clue what was wrong with me. Fast forward 12 years and now I am a stepmom to a little handsome guy with special needs. The first time I met him he was in the hospital with an illness that was effecting other parts of life causing seizures and the works....I was highly emotional and felt like a total jerk because I was "ready to go" after being there for only about 10 minutes. I wasn't actually ready to go I just couldn't handle seeing him hooked up to the machines and ventilator and such. Now slightly more than a year later I am still very distant when he is in the hospital but I can be in his room with him at his moms and talk to him and kiss him and such. I got brave a few months ago and asked his mommy if I could actually hold him. She obliged and it went shockingly well for all of about 5 minutes then as rude and mean as I felt I couldn't bear to hold him anymore. I want to get more involved in his care and learning the things he needs but 1. I feel like such a jacka** when I ask questions and 2. I don't want to be an inconvenience to mom because she has to bear with my emotions when trying to teach me things. Any advice on how to get past this block I have. </p> https://boards.hellobee.com/topic/swallow-test-3-is-tomorrow-need-good-vibes#post-2856523 Tue, 13 Nov 2018 23:41:58 +0000 Ms. RV 2856523@https://boards.hellobee.com/ <p>DS is a tubie due to a paralyzed vocal cord from heart surgery at 5 days old. Last ENT visit showed while his vocal cord was sluggish but moving so we are going for swallow study #3 tomorrow. I need some good vibes sent my way. I am so nervous.</p> <p> He just finished a bottle (practicing with doc's consent) with a #1 nipple and choked a little, but he was mostly asleep and I wasn't doing a very good job pulling the bottle out when he stopped sucking. He seems okay on an ultra preemie nipple so hopefully he will pass with that tomorrow. </p> <p>Sorry, I ramble when I am nervous/anxious. </p> https://boards.hellobee.com/topic/toddler-in-orthotics#post-2834896 Thu, 19 Jul 2018 08:32:35 +0000 PinkElephant 2834896@https://boards.hellobee.com/ <p>It looks like my kind-of-low-tone, very late walker (she's 21 months and does not willingly walk independently, instead preferring to push around a bar stool/high chair/walker) is going to be getting orthotics. I'm hoping to hear from other mamas with LOs wearing orthotics about your experience - I don't have any terribly specific questions, would just love any tips you can share! </p> <p>-did you feel like they helped your LO?<br /> -how long did your LO wear them (are they still in them)?<br /> -any tips on getting child used to wearing them/how to wear them?<br /> -did your child have to wear specific shoes with them? how much did you size up in shoes<br /> -any tips on a preferable style/color? It looks like the brand we'll use has tons of cute prints, but I think I'll get her a boring solid so they match better with all her clothes. I know this is so petty, but I'm a total closet mom and she has lots of nice clothing to show off :silly: - For her sake, I kind of don't want the first thing people notice about her to be her orthotics, particularly if she wears them long term - but I also want her to like them, so if a print does that, I can sacrifice outfit matching, haha.</p> <p>Thanks! </p> https://boards.hellobee.com/topic/confused-by-advice-at-nicu-follow-up-looking-for-advice-or-support#post-2819465 Mon, 30 Apr 2018 16:08:19 +0000 yellowbeach 2819465@https://boards.hellobee.com/ <p>Ok, feeling overwhelmed and just need to vent. Took our 14 mo ex 32 wker with hydrocephalus to her 12 month NICU follow-up today. She had some stunting in the development of her corpus callosum 2/2 the hydrocephalus, but otherwise structurally brain looks ok. First off, I wish someone would have told me it was a 4 hour endeavor - we missed lunch and nap time... both of us were hangry! That aside...</p> <p>We've know for months now she has some motor asymmetry and delays (only pulls up with her right side, increased tone in her BLEs) and have been working with PT biweekly for 3 months now. Everyone (me, dad, daycare teachers and her PT) all seemed to think she was making strides if not almost caught up. Today the NICU recommended more intensive PT, at least weekly. My reaction: exhaustion.</p> <p>And brand new today is an apparent receptive speech delay. This one really caught me off guard. She had maybe 10-15 words at home, including kitty cat, cup, ball, mama, dada, dog, milk, no, hi, bye... probably a few more. She only said "hi" and "uck" (instead of duck) for them and otherwise just babbled. Her teachers at daycare last week told me they felt she was ahead of the other kids on the room (ranging 12-18mo) in her speech as she used words and sign language to ask for things rather than just grunting for attention. But as of today's appointment, we are "way below" expected levels and have been recommended for weekly speech or OT. They couldn't even really tell me if they were recommending Speech vs OT. :/</p> <p>I have a theory on this whole thing, but perhaps I'm being short sighted. I think they are anchoring to her having hearing issues. Another long story, but when it came time for her NICU hearing testing follow-up, they were full and had to schedule her 2 months after the ideal age. At that point, she was babbling and phonating constantly, so they couldn't test her "soft sounds." At 12 months, we were getting sedation for a surveillance MRI anyway, so we decided to do the hearing testing while she was under. The ENT wanted us to consent to putting bilateral eustacian tubes in if there were any effusions so they could complete the test. Neither my husband or I would consent to a surgical procedure to complete a screening test for something we had no specific concerns about. Plus, this was February, and we had all had colds all winter. So, her hearing testing remains incomplete and she's labeled as having some kind of conduction loss, even though we have no concerns and she's never completed testing. We see ENT again in June when hopefully flu season will finally be over.</p> <p>So, my sense if that they might be anchoring to this "hearing loss" as a cause for receptive speech difficulty. Obviously I can't say for sure that she doesn't have any hearing loss since we haven't completed all the tests, but I've never had any concerns. I just don't know what to do with this "expert recommendation" by a team that saw her once in 6 months for 2-3 hours total, vs myself, her dad, her teachers and her Pediatrician. I contacted our EI coordinator to set up weekly speech as well as bump the PT to weekly, but I'm really frustrated and not sure what to do with all this new information. </p> [attach=7491/18/p80o1v.450x600.30728314_10101486482124777_2196707369262487397_n.jpg] https://boards.hellobee.com/topic/what-to-expect-at-a-developmental-neurologist-evaluation#post-2821365 Wed, 09 May 2018 10:14:58 +0000 PinkElephant 2821365@https://boards.hellobee.com/ <p>Has anyone’s LO ever seen a developmental neurologist? My 18 month old has a long awaited appointment coming up to see if they spot any underlying causes for her gross motor delay caused by low muscles tone. I’m just wondering what to expect! Thanks! </p> https://boards.hellobee.com/topic/hypermobility#post-2824597 Thu, 24 May 2018 12:34:45 +0000 IRunForFun 2824597@https://boards.hellobee.com/ <p>Wasn't sure what board to put this under, but has anyone's LO dealt with hypermobility, especially lower body? Last week we had an EI evaluation for our 16-month-old, largely because she isn't walking, but also based on some other stuff the pediatrician noticed with her legs/feet. The therapist said she's "slightly hypermobile" and has too much movement in her ankles/knees/hips. She's not walking because she feels unstable and is constantly having to make constant adjustments just to remain upright, so her legs fatigue quickly. (She does crawl, pull up, and cruise.) The walking is the only area where she's behind the curve and the therapist felt if DH and I worked with her over the summer, she could be walking by 18 months. If not, we re-evaluate starting services. She recommended having her wear a stability shoe, practicing standing and walking on uneven surfaces to build strength, and replacing her light plastic push toy with something heavier that doesn't move as fast. Also lots of swimming/kicking to strengthen her legs. </p> <p>She has absolutely tiny feet - infant size 2 is still slightly big on her - so I'm having a terrible time finding stability shoes in her size. Any recommendations? Any tips for other exercises or activities we can try?</p> <p>I'm bringing her to activities like story time, music class, mommy and me yoga, and we go to the playground a couple times a week. I'm going to look into some soft play places to take her. I know 16 months isn't THAT late to not be walking, but it still makes me sad when we are with a group of babies running around and she kind of sits out of the way to avoid getting trampled, and hesitates to really join in the play. She likes to crawl around the playground equipment but gets scared when kids zoom by and ends up just wanting to sit and watch. :sad: </p> https://boards.hellobee.com/topic/found-prenatal-vitamins-in-the-pantry#post-2824314 Wed, 23 May 2018 13:41:27 +0000 BrandNewMom 2824314@https://boards.hellobee.com/ <p>My 13 month old was recently diagnosed with an incredibly rare syndrome. Long story short, she has a chance at retardation, she has major physical delays, she has major speech delays, some kids with her condition never speak.<br /> Obviously, we're done having children. I thought I was okay with our decision, but I just found some prenatals in the back of our pantry. I can't believe we're done. I always imagined having three kids, and even though I'm so, so grateful for them both I'm just so, so sad.<br /> I feel spoiled, there's so many people struggling with IF and losses. I think it's not just that I'll never be pregnant or hold my own newborn again, but that I'm mourning the loss of this perfect family I had in my head. She has a college fund and she might not ever attend a "normal" school, let alone graduate. Let alone college.<br /> I was hoping someone here could either commiserate or understand. I'm fairly young and the only one of my friends with children. </p> https://boards.hellobee.com/topic/school-decision-wwyd#post-2713865 Tue, 21 Mar 2017 14:41:13 +0000 Mrs. Lion 2713865@https://boards.hellobee.com/ <p>Hi everyone! I have been kind of mia lately due to the craziness of life, but DH and I are struggling with what to do about school in the fall and I am hoping some of you might weigh in :) </p> <p>My son struggles with sensory processing and has been in and out of OT as needed since last summer. We moved him to a smaller class and all of his biggest struggles went away immediately. </p> <p>Now his class is full again, and the overstimulation has come back in full force. He is at a wonderful school and his teachers are great. He just really struggles having so many kids in the room.</p> <p>We have 3 options for next year...</p> <p>1. Leave him where he is. They know him and we love the school. Less transition. We can keep our private OT who can come to the school, but we have to pay for it (insurance helps).</p> <p>2. Pre K at the school where he will go for elementary. Class is 2 kids smaller, it costs less, and would give us access to services and an IEP sooner if he qualifies (which I have heard he probably won't because SPD isn't really a thing medically speaking).</p> <p>3. A more laid back preschool on a farm. This is more like an in-home but they also offer kindergarten. Less regulated which makes me nervous, but it would be a much better environment as far as preventing sensory overload. May delay access to services, but may eliminate the need for services if he has time to outgrow some of the sensory issues before he starts 1st grade. It would be harder to do OT. Also, the school is just mornings, so we would have to find a qualified nanny who is reliable and understands sensory issues (or is willing to learn) and can pick up and stay the rest of the day. </p> <p>Sorry for the novel! Thanks for your input :) </p> <p>Also, a picture because my little dude is getting big and I don't blog much anymore ❤️ </p> [attach=3751/17/on6k0p.600x600.IMG_0140.JPG] https://boards.hellobee.com/topic/social-security-for-a-baby#post-2753249 Wed, 28 Jun 2017 23:07:35 +0000 anonysquire 2753249@https://boards.hellobee.com/ <p>At my last baby's appt, they told me to sign him<br /> Up for social security payments. Can anyone with more knowledge about this tell me if this is a good idea or not? We have health insurance and they seem to pay for his appts? Well and someone mentioned that I shouldn't sign up for it unless I need it, because if he gets a job when older they will take it from his checks. Also I guess I'm just in denial that people label him special needs. I need help parenting!!! </p> [attach=1857/17/osajgn.600x600.image.jpeg] https://boards.hellobee.com/topic/i-really-appreciate-this-blog-post-on-looking-into-autism-in-your-child#post-1805838 Fri, 08 Aug 2014 11:37:15 +0000 MrsMccarthy 1805838@https://boards.hellobee.com/ <p>We still don't have any formal diagnosis for my son but I wish I read this last year when I was beginning to wonder about certain subtle behaviors in my son. I relate to the feeling that he meets some criteria but in so many areas he doesn't at all. I relate to the grieving period and then the period where you understand that this is who your child is and that is wonderful and special. I love how she ends it with so much hope and encouragement. I hope this helps someone who might share concerns or anyone who doesn't understand that a child can be autistic and still be funny, affectionate, chatty, intelligent, physically advanced and so many of the wonderful qualities our children have. It's a complicated and misunderstood diagnosis. I was as surprised as anyone. </p> <p><a href="http://www.whattoexpect.com/wom/family-life/so-you-re-wondering-if-your-child-might-be-autistic.aspx" rel="nofollow">http://www.whattoexpect.com/wom/family-life/so-you-re-wondering-if-your-child-might-be-autistic.aspx</a> </p> https://boards.hellobee.com/topic/exposure-to-special-needs-population#post-2615602 Thu, 29 Sep 2016 19:00:00 +0000 Boogs 2615602@https://boards.hellobee.com/ <p>Do you feel like your LO is regularly exposed to the special needs population?</p> <p>There is a large population at my LO's school, which I love. There's no better way to teach children about how we are all different, yet still the same. I can see kids learning empathy, helpfulness towards others, and to treat everyone with respect. I think it's so important to start them young. </p> https://boards.hellobee.com/topic/low-muscle-tone#post-2585179 Tue, 12 Jul 2016 22:36:41 +0000 Mrs. Sketchbook 2585179@https://boards.hellobee.com/ <p>Anyone else have a child in therapy for low muscle tone? My son was identified as having low muscle tone in May, and we just started PT last week. He is 15 months old and can't walk and is pretty small for his age. I also think he may have some speech delays although the many therapists in the room did not seem to think that he did (but they only evaluated him for an hour, you know?). Anyway I have resisted googling this and am trying to trust the therapists, but I do know it can have some crossover with ASD and also that it isn't likely to "go away," just something he'll have to manage. Just looking for experience or feedback! </p> https://boards.hellobee.com/topic/just-wanted-to-share-this-article-about-special-needs-parenting#post-2445915 Tue, 02 Feb 2016 08:39:32 +0000 bamblm 2445915@https://boards.hellobee.com/ <p>I came across this the other day and this really speaks to me about how much more emotional parenting is with a special needs child. </p> <p><a href="http://themighty.com/2015/01/5-pieces-of-advice-id-tell-my-past-self-the-day-we-got-the-diagnosis/" rel="nofollow">http://themighty.com/2015/01/5-pieces-of-advice-id-tell-my-past-self-the-day-we-got-the-diagnosis/</a></p> <p>For those who do not want to click:<br /> Growing up, I spent my summers in the woods, making paths with my father on our property. It was fun, exploring and creating trails that would always lead safely home. I had a lot of defining moments on those wooden trails, and I’ve always envisioned life as one big path where big moments and decisions determined the direction you’d go. But if you had a destination in mind, you’d eventually get there. Pre-motherhood I had my path mapped out. And oh buddy, did I know my destination. I knew where I was going, what I was doing, the kind of wife, mother and career woman I was going to be.</p> <p>Then I had my daughter. Then we got her diagnosis and that pre-motherhood path I’d mapped out so well bit the dust. Here in front of me was a whole new journey and I had no idea where the destination would be.</p> <p>I’ve been on this journey for about two years now, and sometimes I think back on what I would say if I could talk to myself the day we found out about Sotos syndrome. And outside of the “suck it up buttercup and do what needs to be done for your family” mentality I tend to go to in times of crisis, these past two years have given me a little more insight into how things are. So in the spirit of If-I-only-knew-then-what-I-know-now, I’ve compiled some advice I would’ve given myself or others who are currently at that moment.</p> <p>1. You’re going to be scared. That’s a good thing. Being scared is what’s going to bring the fight out in you, and you’re going to need that. Being scared is what’s going to turn you into a Special Needs Soldier, and Lord help whatever army gets in your way. You’re going to be scared in waiting rooms. You’re going to be downright terrified waiting for that test results phone call. You’re going to be scared, and because of that you’ll do your research. You’re going to study that diagnosis, your child, treatment options, therapies. You’ll do more background checks on doctors than the FBI does on criminals. You’re going to learn how to be firm when you’re on the phone with a doctor’s office and demand to see a specialist. You wont back down on what your child needs because you’re afraid of what can happen if you’re not fighting for their best chance. You’ll learn quickly that fear isn’t a weakness; it’s a Special Needs Soldier’s best weapon.</p> <p>2. You’re going to be angry. Don’t let it destroy you. There’s fear and there’s anger. Fear is productive. Anger is destructive. In our situation, anger is a wasted emotion. In the beginning you’re going to be pissed off that your life isn’t going to be what you imagined it to be. You’ll be fuming when someone asks, “What’s wrong with your child.” But let me fill you in on a little secret — being angry isn’t going to change anything. Being angry isn’t going to magically give you the life you thought you were going to have, and contrary to how much you might enjoy it, slapping insensitive people in the face isn’t going to force them to learn a little decency. Learn to let go and not let anger take up much of your time; you’re going to have so little time as it is, might as well fill it with something fun.</p> <p>3. You’re going to be amazed. At your child and yourself. With all that research your fear has driven you to do, you’re going to come across a long list of things your child might never do. Here is where the beauty happens. She’s going to surprise you. She may not always do things as quickly or as well as her peers, but she gets there and when she does, it’s amazing. Let the rest of the world have “typical.” This is so much more. As for yourself, you’re going to learn that you have a strength within you never knew you had. You’re going to love your little girl so much you’ll feel like your heart is going to explode, and you’ll never know pride like the kind you feel when you watch her beat the odds time and time again.</p> <p>4. Your life is going to be different. And that’s OK. It’s a blessing. You’ll arrange your work and social schedules around therapies and doctor appointments. You’ll look up diet plans based on how different nutrients affect brain growth. You’re not going to give two cents about what others think of you, and you’ll find that not measuring yourself to anyone else’s standards is incredibly freeing. Soon you’ll find that the life that you so desperately wanted pre-motherhood is nothing compared to what you have now. You will never underappreciate the value of family, good friends, health and happiness. You’ll have your priorities straight because they have to be. Then one day you’ll wake up and realize you weren’t given the raw end of the deal after all. So few people you know will get to appreciate life and the little things like your family does. You’ll be reminded with every new word spoken and milestone reached how incredibly blessed you are.</p> <p>5. Above all else, you should know your life is going to be filled with a lot of unknowns. You’re going to be faced with a lot of things you can’t control, but you’re going to be OK. Your family is going to be OK. Just breathe and keep walking this path, even if the destination’s unknown. Because you see, sometimes the best destinations can’t be found on a map, and the best paths are the ones we pave ourselves. </p> https://boards.hellobee.com/topic/do-you-think-it-would-be-okay-to-take-a-break-from-therapy#post-2371926 Sun, 29 Nov 2015 01:49:22 +0000 ChasingARainbow 2371926@https://boards.hellobee.com/ <p>Hello everyone! So I just wanted your opinion on this matter. I have an 8 year old son on the spectrum and he receives occupational and speech therapy. We've been going to the same therapy center since he was four, but decided that we wanted to change facilities. They recently changed management and made many changes that just don't fit our son's needs. On top of that all his old therapist have also left due to changes made. Anyway, the new place we want to take him to is closer to home but there is a bit of a waiting list. We are also expecting our third child. My husband thinks we should discontinue therapy at our current location the month before my due date and take three months off before going to the new place. He thinks it would be a good time to adjust as a new family of five and give us all some needed down time. It sounds great to me, but I can't help but to feel guilty like I'm somehow messing something up for my son. If you were in my shoes would you have your son take a break? Do you think it would hurt him in some way? </p> https://boards.hellobee.com/topic/lo-doesnt-want-to-participate-in-therapy-any-advice#post-2199232 Thu, 04 Jun 2015 15:01:24 +0000 jhd 2199232@https://boards.hellobee.com/ <p>LO has a weekly speech therapy appointment out of the home. Recently he has started pointing to the door and my purse and making it clear that he does not want to be there. :bummed: I'm not sure how to encourage him to feel more comfortable. Any ideas? </p> https://boards.hellobee.com/topic/signing-d-up-for-daycare#post-2187863 Sat, 23 May 2015 20:41:59 +0000 Mrs. Tiger 2187863@https://boards.hellobee.com/ <p>So K's daycare/preschool finally has a slot for D opening in July! I am both excited for him to get more social interactions and happy to be able to use my MIL more supplementally instead of relying on her to watch him whenever I need to go to work (3-4 days a week). At the same time I'm nervous about how he'll do... The youngest kids they'll take are 18m, and he''ll be 22m when he starts, and may be behind the other kids in communication skills. I've been able to tweak his schedule so the staff won't have to deal with his feeding tube at all, although I'm a little afraid even the fact of it existing will spook them into not wanting to take him. This fear was partly brought up by all the "yes" checks on this health form in the application! </p> <p>Other special needs mama's, how has daycare worked out? I looked for a nanny two different times but never found a good match, and we're happy with K at his school, I just find myself with cold feet now that he actually has a slot! </p> [attach=1630/15/notzdz.600x337.image-2810.jpg] https://boards.hellobee.com/topic/autism-limited-hb-posts#post-2108542 Sat, 14 Mar 2015 12:38:55 +0000 Mrs. Airbrush 2108542@https://boards.hellobee.com/ <p>I have been on this site for months but never signed up before. I was so excited to read about everyone's journeys and especially all the Infertility/TTC/Birth Stories that I felt I was finally somewhere I could relate with people that understood. After some time I looked up Autism as my 8 year old has it and was surprised that not many posts came up. I searched special needs and same thing, very limited posts. I felt a little bad to be honest since I love this place so much and wanted to be able to fully 100% relate. I wanted to be able to follow others that are dealing with what we are somewhat dealing with. I wanted to read about others and I wanted to know that I am not alone. I am disappointed but I understand that not many people would share this and I have other blogs for that BUT nonetheless I'm disappointed.<br /> I want others to know that Autism is not as bad as it sounds. Autism is different for every family, for every child but nonetheless it is not all bad. I still hear awful stories about Autism and I just want everyone to know that it is not all awful. There are bad moments but there are also great moments just as with any other diagnosis, just as with any other problem your child might encounter. Just like any typical human you will face the best and the worst. I focus on the best and that's what keeps me going. My son might have delays and problems but he has grown to teach me that we do no fail, we simply are given opportunities to try again. Please know that I understand, I'm in this journey without a map or a guide but in this journey no one is left behind. You're stronger than you think and you CAN DO THIS! Hugs to all the special parents, please know things get better. &lt;3 </p> https://boards.hellobee.com/topic/what-do-i-say-to-moms-who-stare-silentlygive-the-stink-eye-to-los-hearing-aids#post-2100992 Mon, 09 Mar 2015 15:24:18 +0000 spaniellove 2100992@https://boards.hellobee.com/ <p>We tried storytime at a library we hadn't been to before, and ended up leaving because a few moms but mostly one in particular kept turning around to stare at DS' hearing aids. I'm used to people looking by now and even asking, but the nasty looks were new. Geez, are they afraid it's contagious or that I might ask their kid to play? </p> <p>It'll only get worse with the external devices he has to wear with cochlear implants because most people have never seen those. What the heck am I supposed to say to these rude moms? Asking questions is totally fine, treating my kid like a person is fine, looking at us like we belong in a zoo or we might give your kid a disease is not. </p> https://boards.hellobee.com/topic/when-your-lo-asks-about-special-needs#post-2101163 Mon, 09 Mar 2015 17:46:04 +0000 jedeve 2101163@https://boards.hellobee.com/ <p>Has your LO asked you about someone else's special needs? (Piggy backing on the library thread). </p> <p>At mass yesterday, LO saw a woman in a wheelchair and started yelling, "what's that lady doing?" (To be fair, he asks that question about anyone and anything all the time.) I told him she uses a wheelchair to get around, like he used his shoes to get around. </p> <p>I was worried she heard, but I also didn't want to shush him and inadvertently teach him disabilities were bad or something. </p> <p>Has this happened to you? How did you handle it? </p> https://boards.hellobee.com/topic/ifsp-or-iep-meetings-for-special-edneeds-parents-and-teachers#post-2079782 Sat, 21 Feb 2015 14:54:05 +0000 spaniellove 2079782@https://boards.hellobee.com/ <p>Our 6 month IFSP review is coming up on Monday and I'm wondering about how they're handling this. Although I knew the meeting was coming up, we never received our formal notice of the upcoming meeting in the mail. Not the hugest deal to me but I know you're supposed to get that. </p> <p>What's more important is that we had a PT eval and I was told nothing except our service coordinator mentioned last week that the evaluator recommends services. Since she wouldn't tell me more, it seems like she plans to just show up on Monday and have me sign paperwork approving whatever they tell me to. This isn't okay with me - shouldn't they give me more information beforehand so we can go into the meeting knowing our options? And if LO is receiving other services should there have been any discussion of what will be brought up at the review in terms of his goals or change in services so it won't be a surprise? Or is that how they always do it? </p> https://boards.hellobee.com/topic/what-are-your-questions-about-feeding-tubes-or-life-with-a-feeding-tube#post-2058316 Fri, 06 Feb 2015 22:24:19 +0000 Mrs. Tiger 2058316@https://boards.hellobee.com/ <p>Next week is feeding tube awareness week! I'm putting together a blog post but wanted to crowd source to see if there are any burning questions or lingering curiosity the hive may have about D, his feeding tube, and the mysterious life I live ;)</p> <p>If any tubie parents have cropped up since I last asked, please introduce yourselves! :) </p> https://boards.hellobee.com/topic/how-do-you-refer-to-your-lo-with-special-needs#post-1971512 Thu, 04 Dec 2014 19:53:43 +0000 Mrs. Tiger 1971512@https://boards.hellobee.com/ <p>If your LO has special needs or a disability, do you have a quick way of summing it up for people?</p> <p>I got caught off guard during a work teleconference today, someone asked why I'm only in the office part time, and I said it's because my son has "medical issues." They then asked "so you have 1 child?" and I said "no, I have two, one is regular, one has issues." And that's just a terrible way to put it! If someone had described them that way I would be offended, but that's what came out of my mouth :bummed: </p> <p>Any suggestions? Saying I have a "special needs son" seems like that's all he is to me, saying I have a "son with special needs" feels too wordy although I guess it's not different. I try to default to that description in blog posts but I can't really get myself to use it IRL. I also like the nickname "tubie" for kids with feeding tubes, but almost no one knows what that means.</p> <p>Any suggestions? </p>