That Time Birth-3 Came to My House.

I’m back for my second post of the night, Part 2 of my 21 month old B’s story. In Part 1, my husband and I found out that teething can impact a toddler’s speech development, which I was totally clueless about. Unfortunately, even after solving that problem and noticing a slight improvement in B’s speech, his story doesn’t end there and we may be on the cusp of something new. As I did through infertility, a high-risk twin pregnancy, and the newborn and toddler stages, I have turned to the internet for support in areas of concern. These have been topics I don’t know enough about and in the stress of a moment, I want to soak up as much information as I can, so I can do whatever is necessary at home to try and “fix” the problem. So my purpose in sharing these stories here on this blog is in case anyone out there is scouring the corners of the internet for the same reason – to ask questions and find support.

At the recommendation of my pedi (“If you’re really concerned…” he said), I called my state’s Birth-3 program. I was a little nervous in doing so, because calling them meant I had a concern about my child, and I don’t like being concerned about my child. Nevertheless, I called them and the woman I spoke with was very kind and warm – my type of person. I explained to her that I had sought her program out because of a speech regression in my son at 19 months, which Dr. Google said was not good at all. In fact, Dr. Google told me that a speech regression that occurs between 18-20 months might be one sign of autism. The internet also told me that mothers who have autoimmune diseases while pregnant are more likely to give birth to an autistic child. We were 2 for 2. I told the woman that B did have a double ear infection and fluid in his ears, which we believed likely caused the regression, but I still had concerns about a few quirks of B’s. The woman suggested they still come out to my house and do an evaluation, to take a look at those quirks and get a full and complete picture of who B is. The evaluation was free, so I agreed.

What are B’s quirks? I’m a first time mother. I don’t know what’s normal and what’s not. I have a son and a daughter. They are completely opposite. While C nurtures baby dolls, B pushes cars. Some children are calm and easy-going and some are high-maintenance. Some don’t mind getting dirty and some want to stay clean. I just assume(d) that these were normal characteristics of toddlers. And maybe they are, I still don’t know. But B has become very sensory sensitive. He recently was reluctant to touch our shaving cream sensory bin, and doesn’t care for any stringy, crumby, or slimy textures whatsoever. In the last month or two (or is it just noticeable now that the snow is gone?), B has an aversion to touching grass. At first, he stood up using his elbows. Then his palms only, fingers up. B has an aversion to specs of dust, dirt, hair, or crumbs that don’t belong. While eating an egg sandwich, if a piece sticks out, or a crumb is in a weird place, he points to it, fussing, “eh, eh, eh” and I have to take it off for him, or at the least, say, “Wipe your hands on your bib, then.” When his new socks caused a fuzz to stick to his toes, coming off and floating in the bath water, he noticed it right away, again fussing for my husband to take it out. He is not able to problem solve on his own by removing whatever it is he doesn’t like. Where once he didn’t mind spiders and ants, he now makes a sour puss face when he’s close to one, as if they gross him out and give him the shivers. Yes, this was a concern of mine.

B has a few other quirks. He’s madly in love with the color orange. He will play, eat food, and wear other colors, but if given the choice he will seek out orange. Orange socks, orange blocks, orange animals. If we take a walk in the stroller and I say, “Can you hear that airplane, B?” (B LOVES airplanes), he says, “Orange?” I’ll confirm – “You see an orange airplane?”. “YEAH!!!”. Or our newest game, “How many kisses do you want?” “One”, B will say. “Orange”. “One orange kiss?” I’ll ask. “YEAH!!! Neen!” “One green kiss?” “YEAH!!!”. You get the idea. It’s not like he doesn’t know all the other colors or even like them – he does. But he prefers orange and he uses his knowledge of the color in weird situations. Even when he doesn’t actually see the color, he’s thinking of it.

B loves repetitive motion. Many months ago I became a little worried when he started throwing his head back on the couch for fun. He continued to do it every day, only when he was happy and content. Many times, he’d grab two orange blocks and then sit against the couch and slam his head against it. If it ever caused pain, he wouldn’t do it (as he did to the floor during a tantrum once). No, this is happy motion. He loves swings. He loves car rides. He loves jumping in his crib. He loves pushing toy cars and trucks – using his whole body back and forth to do so. Again, I see this as sensory-related.

Finally, he throws fits. Big ones, especially a few months ago but still a few times a week now. He hits, he gets mad and throws things, he whines all the time, constantly, without the words telling us what’s wrong.

So these are a few of his quirks. Birth-3 came to my house today. They did their evaluation. I was hoping they’d say, “No, B’s a normal high-maintenance toddler and there’s nothing to worry about”. That did not happen.

B qualified for Birth-3 services. I’m still wrapping my head around all of it, but from what I understand, here’s what they saw: They saw a child who did not meet the standards in a few areas, one of which was sensory-related (they definitely see the same sensory issues I do). They are concerned about the fact that he doesn’t climb for fun. That he never learned to crawl (though he can now). That he only does these things for practical reasons, like to get up the stairs. That when he meets another child other than C, he takes a look at them and then goes off on his own. He’s not overly interested in other people – he’s interested in things and how they work. Above all else, though, they’re concerned about his communication skills.

Now, I called Birth-3 because of a speech regression, but I was talking about his pronunciation. They saw an issue I wasn’t seeing. I assumed B has plenty of words. The pedi asked me at the 18 month appointment and I couldn’t count his words – it’s probably close to 50. But likely 40 of them are identification words – every letter, color, number and shape. He knows his fruits, his animals, and he can say them out loud. But none of those things are communication. How does B communicate? He whines, cries, “eh, eh”…plus a few words, such as the names of everyone in the house. Birth-3 said he could possibly be on the autism spectrum, something I absolutely dreaded to hear out of plain old fear. We can (and will) request a specific autism evaluation and if he qualifies for that, those people will come to our house every week and take over for Birth-3, as it’s a different program. Next week, we are sitting down with Birth-3 and creating an IFSP, which is the young children’s version of an IEP used in school for special education students. Yes, in a few days I’m creating an “IEP” for my baby, my under-2 little boy. We don’t know yet what exactly he is, or has, or whatever. He’s too young to tell. Even the Birth-3 people said, yes, you can have a sensory issue and not be autistic. Yes, it may just be that he hasn’t been exposed to other kids enough on a regular basis for him to care about interacting with them (true, they’re in my house alone every day during the week). And yes, there are a few things my husband and I were doing that was hindering his development, which when we stop doing those things, he might show improvement.

What are those things we’ve been doing wrong? Well, we were parenting the way we thought was best, and so that wasn’t wrong at all and actually was perfect for C. However, for B’s needs, it wasn’t the right fit. First of all, we both were talking to the twins WAY too much. We’ve always believed it’s important not to use baby talk on toddlers – to talk to them in normal tones using normal words. We speak in complete sentences to them. But for B, there are too many words being spoken to him. The Birth-3 women said it’s too much for him to process. Keep it simple – “fast ball” instead of, “B, look how fast the ball is rolling down the hill!”. Oops. Forget the “please” and “thank you” right now, they said. Just get him to say the content word of whatever he wants. Start there. And above all else – stop talking for him, they said. Oops. B says, “eh, eh, EH” – and to make him happy, to get him to stop crying/whining/screaming we say, “B, what do you want? Do you want this? Do you want that? Would you like to do this and this and this?” UGH (Yes friends – I parent the same way I teach, by talking way too much!). Up until now, all B had to say was yes or no. Pay him less attention, they said. Let him come to us, tap on our shoulder, point, whatever it is – we’re doing all the work for him. Yes, we are. To address his challenges gagging on certain foods and misjudging the size of the pieces in his mouth (an ongoing problem), we were told to start brushing his tongue, insides of cheeks and roof of his mouth so he gets used to feeling objects in those spaces. So we’ve got our homework for the next few weeks until Birth-3 starts their services doing whatever it is they’re going to do. Working on sensory, gross motor, communication, etc.

This post was lengthy and picture-less. It’s more of a vent for me, but perhaps it may help someone else out there. I’m feeling glad that we did this, that we’re getting help for B while he’s young. That I don’t have to stress about how I can “fix” his issues, that someone else is going to come and take that weight off my shoulders and tell me what to do. But I’m also still a little shell-shocked that something isn’t right with one of my children. They’re both so perfect to me that I can’t wrap my brain around something being wrong. So I’m still in denial, hoping that after services and strategies are given to us, B will meet all the standards and go back to just being high-maintenance and that’s it. We will put this behind us and tell him when he’s an adult of the time he needed a little professional help to make him even more perfect.

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28 thoughts on “That Time Birth-3 Came to My House.

  1. Lucy says:

    It must be so scary asking for help for your child. I work in a special primary school teaching maths, and ALOT of the children go on to mainstream second schools and get jobs, live “normal” lives with the coping strategies they learn, so don’t worry if he does get a diagnosis it doesn’t mean he can’t be happy and fulfilled. Being Autistic just means your child might see the world differently than other children, and need extra support to process their surroundings. Please feel free to get in touch if you want any support or ideas for behaviour management, sensory support, communication support or just to understand what he may be thinking or experiencing. My thoughts are with you. Lucy

    • futuresoccermom says:

      Thank you so much for your kind comment. I have to say – as I was writing the post I was thinking, “I hope this doesn’t come across the wrong way”. I know that children with Autism do typically go on to live a fulfilling life, and I’m very grateful that there are programs in place to help with that. I think I’m just still in the shock stage, the worry stage, that he will receive a diagnosis of Autism, and it’s really getting around the denial aspect of it right now. But I know in time, I’ll get there. I would love any suggestions you have, especially in the area of sensory or communication support. I’ll take any tips I can get!

  2. Daryl says:

    An early intervention evaluation can be a bit overwhelming, huh. First of all, B us just as perfect today as he was before the evaluation. Nothing has changed. Second, you’re absolutely right that if someone can work with your family to better address B’s learning style and sensory needs, you should take advantage of that, especially when he’s still so young. As for the autism discussion, when I was working in birth-3, we did not diagnose and left that up to specialized evaluation teams (whether for autism, cerebral palsy, whatever), but after working with a child and family for a few weeks or months, we were better able to give our input to those teams to give a broader picture of the child than what they might see on a particular day. Sensory processing differences can often look similar to autism, but that’s just one component of an autism diagnosis. The first thing to focus on is writing the IFSP. Just take one thing at a time. And now this comment has become a novel, but if you have any other questions about the process or need to vent some more, feel free to contact me. And go give your boy some deep, calming hugs!

    • futuresoccermom says:

      I’m so glad you wrote this comment – thank you so much. You touched upon many things I’m still in panic mode over, including the fact that I feel like I’m looking at him differently now. I know it’ll pass in a little while but for now, I’m rereading your line that B hasn’t changed, today vs. yesterday. Yet, it’s a struggle to see that. You may be my go-to person on all things Birth-3, since you worked for them! We’re going to start with the IFSP, as you said. I have no idea what’s going to come of it, and my next question is, what services DOES he need? But I supposed time will tell for these things.

      • Daryl says:

        I don’t know how it works in your state or with the agency you’re using, but where I worked, the parents are a big part of writing the IFSP, so what you work on and the services he gets could be partly determined by you. The best advice I can give is to think about what you’d like him to be doing that he’s not doing now, such as using words instead of whining when he wants something. Unlike an IEP, the goals you write should be practical in your daily life, and of course appropriate for a toddler. But I know that, even within my own state, each agency did things a little differently. They should guide you through the process, though, and if you have questions, ask, ask, ask. And of course, I’m happy to help in any way I can. Hang in there, mama. You got this!

  3. randomsqueaks says:

    Scary stuff for a mommy. I am very interested in how things go. My undergrad is in communication disorders (speech therapy) so that will always be close to my heart. Also, my older brother has never been diagnosed but I’d bet money he’d land somewhere on the spectrum. He’s married to a wonderful woman and has a great job in a field he loves, so there’s a happy story for you. 🙂

    • futuresoccermom says:

      That is a happy story! I’ll happily take any suggestions or tricks up your sleeve you have in terms of speech therapy. Suddenly, I’m looking at B in a different way and seeing his areas of concern. Communication is a pretty big problem over here!

      • randomsqueaks says:

        I really wish I had more advice for you, speech-wise. You tend to forget things you learned a decade ago and haven’t needed to remember since. What you’ve said sounds good according to what little I remember. It’s also a little bit hard in that way having twins, because communication is yet another area where they can be different and in need of different parenting.

  4. Theresa says:

    I’m a speech therapist and I work with many birth-3 population. Many of the things you describe do sound sensory related and yes, kids can have sensory difficulties and not be autistic. How is his eye contact with you? Does he enjoy interacting with you? Personally, I’d recommend an Occupational Therapy evaluation in addition to Speech Therapy as they are more trained to work with sensory.
    Please try not to beat yourself up about your parenting style. All you can do is the best you can do with the information you have at the time.Now that you know what he needs you are changing it and that is all that matters. (hugs)

    • futuresoccermom says:

      Thank you for this kind comment! I really appreciate it. I’m full of questions for you, as I feel like I’m entering a brand new world here. B’s eye contact with me is very good – he looks right at me or whoever is talking to him just as much as my daughter does. He does enjoy interacting with me – one of his favorite games is when I take his hands and pull his body back and forth towards me and away from me to the tune of “The Ants Go Marching” (there’s that sensory piece again). He is also a big snuggler – constantly saying “Mama” and curling in for a hug and kiss. So for those two reasons – and I’m not an expert at ALL – but it didn’t seem like it fit the spectrum. Yet, his communication is poor. I am very curious about OT services – what exactly do they do? And I wonder, how can I get B evaluated by them?

      • Theresa says:

        Oh my. I am so sorry. I just realized after reading your next post that I never responded to this! Interaction and socialization are both good signs. Occupational Therapy works on both fine motor skills (like stacking and writing) and sensory – so they can help kiddos with sensitivities or a greater or less than normal reaction to things like textures (foods, clothes) sound, movement etc. You’ve already found this out but the Early Interventionist usually sets up the evaluations by the necessary therapists.

  5. thefamilyvan says:

    It doesn’t seem quite fair when we’re faced with more challenges after we had so many to have these kids in the first place. From everything I’ve read, you are an incredibly dedicated and observant mum to those two lucky little babes. They’re in good hands, and I’m certain you’ll advocate at every opportunity to ensure your kids have a happy and healthy life. I’m sending lots of cyber-hugs for your bravery in sharing your story. It’s a scary thing to open up about the not-so-perfect side to parenting, but what a difference it makes to the mum struggling (i.e., every mum!). I’ll be following your story, and am cheering you guys on from my side of the screen.

    • futuresoccermom says:

      Thank you so much! That’s so nice of you to say, I really appreciate it. After infertility, you’re right – it’s hard to face another challenge. I don’t know, maybe I’m still in the denial stage lol. But I’m just hoping to see some improvements after working with Birth-3.

  6. Tales of a Twin Mombie says:

    Wow, I’m so glad you shared this because I am going through almost the same exact thing with one of my sons. With twins it’s really hard for me NOT to compare the two on a developmental level. When we had a checkup a few months ago (the 18 month appointment) I brought my concerns to the doctor and she took them very seriously. She had me take the M-Chat which is a questionnaire and after looking at my results, recommended that I contact early intervention. I contacted Early Intervention and also contacted a trusted Children’s Hospital out of state so that they could look more deeply into some of the developmental concerns we had. After his evaluation with Early Intervention, he was eligible for three services – occupational therapy, speech therapy (we are on a waiting list), and developmental something or other. Once a month the occupational comes, once a week the developmental person comes, and once a week speech will eventually come. We also had him evaluated for autism. It’s been quite overwhelming but I also feel good knowing that I’m getting my little guy the help that he may need to do well! You’re not alone and if you would like to talk on a more personal level, just shoot me an e-mail at talesofatwinmombie@gmail.com. I can go more into depth about some things but just don’t feel comfortable talking about all of it yet. You’re not alone!

    • futuresoccermom says:

      Wow – thank you so much for your comment! I am going to email you, as a matter of fact. Our twins are the same age and we’ve both been through so much to have them in our lives! It sounds like one of your little guys is in a very similar place as B, and you’ve already got the services set up. I’d love to pick your brain about the things you’re seeing and how you think it’s going. I’ll write up a quick hello email shortly 🙂

  7. JustHeather says:

    First off, you said it yourself: “They’re both so perfect to me that I can’t wrap my brain around something being wrong.” There is nothing “wrong” with your kids, especially B. He may be a bit different/challenged/something else, but he is not broken and there is nothing wrong with him.

    I am glad you listened to your gut and got B checked out. I think that is the best thing you can do for your kids, no matter if there is actually something or not.
    I too have/had no clue about what teething and molars could do to a kid. Paxlet chewed on everything, even the metal bars at the playground, when his molars came in. Thank goodness that is over!

    You’re doing a great job, Megan! (I didn’t realize what your name was until today. I’ve always “known” you as futuresoccermom. 🙂 )

    • JustHeather says:

      p.s. Your parenting style sounds a lot like ours. We’ve always talked to our son (and now daughter), not at him since day one. Our boy is great with words and can express himself quite well (my goodness the stories he comes up with and events of the day he relates to us!!), when he wants to. However, he still has tantrums and screams for what we think is nothing at all, but obviously a bit deal to him…

  8. robin says:

    Early Intervention can be really overwhelming, especially right after the evaluation. When we did it I was looking for support for gross motor skills (at 11mo the kids could not roll over, sit up, etc). I felt judged as a parent and really got very upset, even though the evaluators were nice. They gave me a lot of tips, and once I was able to remember that I am a good mommy and follow the tips, the kids improved drastically – like, huge improvements even before the physical therapist ever came (it was 3mo from the first phone call to EI until someone was in our house and by then both kids were on their way to crawling just from making the small changes the evaluators had suggested).

    There’s nothing you’re doing WRONG, please remember that. You’re doing a good job, as good a job as you know how to do, you are not an expert in these things. The evaluators can give you tips but remember it’s not a judgement on your parenting. Talking to your kids is a lot is a GOOD THING, slowing down makes sense when you want them to understand and respond. (I think the full sentences and normal tones help them understand the rhythm and cadence of speech, but that’s my non-professional opinion, I just slow down and make it more simple when I want them to be more involved) And I think a lot of parents of fussy toddlers jump to fulfilling their needs rather than risk the tantrum of forcing them to communicate! This is a constant battle for me with my Banana, she immediately starts to cry when she needs something or gets frustrated. She speaks already so I can give her a script to follow (“Instead of crying, say ‘I need help'” and then wait for her to say it and then I help her, or “what can you say right now instead of crying” and give her a chance to say it on her own).

    Anyway, give it time to sink in and process, and remember you are a good mommy and your kids are beautiful.

    • futuresoccermom says:

      Thank you very much!! You’re right about the evaluators – our services haven’t started yet and we have seen some small changes already. Clearly this is a good idea. I can’t deny occasionally feeling like I’ve done something wrong – or not done something enough. But I know those feelings will pass. I also agree with you about talking to the kids – and slowing it down only when wanting a response. Good tip!

  9. Amber says:

    I understand this range of emotions, and what it’s like on both sides of the table. Professionally I am a school psychologist, and a large part of my job is evaluation and developing Ieps. As a mom, all four of my kids went through the birth to three program. Three dismissed at a year, but S had speech delays and many sensory issues. She made great gains with the program and was dismissed at 33 months. She still has many sensory issues, which include sensory seeking (eg rocking, stomping, rubbing) and sensory avoidance (leaving noisy areas, playing alone). In her case, autism isn’t suspected, but I think sensory processing disorder and or adhd may be identified later. We are learning how to help her regulate and cope to manage her world. I’m not sure what school will bring for her, but it’s a process one day at a time. I hope that you and B learn from the program and you feel confident in your parenting. You’ve done a great job, and will continue. S’s occupational therapist recommended the type of sensory activities you’ve been doing to help with her sensory issues. Hang in there and remember, baby steps!

    • futuresoccermom says:

      Thank you so much!! Your S sounds a lot like B in that I do believe he has the sensory issues and the speech delay. For whatever reason, they are suspecting Autism right now and I just need to wrap my head around it. I know I’ll get there after a while and I just hope the services help!

      • Amber says:

        I’m confident that services will help him progress. It could be autism, and if it is then laying groundwork now can be a positive. However, as a professional, I think he’s much too young for a definite diagnosis. Little brains are very elastic and can make great gains in a few years time. In the school system, we rarely identify kids under 5-6 with autism because you can get a false positive. It’s not uncommon for kids who looked like they were on the spectrum as toddlers or preschoolers to look less so once they are school age. Instead, we recommend non categorical or speech codes to get them services and intervention. Early intervention is critical, so happy you are starting them! We had a wonderful experience with our therapists, and dismissal was bittersweet.

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