https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Sat, 09 May 2026 22:33:14 +0000 https://boards.hellobee.com/topic/sox5-12p12-deletion#post-2911010 Sat, 29 Feb 2020 14:18:26 +0000 MoonMoon 2911010@https://boards.hellobee.com/ <p>Thank you for sharing! I was unfamiliar with the syndrome so your post gave me a chance to look it up. Do you feel that therapy will be helpful for your daughter? What therapies is she receiving? Does the diagnosis help you guys answer some questions or put some pieces of the puzzle together or is it more incidental to what you've already been doing for and with your daughter?</p> <p>Finally how's your girl doing? I wish your whole family the best :heart: </p> 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/help-with-2-year-olds-communication#post-2864142 Sun, 30 Dec 2018 18:59:57 +0000 Mrs. Lemon-Lime 2864142@https://boards.hellobee.com/ <p>When LO’s inunciation makes it difficult to understand I let him know calmly that I can’t understand and then I invite him to show me what he wants or is talking about. Letting me show me has saved LO from growing frustrated to the point of tears. Then, I say the word(s) and have LO try to repeat them after me. </p> https://boards.hellobee.com/topic/help-with-2-year-olds-communication#post-2864133 Sun, 30 Dec 2018 16:09:23 +0000 muffinsmuffins 2864133@https://boards.hellobee.com/ <p>DS is 4 and has suspected apraxia/motor speech disorder so I second the motor stuff mentioned above as well as OT/PT assessment and evaluation. Communication boards and pictures helped us as well as sign language. He has been in private and public speech since 18 months and the home activities are so crucial when they’re young as they don’t cooperate during the sessions and it needs to be repeated for consistency. We have done several Hanan speech programs which you can look up online, borrow or buy the textbooks. I believe there is one specifically for those on the spectrum. The program focused a lot of parent teaching sessions and then we would practice at home with him. It’s much easier now he’s 4 and he’s made leaps and bounds. Age 2-2.5 was very hard for us with the tantrums so some of your issues could be normal development. We worked a lot on pointing at things or taking our hand to show us, holding up 2 objects for him to choose and creating our own hand gestures that worked.</p> <p>Also get his hearing tested just as a precaution. DS’s ENT waffled on doing tubes after 4 abnormal hearing tests but we had a massive explosion after he finally got them done. You would NEVER think he couldn’t hear properly. He always responded and seemed to hear us but the amount of fluid constantly in his ears was crazy when they did the surgery. Basically he heard like he had water in both ears for 2.5 yrs.</p> <p>Also I wanted to say that it’s so so hard to watch them try to communicate and they can’t. Reading your post brings back a lot of emotional memories as we navigated through the system. We had lots of time where it seemed there wasn’t any progress and then we would have a breakthrough. I really hope that happens for you and just know that you’re doing your best to be your child’s advocate. </p> https://boards.hellobee.com/topic/help-with-2-year-olds-communication#post-2864108 Sun, 30 Dec 2018 11:03:32 +0000 cyoung 2864108@https://boards.hellobee.com/ <p>@magnolia: thank you so much! We bought some pecs cards but I haven't used them yet. His speech teacher said she could help me get started and what to do. I'll have to check out house books for sure. That routine chart could really help too. We have a routine but its not super strict but maybe I need to step up in that area. He does go to a moms day out for social interaction twice a week so I've been told that that helps a lot. </p> <p>@looch: not too many actitvies really. She is super sweet and we love her. My son loves when she comes over but she is like 25 weeks pregnant and I think she is getting tired and not fully being here mentally sometimes. I understand how she feels so I don't get too upset. She did start bumping up our sessions to two times a month.</p> <p> @Baby Boy Mom: I will look into that. :) </p> https://boards.hellobee.com/topic/help-with-2-year-olds-communication#post-2864107 Sun, 30 Dec 2018 10:49:23 +0000 magnolia 2864107@https://boards.hellobee.com/ <p>Also some tools for communication that have been suggested to me is using visuals to go with words - PECS (picture exchange communication system). The child points to a picture or gives another person a card with the picture on it - see attached example</p> <p>I also use a visual magnet schedule for my son so he knows what to expect. It’s called “easy daisies” and has pictures to go with the words. </p> [attach=4966/18/pkk3yb.450x600.image.jpg] [attach=4966/18/pkk3yc.450x600.image.jpg] [attach=4966/18/pkk3ye.450x600.image.jpg] https://boards.hellobee.com/topic/help-with-2-year-olds-communication#post-2864101 Sun, 30 Dec 2018 10:03:04 +0000 magnolia 2864101@https://boards.hellobee.com/ <p>@cyoung: I wrote a whole response and then it didn’t post. Just wanted to say how amazing it is that you had him in speech therapy. Early intervention makes all the difference. You’re doing a great job mama! </p> <p>My 4 year old was evaluated for services at 2.5 and was given a preliminary autism diagnosis, the diagnosis was confirmed last summer. He is level 1 which means high functioning more or less..... it was really hard at first. But he has made huge growth since then. He currently gets speech 3x a week as well as occupational therapy 2x a week in school. We also have him once a week in private speech/play therapy and 6 hours of ABA. My son is also very smart and has a higher than average IQ. He just learns differently and has a lot of difficulty with social interactions. </p> <p>Some of your son’s behavior sounds like it could be developmentally appropriate. (Tantrums) ABA really helped us with his behavior though. </p> <p>If you are interested in books I would recommended Uniquely Human by Barry Prizant and Neurotribes by Steven Silberman. I also just read How to talk So Little Kids Will Listen and it’s great. It has a few chapters specifically on speech delayed kiddos</p> <p>Hugs and feel free to reach out with anything. As you move forward :heart: </p> https://boards.hellobee.com/topic/help-with-2-year-olds-communication#post-2864100 Sun, 30 Dec 2018 09:43:43 +0000 Pollywog 2864100@https://boards.hellobee.com/ <p>I hate to agree that it sounds like the spectrum. Ifit is, I agree with @Baby Boy Mom that dietary changes make a huge difference. A few things that helped my boss's daughter who's autistic and nonverbal is having a board of common requests that she can point to what she wants. That really helps. Also lots of routines really help. Deviation from the routine causes major meltdowns </p> https://boards.hellobee.com/topic/help-with-2-year-olds-communication#post-2864093 Sun, 30 Dec 2018 09:12:43 +0000 Baby Boy Mom 2864093@https://boards.hellobee.com/ <p>So this is not directly about speech, but if you think your lo will be diagnosed on the spectrum I would implement some dietary changes asap. At the minimum gluten free/casein free, but ideally specific carbohydrate diet or gaps diet. Check them out and feel free to msg me questions. :heart: </p> https://boards.hellobee.com/topic/help-with-2-year-olds-communication#post-2864091 Sun, 30 Dec 2018 08:32:28 +0000 looch 2864091@https://boards.hellobee.com/ <p>Is your speech therapist giving you activities to do at home?</p> <p>My son really needed motor assistance, so we have a ton of tools, like bite sticks, a z-vibe tool and some other stuff for stimulation because he didn’t have strong sensations around his mouth. </p> https://boards.hellobee.com/topic/help-with-2-year-olds-communication#post-2864090 Sun, 30 Dec 2018 08:18:58 +0000 JennyPenny 2864090@https://boards.hellobee.com/ <p>My 20 month old is delayed but his ped thinks it’s too early for services. I’ve been listening to the Teach Me to Talk podcast and the tips have definitely been helping. <a href="http://teachmetotalk.com/category/podcast/" rel="nofollow">http://teachmetotalk.com/category/podcast/</a> Her recent “I need a plan” series was especially helpful for us to figure which areas to focus on first, though I’m sure your therapist could share that with you too. She also sells a lot of materials which I would expect to be high quality, but I haven’t used them personally. </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-2859823 Mon, 03 Dec 2018 15:51:45 +0000 snowjewelz 2859823@https://boards.hellobee.com/ <p>I think in her case it's a little more than just fears and being uncomfortable; it's probably trauma from her little brother that was never probably processed/dealt with. </p> <p>I agree with above advice to A) seek our a therapist to get healing and freedom from your past trauma B) ask his mom how you can tangibly help, in and out of the hospital C) I think if you do set your mind to seeing him in the hospital, holding him, etc, then you need to spend some time pep talking yourself that no matter what you have to be able to put him first in those 10-15 or however long </p> https://boards.hellobee.com/topic/stepmom-to-special-needs-lo#post-2859679 Sun, 02 Dec 2018 20:18:32 +0000 Ms. RV 2859679@https://boards.hellobee.com/ <p>As a mom of a special needs LO, I can tell you that it is full of doing stuff you aren't comfortable with but you just have to persevere through it. It sucks. But you get used to it. You just have to dive in. You'll get over your fears. </p> https://boards.hellobee.com/topic/stepmom-to-special-needs-lo#post-2859638 Sun, 02 Dec 2018 11:42:03 +0000 PinkElephant 2859638@https://boards.hellobee.com/ <p>Are you comfortable enough with his mom to share about the loss of your brother and explain why you are feeling what you're feeling?</p> <p>It's not being a jackass to ask questions about the child's care - you genuinely don't know, and as his stepmom you'd want to be able to help. In his mom's shoes, I'd appreciate your willingness to learn. You can always frame your question with - "I'm sorry, I feel rude/mean/bad having to ask this, but....how does the feeding tube work/how do I do 'x'/what do I do when 'y' happens".." I am sure as his mom she's had to overcome all sorts of difficult emotions about his conditions, and can on some level understand understand how you feel terrible seeing him in discomfort. However, I guess you also have to understand that she may feel resentful that you have these emotions if she thinks you aren't "entitled" to them since he isn't biologically "yours" (although I certainly hope that she is glad he has a stepmom who cares to become involved!)</p> <p>I agree with others that perhaps seeing a therapist to talk about your childhood experience, along with being open with his mom, will help. Can you find out more about his long term prognosis? Is it likely he will soon pass away from his conditions, or are they manageable? I think it's important for you to understand the reality of his situation and how it (most likely) differs from your little brother's. </p> https://boards.hellobee.com/topic/stepmom-to-special-needs-lo#post-2859621 Sun, 02 Dec 2018 09:40:56 +0000 crazydoglady 2859621@https://boards.hellobee.com/ <p>@nana87: Took the words out of my mouth. </p> <p>@Boy_mommy: I honestly think you need to get past yourself in this because it really isn't about you...its about a little boy who needs the grown ups in his life to be focused on him. </p> <p>The last part of your post spoke volumes to me-- you are more worried about your personal comfort and how you are perceived than you are about learning to care for this boy. You really, truly need to take yourself out of the equation. I think therapy would be a good to start to manage your impulses. </p> https://boards.hellobee.com/topic/stepmom-to-special-needs-lo#post-2859607 Sun, 02 Dec 2018 08:01:31 +0000 Mrs. Snowflake 2859607@https://boards.hellobee.com/ <p>Counseling with a compassionate therapist would likely be extremely helpful. You need a safe place to work through your own emotions and trauma so you can be there for your stepson and differentiate between him and your childhood trauma. </p> <p>I am sorry you are experiencing this. Trauma is si hard. </p> https://boards.hellobee.com/topic/stepmom-to-special-needs-lo#post-2859604 Sun, 02 Dec 2018 07:52:35 +0000 nana87 2859604@https://boards.hellobee.com/ <p>You need to find a way to the child’s needs before your own emotional response. From what you’ve described, you’re having a deep-seated reaction based on events you can’t even fully remember; being any kind of parent, step or birth or adopted etc, means your kid has to come first. Maybe that’s through some kind of mantra you tell yourself, like your stepson isn’t your brother, maybe it’s through breathing techniques, I don’t know. But therapy could prob help. </p> <p>It’s not really comparable but reminds me of when my husband’s father was first diagnosed with cancer, his impulse was to avoid it, and when pressed, he said he couldn’t handle it, he hated hospitals. Well, no one likes hospitals (unless they’re medical professionals!), but you have to step up and be there for your loved one anyway. No one likes seeing a kid in pain, but it’s more important to give the kid the love and care they need and project strength for them than give into ones emotional response, or at the least support their primary caregivers. You can’t make this about yourself. </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/autism-limited-hb-posts#post-2109276 Sun, 15 Mar 2015 13:37:43 +0000 Mrs. Tiger 2109276@https://boards.hellobee.com/ <p>@SuperMomma: how sweet of you! I lurked for a long time as well, I'm glad you joined. There's quite a few of us dealing with some health issues for our LOs in the chronic health support board, please feel free to join in on there as well. </p> <p>FYI, if you want people to know you've replied to them, hit the "reply" button next to their post - easier then typing out their name, and then they get an email notification! </p> https://boards.hellobee.com/topic/autism-limited-hb-posts#post-2109196 Sun, 15 Mar 2015 11:33:35 +0000 Mrs. Train 2109196@https://boards.hellobee.com/ <p>Welcome, I am so glad you posted and put your story out there. I hope you do consider writing a guest post. My oldest son (in kindergarten) is currently going through assessments to see why he is delayed. We will see where it takes us but for now we just have a lot of unanswered questions. </p> https://boards.hellobee.com/topic/autism-limited-hb-posts#post-2109188 Sun, 15 Mar 2015 11:20:59 +0000 Mrs. Pen 2109188@https://boards.hellobee.com/ <p>Hey there - welcome to HB!</p> <p>Mrs. Twine is a wonderful blogger whose daughter is on the spectrum as well and she has lovely posts. She is an incredible mother whom I've had the pleasure to meet and spend time with and I definitely recommend checking out her posts!<br /> Here is a really great one: <a href="http://www.hellobee.com/2014/12/02/equine-therapy-2/" rel="nofollow">http://www.hellobee.com/2014/12/02/equine-therapy-2/</a>, and one about her experience with a social worker: <a href="http://www.hellobee.com/2014/07/24/we-have-a-social-worker/" rel="nofollow">http://www.hellobee.com/2014/07/24/we-have-a-social-worker/</a> and she details how she approaches discipline with her children in this post: <a href="http://www.hellobee.com/2013/06/18/the-nurtured-heart-approach-disciplining-for-greatness/" rel="nofollow">http://www.hellobee.com/2013/06/18/the-nurtured-heart-approach-disciplining-for-greatness/</a></p> <p>Oh and don't forget this one - so sweet and raw honesty. <a href="http://www.hellobee.com/2013/06/07/the-dark-side-of-heritability/" rel="nofollow">http://www.hellobee.com/2013/06/07/the-dark-side-of-heritability/</a></p> <p>It's a good start and I'm sure she'd be willing to talk with you if you reach out to her! </p> https://boards.hellobee.com/topic/autism-limited-hb-posts#post-2109175 Sun, 15 Mar 2015 10:26:11 +0000 Mrs. Airbrush 2109175@https://boards.hellobee.com/ <p>You are all so amazing! I knew I loved this place and for a great reason. I appreciate all your responses and suggestions I definitely do feel welcomed. Thank you all so much, I am more in love now than I was before (if that's even possible.) You all made my day, I appreciate you all taking the time to make me feel welcomed. </p> <p>@Lawbee11: I have read the autism series which is why I looked for more. I also read all the other posts related to it but not quite what I expected, nonetheless my love for this place still remains. I appreciate you bringing it up though ;-) </p> <p>@Mrs.Tiger: I feel a little star struck that you and Mrs.High Heels replied since I recently finished reading all of your posts. Both of you are amazing and made my love for this place grow. Mrs. Tiger you are actually the reason I finally decided to sign up. I have been reading for almost a year and finally decided that I just HAD to be in here so I can reply. I read (&amp; cried) reading your post in regards to how people talk to special needs parents and I was nodding my head in agreement the whole time. I knew you were a mom that understood and knew I just had to be in here. Thank you for sharing the journey here, it makes me happy to know that others can read about you ( and your son/family) and feel that they can relate. It's amazing amazing feeling.</p> <p>THANK YOU, thank you, thank you all so much. I truly do appreciate your responses. &lt;3 </p> https://boards.hellobee.com/topic/autism-limited-hb-posts#post-2108803 Sat, 14 Mar 2015 18:09:41 +0000 Mrs Green Grass 2108803@https://boards.hellobee.com/ <p>This site is still not huge which is one of the things I really love about it. We have gone through two different experiences with pregnancy and childbirth that were the first on the site. But since my Lo was born at 25 weeks two years ago, there have been two more 25 weekers. So although I felt a little too unique for awhile, eventually I was able to share with others. I'm pretty sure there is at least one person in the special needs group whose daughter is on the spectrum. I think that would be the best place for you to start making connections. </p> https://boards.hellobee.com/topic/autism-limited-hb-posts#post-2108769 Sat, 14 Mar 2015 17:46:29 +0000 sorrycharlie 2108769@https://boards.hellobee.com/ <p>I agree that a guest post would be great! I don't have a child with autism but my sister has Asperger's and I have a cousin on the spectrum, as well as a nephew. I just don't often post about them because, well, they aren't mine ;) </p> https://boards.hellobee.com/topic/autism-limited-hb-posts#post-2108765 Sat, 14 Mar 2015 17:44:27 +0000 Mrs. High Heels 2108765@https://boards.hellobee.com/ <p>Thank you for sharing! I think it's good to hear both the pros and cons, and I'm glad you shared honestly in a constructive way! That will only help make the site better. I agree a lot of our kids are still a little too young to know for sure about an autism diagnosis but would you be willing to submit a guest post about your experience? I'd love to read more about it! </p> https://boards.hellobee.com/topic/autism-limited-hb-posts#post-2108750 Sat, 14 Mar 2015 17:12:04 +0000 erinpye 2108750@https://boards.hellobee.com/ <p>My daughter has sensory issues (mostly sensory-seeking) and some other stuff that makes her different from the norm. While she's not autistic, I can relate to seeking parents who share your experience and support you. I'd love to hear more about your son! I hope you share more here, and that we are able to offer you some support and understanding. Welcome :happy: </p> https://boards.hellobee.com/topic/autism-limited-hb-posts#post-2108746 Sat, 14 Mar 2015 17:00:19 +0000 MrsMccarthy 2108746@https://boards.hellobee.com/ <p>I walled you! :heart: </p> https://boards.hellobee.com/topic/autism-limited-hb-posts#post-2108723 Sat, 14 Mar 2015 16:20:03 +0000 Kimberlybee 2108723@https://boards.hellobee.com/ <p>The series that @lawbee11: suggested is an amazing read! You should email the guest blogger because she is such a kind soul and returns emails quickly. </p> https://boards.hellobee.com/topic/autism-limited-hb-posts#post-2108708 Sat, 14 Mar 2015 15:53:03 +0000 hotchildinthecity 2108708@https://boards.hellobee.com/ <p>Hi! I have a child with special needs but not autism. There are definitely other SN moms on here :) </p>