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@Jackiedavis87: That's a tough question to answer. I think sometimes I deal with it better than others. I had my son at 34w4d so I think I blame myself that some of his issues could be because he was born early. I've had a lot of guilt about his premature birth (even though it was spontaneous, no known reason, etc.) I think what makes me feel better is that I am being proactive now to do everything I can to help him - and telling myself that is all I can do! Worrying or guilt get me no where. I understand where you are coming from, mom guilt/anxiety/etc are real.

@bubblegum: thanks for starting this thread!

My son is in EI for physical, occupational and speech. He's 10 months old now but started at around 6 months. We were referred to EI by the NICU due to his extreme prematurity (he was a 25 weeker). Like others, we had our initial meeting with a social (case) worker before being assessed by various therapists and then starting the actual therapy. The case worker develops a plan with you to set goals or milestones for your baby to meet. So far we've been very happy with the EI services.

@eimama: Thank you for the thorough explanation, especially the part about the prenatal history and all the background questions. It makes more sense to me now. I've often wondered how my son's premature birth and long NICU stay will affect his future.

@psw27: Thats a great point you bring up about doing things now to help him, and that its really all you can do. I also dealt with alot of guilt about my sons premature birth even though my docs said it just happened and there was nothing i could have done differently.

@Jackiedavis87: I totally understand where you're coming from with the anxiety and mom guilt. I had to start seeing a therapist about it. Becoming a parent made me alot more anxious in general, just worrying about the overall health of my kids plus my son is very delayed which makes me worry more. I think every parent wants their kid to develop normally but in talking to other parents I find alot of kids have issues. Whether its delays, weight gain, health problems, allergies, etc. issues are alot more common than i realized and most times there is nothing the parent could really be doing differently. Youre doing a great job being proactive and like psw27 mentioned thats really all we can do.

@eimama: @bubblegum: oh man, I totally thought I responded to these! Sometimes I mentally respond to text, guess that happened here too. Lol. I ended up calling yesterday because I'm the worlds most impatient person lol. Turns out the case worker had been trying to get a Hold of me, but my phone is always in and out of service, and I still haven't recieved any of her messages. Anyways she didn't have his file in front of her but we just discussed his issues, and who she though (an OT) would be good to bring with her. So they're getting thier scheduale sorted and I should have an apt. Time for eval within the week! Oh and in the state of Texas it is 45 days also, so I'm wondering if that isn't federal?

Does anyone have any experience with hypertonia, thumb tucking, gross and motor delay? Concerned about CP...

I'm new to this board, and I'm so scared.

Any info would be very helpful!!

@Hgr2016: I don't have a lot of info but want to offer you some . It can feel very scary watching your LO fall behind and have no idea what's causing it.

How old is your LO? What does your ped think? Did he or she suggest next steps?

Here's our EI story: My LO had low muscle tone at four months, although she was never officially diagnosed with hypertonia. I also noticed she tucked her thumb a lot as a baby but no one ever mentioned it to me as a symptom of a bigger problem. She has outgrown it now that she's 15 months old. With regular physical therapy, she's starting to take a few steps on her own, and her therapists think she'll be caught up to her peers by fall.

Hugs to you!

@Hgr2016: Hi! I just wanted to chime in and say welcome, I don't have much experience yet, as we're still waiting for our initial evaluation for EI(may 3rd) I also wa ted to say that you've found a great community here. These are some of the most compassionate and understanding women I've ever had the pleasure of talking with. Your doing a great job and it sounds like you've done everything you can, so never blame yourself. The ladies here have assured me that EI is an amazing program, and that when started early babies make amazing progress, sometimes to the point of surpassing thier peers. I wish I had more to offer you, but like I said I'm still in the waiting phase be sure to check in with us often and let us know how your doing, feeling and how hazel is. We'll be here.

@Hgr2016: Hi! I have experience with hypertonia. My DS2 has quad CP, of the hypertonic type. He also has some internal congenital issues. His CP affects all four limbs, his eyes, and his ability to swallow/speak.

While this sounds scary, and was scary when he was first diagnosed, his neuro told us that frequent, intense therapy was his best chance at gaining as many skills as possible. We dove all in and started with OT, Speech, Feeding, PT, and a child life specialist who provided adapted toys. DS2 is about to be 2 now, and the therapies have been 100% worth it. While he currently still has trouble speaking and swallowing, he now has a working vocabulary of about 10 words that we understand, and has passed a swallow study on everything except thin liquids. I can't believe I'm saying this, too, but he's now walking and trying to climb :). We really believed that he would never climb and would need adaptive equipment to walk - so this is huge!

@bubblegum:
We are in PA as well!

@Hgr2016: no it's totally fine! This site is actually the easiest place to tell people, since more people understand. He was referred by his ped at his 15 month appt. even though I knew before then something was wrong. He was referred for fine motor skill delay and a social/cognitive delay. ( no pointing or waving) he also only has 2 real words at 16months so I'm sure there will be a speech delay also.

I don't have a child in EI, but I do teach preschool for kids 2.5-5 years and @Jackiedavis87: question about feeling guilty from a few weeks ago made me want to ask you mamas something. How do you think an early childhood professional can help parents seek out EI services in a supportive way? My center frustrates me because myself and several teachers can clearly see young children (toddlers and two year olds) who could likely benefit from EI services, but no one ever pursues it with parents. I think a) the administration tells us the child is still young and will outgrow it and b) people are scared to offend a parent and/or don't know what to say. I usually feel awful because by the time the child comes to my class, the issues haven't resolved themselves & the child has aged into an age bracket that seems harder to qualify for/more difficult to schedule services. I think insight into how to have these convos with parents would help everyone.

@eimama: I'm also in Colorado and my background is with older kids in early childhood (3-8 yrs). Could you answer some questions for me? My understanding is that from birth to age 3, children get services from local EI centers and that over age 3 they go through ChildFind and the schools. I've also heard that it's easier to qualify for services if the child is under age 3. Is that true? Does a family need to seek out their personal school district or can they use a more conviently located one (like the district near their private preschool or daycare)? Will ChildFind help locate private therapists if using the school districts program won't work for the family because of scheduling? In your professional experience, is it better to have a family who may not see a huge problem initiate the process and be told their child doesn't qualify or to wait until Kindergarten to assess? Finally, what tools could you recommend for preschool/daycare teachers to get a feel for what is in the range of developmentally appropriate? I find parents don't always trust the teachers' professional opinions or don't want to acknowledge the issues and having "paperwork" can help (also, sometimes we teachers are just "off" in our assessment and having guidelines can help!). I use the Ages & Stages questionnaires often, but they can be difficult since I don't always see everything that a parent does. Thanks for reading!

@joyfulkiwi sorry I'm long winded! But passionate about this field and holy typos! I'm on my phone...to answer your remaining questions- I think it is ALWAYS better to refer earlier!!!! Better to not qualify than to show up in kindergarten to discover delays that could have been addressed years ago! I worked on a Child Find team for several years and the WORST evaluations were the ones done in April, May, June for kiddos entering kindergarten in the fall. We would always internally cringe and cry "why????!!!" for the kiddos that would qualify for services. They would definitely get services in kinder but had they come in earlier they would have gotten services earlier too which is never a bad thing in my opinion. As for screeners or tools, the ASQ is a good one to use. The parents should be the ones to fill it out. One thing I like about it is that is has the three different levels: refer, watch, and appropriate. (Pretty sure they use different words but that's the gist!) and you can visually show parents where their child falls on the scoring page. I would make sure to also use the ASQ- social emotional, it's a separate protocol from the other domains. I've used a screener in the past called First Steps which was decent. Does your center use Teaching Strategies Gold? That can be a great tool to show current development and the colored bands in that tool can really help parents see where their child is and should be. I honestly think a lot of conversations with parents is about approach. If you have concerns share them. Tell them, "this is what we see here at school, can you tell me more about what you see at home?" Try to get as much info as possible from the parents. If you're worried about a kiddo, share it, "I'm worried about Kayden, I'm seeing that he struggles with x,y, and z here at school. We want him to be successful and provide all the support we can for him. There's a service called EI which might be able to help or at least give us a really detailed picture of his development and strengths. Would you be interested in learning more?" I hope I was able to answer your questions! Good luck, you're in a tricky position far too often!

@eimama: thank you so much! It's not long winded at all, it was all really helpful and I'm probably gonna to print it out to keep for reference at school! Thank you for the info on how it's structured. I know the "easier to qualify" is subjective, but what you described was what I was thinking (I.e. A 20 month old who has some behavioral issues could get services, but the same child who presents purely emotional/behavioral issues at age 3 might not). I agree that it's very tricky to approach parents because of backlash and, unfortunately, I think not many daycare/preschool teachers know how to approach these conversations. I've worked in public schools to teach K-2nd and got to be part of parent meetings with some truly amazing professionals. I wonder if EI specialists in our county could do a professional development about how to talk with parents? We had one at our center in the past that talked about the importance of EI, but not how to approach it. I will definitely look into all those tools as well. I've seen the Social-Emotional ASQ, but not the rest. Thank you again, I feel passionate about this too. I've had those kids in 2nd grade who are beyond struggling and it's heartbreaking. It pains me to see some kiddos who are 1, 2, or 3 and know they could be getting support to avoid those struggles. Sometimes the best we can do is advise the family on how to advocate for their child come Kindergarten so that it's not April before services begin.

@Hgr2016: He adored tummy time from a very early age. It was much, much easier for him to be on his tummy than on his back due to the nature of his swallowing problems (which we didn't fully understand until he had a swallow study after his CP diagnosis). He had limited movement, which we really didn't realize until he was close to 4 months old, when he wasn't able to grab toys/shake rattles, etc. He could be placed in a sitting position and maintain it really early, but couldn't get into the position himself. He could "flip" his body over from about 2.5 weeks old, but lost the ability right around 4 months - when babies often start to roll on purpose. His symptoms were inconsistent, which made them harder to describe to his doctor...he was frequently stiff, but not always. Sometimes he could reach for a toy in his lap - but only rarely. Socially, emotionally, and cognitively, he seemed to be developing well. He qualified for EI at 6 months for stiffness in his shoulders and hips and actually started therapy at 7 months. His diagnosis of CP was at 12 months, and his CP was considered to be moderate (currently, it is considered mild). The symptoms of CP can often improve over time if therapy is started early enough. I certainly would not have predicted that he would be where he is now, physically speaking.

@tlynne: I think all us (future)EI mamas have this same feeling, I know I do. Anytime I get DS around a child his age I almost always come home and cry a little bit because it's so hard to see sometimes. I just keep telling myself that I'm doing everything I can to make it better, if I could ever get to his eval date lol. 2 weeks to go!
Your doing the best job you can, and that's all anyone can ask for.

@Mrs. Pickle: I just did this! When the coordinator called she asked what DS was being referred for, so I just listed all the things my ped said, plus the things I had noticed. She made a decision based off what I said as to who she would be bringing with her to the eval. Other than that it was just schedualing the eval, which for me was set 4weeks later(may 3). Maybe someone else can chime in about the actual eval, since I haven't made it that far yet.

I just want to start by thanking everyone for thier support on this forum, you ladies have been so much help to me. Yesterday DS had his evaluation. I was told by the case worker that in the state of Texas you need to be behind 25 percent in some areas and 35 percent in some, it apparently depends on the actual area. So DS is 16 months and his adjusted age is 15 months, so he would need to be at a 11.5 month level to qualify for services. His scores came back between 12.5 and 14 months in every area except eating/drinking. They call it some long word, but not self feeding is essentially what it is, in that area he is a 9 month old. Now here's the kicker, the services would cost 557$ a month. They would bill the insurance first, but I still have 3000 left to meet on my deductible, and even then They would only cover 50 percent after that. the case worker told me that I could honestly probably get private care for less. What I ended up with was some good tips I could use to get DS to start feeding himself. She also told me that I had 90 days to change my mind, since I refused services. So that gives me some leeway to see if he's improving. Literally though in the past month since I made the apt. To when it actually happened he's made a ridiculous amount of progress in all areas. He's walking now, his pincher grasp is "perfect" (the therapist said) he has 5 words, knows who people are. I now feel like maybe I didn't give him enough time. I forget sometimes that he screamed bloody murder for the first 6 months of his life. So by the time other babies were starting to explore, he was just learning what the floor was, since he was literally held 24/7 for the first 6 months of his life. Time will tell if his development continues steadily, but for now I have some peace of mind, and having him evaluated was 100 percent worth that.