babies, developmental delay, first time mom, identical boys, military life, pregnancy, SAHM, twin pregnancy, twins

Our Journey with Speech and Occupational Therapy

I wanted to put that image I found because I realize how true it is after having kids. The boys were born early, as are many twins, but I didn’t think that was going to be a problem….for the most part it wasn’t. They didn’t have any major complications, had a fairly short NICU stay (2&3 weeks) and they were healthy. I was hopeful things would be good, they’d catch up on the growth curve and wouldn’t have any major delays. Of course as a mother you want your children to be perfect and as long as they were healthy they were, but I started noticing some things that made me question if I was overreacting or there was something there. Here is the journey we’ve been on for the past 4 years.

The beginning

When I first noticed something was wrong

Since the boys were babies they were pretty quiet. Everyone used to comment on how “well-behaved” they were. Really, they’re babies, how can they be well behaved at this age? I flew with them around 4 months old and everyone on the plane was so delighted at how quiet they were. Ok I get it, having babies on an airplane can suck sometimes with them being babies and all (crying, screaming, hours of just hearing annoying babies). I was so worried as it was traveling with twins, I was so paranoid they’d be THOSE babies on the plane screaming, crying…it just gave me anxiety thinking about it. Luckily they were fine, they were perfect angels and everyone else noticed and commented on down the aisle on the wait out. I was like “Hell yeah, I got me some great babies! *high-five*)

 

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First California tri

When we’d go out to restaurants we got the same thing. In th beginning I used to think wow, I lucked out! Quiet babies. Well behaved babies…but after a while it started to worry me. Around 6 months of age I started noticing how quiet they were and it seemed like it was too good to be true. I knew other moms with babies around the boys’ age and they weren’t doing anything like them in the “talking” department.

By 6 months of age babies should be babbling, they should be loud and they should be making their presence known.

Speech Sound Development for a 6-Month-Old:

At 6 months of age, children should be exploring their vocal systems.  They should begin playing with sounds and making noises.  According to the Liguisystems Guide to Communication Milestones, a 6-month old should do some of the following things:
  • Plays with voice and mouth by squealing, growling, yelling, and blowing raspberries
  • Produces vocalizations that vary weekly and daily
  • Produces a variety of vowel-sounds
  • Begins doing some experimenting with putting a consonant and vowel together, like “buh” or “gah”

But they weren’t doing a majority of those things.

 

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6 months old

 

Naturally, I ask Dr. Google things and start to worry, eventually I calm myself down and chalk it up to being premature. I asked my husband what he thought but since we were first time parents, we both were like “They were early, we have some time.” I brought it up to their Pediatrician and she said if they’re not doing more things by X months, we may have to look into options but let’s give them some time since they were premature.

Ok, yeah, that sounds good. Let’s wait. I’ll enjoy these quiet babies for a little while longer. Don’t panic, don’t panic.

Things weren’t getting any better

So as the months go by the boys were hitting some physical milestones, which made me feel better. I figured they were more focused on the physical aspects of growing vs verbal/communication so I wasn’t too worried. But they turned 9 months, so the worried mama came back. Since I was still friends with those moms, as moms tend to do, I did the good ole comparing my kid vs their kid. I would read all these things their kids were doing/saying and how their kid was communicating with them.

What? Our kid is supposed to communicate with us by now?

We were doing our part, we were talking to them, if they wanted something we’d say the words….we thought we were doing everything right. This was our first time but we didn’t talk to them like babies, no baby talk or anything like that, we talked to them like a normal person. I researched things and they said that’s what your supposed to do. Great. So, why aren’t they talking?! By this age they were getting into their little fits and boy were those fun to deal with. I just assumed they were regular tantrums but then they started tapping their heads on their crib for fun, well, really anywhere for fun. They’d do it sometimes until they’d nod off to sleep in their bed. Something just didn’t feel right about it all. It just felt like I needed to do something, almost 1 year olds should be saying more words besides just blowing raspberries and yelling.

We saw the pediatrician again and after their visit she basically tells us “They should be saying X amount of words by now and communicating with you. If you’d like, I can refer them to a speech pathologist.” That was such a hard thing to hear, that your kid may potentially have a delay and need help.

I don’t mean to sound high and mighty or come off like “How can MY kid need help?!” It was just such a punch in the gut feeling, it felt as if I failed. My first gig as a mother and I can’t get my kids to talk. What did I do? Where did we go wrong? I must be doing this wrong, or that, or……just going around and round the guilt carousel. I know it wasn’t the end of the world, but to me, it felt like it at that moment. I was so scared there was something else wrong with them.

Getting them help

The pediatrician put the referral in and after 2 weeks we were being seen at Early Intervention in Virginia, there it was called the Infant & Toddler Connection. We had one meeting with paperwork and then scheduled eval appointments. (as far as I know, all states have this program, if the child qualifies it’s free.)

We had their hearing checked to rule out any other problems along with their vision. I brought them in the room, one by one and they went through a series of questions for myself, asked the boys and played games to asses them. When you go to these things, even if your only concern is speech, they cover all bases and check everything to see if there are other things going on you might have missed. During their assessment I mentioned that they didn’t talk, they hardly babbled and if they did make sounds it was just two “ba” and “da”. They also had this weird thing where they liked to tap their head on things, their crib, the couches, the walls and floor. Nothing hard but I did mention it during our first meeting.

After that initial assessment they said that the boys were delayed. Speech they noticed they were at about a 4 month delay and were behind in other areas but nothing too severely. So, with those findings a speech therapist and an occupational therapist was sent to our house to do a more thorough screening. She needed to make her own assessment of what level they were at and the OT came to watch them from afar as they crawled and played. After looking at the boys I heard the words I was dreading:

Your boys have a pretty significant speech delay.

I thought hearing that kind of statement from the Dr was enough to prepare me but hearing it from ones who specialize in the field, it hit me hard in the feels. I started to choke up and cry a little.  It was just a feeling of defeat. I felt like I failed my children, my first time being a mom and I caused my kids to have a speech delay. Not just a regular one, a pretty significant one! Their receptive language was very behind as well as their cognitive, if I remember correctly she said they were more on the level of a 6 month old. When I say they were quiet, weren’t talking or communicating, I wasn’t kidding. Two words, “ba” and “da”.  As far as the head banging thing the OT said that it’s relatively normal for their age, and for boys but just to keep an eye on it and if they start hurting themselves, they may need to be seen.

Starting therapy

Some might be thinking these and I’ve also had people telling me:

“Some kids take longer to talk”

“My kid didn’t talk until __ and he/she’s fine”

“They’ll talk eventually”

“They were premature, they’ll catch up”

“Some kids don’t want to talk until they want to”

“Every kid talks eventually. Then you’ll want them to shut up!”

While that’s all true, being a first time mom I didn’t know what lies beyond their age and to me, I just wanted my kids to be normal. Again, they were TOO quiet and I knew if I didn’t try to help them now, I may have bigger problems later on. I’m also one of those people who over think things and sometimes my imagination can run wild with worst case scenarios. I figured what can the sessions hurt? I don’t know what I’m doing and they’ll know how to help.

Doing therapy sessions with 10 month old twin boys was a bit of a spectacle at first  . We tried doing them at the same time but then they quickly realized how fun it was to have two people chase them besides just mommy all the time. After the first few tries I decided it’d just be better to split their time up. That way they get one on one time with her and sh doesn’t have to chase/worry about the other one. While she was downstairs with Liam, I’d be in another room with Evan keeping him busy for 30 min. After a while I quiet enjoyed that time. It was really the only chance I got to get one on one time with the boys and it felt like they enjoyed it too. Having twins is hard on a mom, splitting your attention between the two and each one wants your undivided attention.

Some may be thinking “What? Speech therapy with a baby?!” It’s odd to hear, I mean yeah, they’re babies. Truth is you can’t really do too much with a baby so it was mainly play. She’d read some books, make sounds, play games, sing songs….just regular, everyday stuff. It all seemed like nothing special but I watched her and she gave me tips/tricks to try with them. Those  next few months I learned so much. I realized how important doing little things with your babies helps develop their speech. So many light bulbs went off during that time.

The middle

Ongoing therapy

As months went by and they got older, her approach would change and she’d note their progress. During these few months their behaviors changed. Their tantrums became more violent, their head banging became harder and it turned into a way to vent their frustrations. The boys had been in therapy for a few months now but hadn’t made much progress IMO. The therapist reassured me they were changing and pointed some things out but I just couldn’t see it. (Now I reflect and can remember the changes that were made but couldn’t at the time) I took them to an ENT (ear nose and throat doctor)  to ask about their lip ties effecting their speech. They had class IV lip ties but he said because they were still eating and gaining weight fine, it shouldn’t cause any problems. They just had some slow progress, progress nonetheless but it was still slow. These months were hard on me because of their behavior and tantrums. Once their head banging started getting worse we had the OT come back to look at them. She gave us some tricks to use and they seemed to work. Around this time the boys decided that they wanted to be mouth stuffers as well. They have always been big eaters but we had some gagging issues because they’d shove so much food in their mouths! I only gave them a couple of pieces at a time to help prevent it but they were angry when they didn’t have a constant flow of food. They never did choke, thank goodness, but would gag from all the food they’d shove in their mouths. They’d eat it all, but it was still a sight to see. Everyone used to comment on how much they ate. This kids were putting away a Denny’s Jr Slam within a few minutes!

It wasn’t only food either, these kids shoved EVERYTHING in their mouths! They were around 14 months and they were still shoving everything they could find into their mouths. Luckily they never swallowed anything but they’d just mouth everything. Seriously, I’m not joking when I say they’d shove everything in their mouths! (Picture petrified dog poop found in the backyard) It was such a hard time and it only continued from then on.. heck at 4 yrs old they still sometimes do it! (not the poop though ;))

I had the ST talk to the OT and she ended up giving me tricks to try with for their mouth stuffing, but she still said everything I mentioned fell into the norm for kids their age. WHAT?!

She WAS the expert after all and since they weren’t causing any harm to themselves, it wasn’t really an issue. Yet.

We continued with their therapy until we moved. By the time we finished up in Virginia they were starting to sign a bit and were saying a couple of words but it still wasn’t where we wanted them to be. They were 18 months when we left and still at the speech level of a 12-14 month old.

When we moved here to NC we transferred services. The boys were still eligible until the age of 3 so we saw Early Intervention here in NC. We took the boys in to be evaluated and I mentioned the mouth stuffing, head thing and all that jazz again. This time we had a separate eval for the boys with the OT and they were put into services. She noticed they had decreased muscle tone, she would work with them on mouth stuffing and spacial awareness to see if that’d help with other things. Each one had therapy twice a week for 30 minutes and OT once a week for one hour here at home. The schedule wasn’t too bad but with my daughter in the mix of things, it was starting to become a juggling act taking everyone out constantly.

Now, I’m lightly glazing over their tantrums and head banging because it was such a hard thing to go through but now I realize it was due to their speech. When I mention head banging, I mean they were starting to REALLY go at it with their tantrums. They went from tapping, to banging to slamming their heads on things. What I thought may just be a boy thing quickly went to an “Oh shit, wtf is going on with them?” thing.

We’re talking about head banging tantrums with blood dripping out of their noses. I lost count over how many times I’d go into their room to get them to stop hitting their heads, only to see them get up with blood soaked onto their clothes and into the carpet, as if it were nothing. On top of them still not really talking, they were now doing this to me.

During the next few months to a year the boys started to make a big change. I’m not sure if it was the age but they were now almost 3. They seemed to connect with their speech therapist and started to make progress! With that speech progress came improvement with their tantrums and other things. With their OT they were staring to do more physical things. Before they wouldn’t jump from certain heights, wouldn’t do any upper body movements, just normal things 2 year olds would do when they play. Now they were jumping off of ledges, doing spins, hanging from bars and lots of fun preschooler things. They were more confident in how their bodies moved, which has gotten them in some trouble heh but they were just happier. They were able to keep up with kids on the playground because of all the things she was working with them  on.

The end

After the boys turned 3 they were transferred from Early Intervention to the state. They qualified for a free pre-k program at the local school and were receiving speech there on top of seeing their regular therapists. This was both exciting and nerve wrecking for myself. The schedule of doing it all was one thing but I was worried about them still not talking and being in a school setting! Those first few drop offs tugged at my heart-strings but after that, I realized how great it was for them. During this time they made leaps and bounds of improvement. They were receiving speech once a week during school on top of the private therapies and it seemed to be making a difference.

As they started talking more their behavior started to improve. They stopped head banging, throwing wild tantrums and just make my life less miserable. I didn’t have to walk out of places with two kids thrown over my shoulder, I didn’t have to get the stares from strangers after Evan slammed his head into the wall repeatedly after he got mad at me, no more dealing with chimpanzee like children because of being non verbal and just throwing wild tantrums. They were talking now. THEY WERE TALKING! I think the first time they said a sentence to me, I cried. It took 3 years for my kids to actually talk to me and everything became worth it. The horrible guilt I felt, the anxiety I went through, the hours of crying, feeling inadequate and just feeling like a failure were all going away.

Because they were non verbal for so long, they really did develop that twin language I heard so much about. They still use some of it and they’ve become nick names for each other now. When they were first trying to say words, they’d call each other “atta” instead of brother because I’d always refer to the other one as brother. I hear them yelling at each other down the hall and they still call “ATTA!” but then usually one will correct the other and say “I’m not atta, i’m Liam! Don’t call me atta.” It’s crazy to hear that. I still love to hear them talk to me. It drives me nuts sometimes and yeah, it gets annoying (I remember what people used to tell me!) but I still love that they talk to me. I still look at Dan and say “I still can’t believe their having conversations with us.” When he came back from deployment he was blown away at how much they had changed during those 9 months. He left when they were just barely saying words and came home to them telling him stories. Those memories of the past 3 years still are very vivid in my head and even though they drive me nuts with some things, I still love to hear them talk to me.

They’re 4 now , 5 in August and they’ll continue speech at school and privately until we move.

Their speech therapist Laura said to me the other day, which I still can’t believe.

“You know, if they keep this up then they’ll transition out before you guys move.”

I get all sorts of emotions when I remember her say that but it’s still so weird to think about them not being in speech. As far as OT is concerned we’ll see how they do over the next couple of months but I think they’ll be ok from what their therapist tells me.

The future

Since the boys will be 5 this year and can technically start Kindergarten, I’m having an internal debate on what to do. If they are transitioned out that’d be great but I still need to have our IEP meeting with the school to see what her recommendation is for speech. If they are good I think I might keep them in pre-k for one more year. Even though their speech is leaps and bounds where it used to be, I still feel they need the social aspect of another year. The speech delay has prevented them from socializing, that I know. They’re still not like other kids when it comes to their social interaction but that’s a discussion I’ll have to have with Dan.

This whole speech and occupational experience has been a learning experience, for everyone. When I had twins I didn’t think we’d go down this path, but I’m glad we had the resources to be able to get help. Heck, these programs have been apart of our lives for 4+ years now and I’m so thankful I went with my gut. I remember while at a speech session for the boys I picked up a magazine and read an article similar to this. I told you guys about my internal guilt and that article right there just made me feel 1000 times better that morning.

My thoughts on this whole journey

I now know going through this experience the struggles of speech delayed moms. The boys aren’t autistic but I do have  cousin who is high functioning and I often remembered my cousin’s struggles with his speech and getting him diagnosed. I remember her going through the steps to get him help the help he needed and now I’ve had to go through a similar process for the boys. Having a child who can’t communicate with you properly is hard on everyone. I felt bad because they couldn’t communicate with us but I wanted to push them to try as well. There were countless hours of screaming, yelling, crying, frustrations and bad moods on both sides. It was such an exhausting time, especially that age from 2-3, that was the hardest year by far with everything going on. Since I’ve had the other two I’m really seeing how true that article is. Claire was full term and Jacob was as well. Claire has NO problems with speech, I was worried for  little bit when the boys were still learning but she didn’t have any issues. Jacob is still young and but he’s definitely more vocal than the boys were at his age. I’m more confident that theirs is a prematurity thing. Liam has an easier time with annunciation than Evan does, Evan still has a bit more trouble with his annunciation but they are coming along.

PLEASE if you think your child might have a delay, even if everyone is telling you to brush it off or giving reasons as to why not to worry, just go talk to someone. Talk to your Pediatrician. Get the evaluation through Early Intervention if your team of people suspects something or through the school district!

What’s it going to hurt? The evaluations are FREE! There is nothing better than a worried mama’s mind put at ease.

Please if you have any other useful information to add comment below to help anyone else out!

 

Resources:

ASHA- typical speech and language development

ASHA- speech pathology

What you need to know about speech therapy

KidsHealth- Occupational therapy

ASHA- early intervention resource links

U.S. Dept of Education- Early intervention Program

Center for Parent Information and Resources- Transition from early childhood services

Center for Parent Information and Resources- How to get services in your area