The Truth About Being the Mom of a Speech-Delayed Child

When you have a speech delayed child, many people blow it off as being no big deal. No, it’s not the end of the world and yes, kids develop at different rates — but to you and your child, it is a big deal.

You put on a happy face, try to ignore the dismissive comments, and hide how you really feel. There is so much you really want to say. Maybe it’s time you do.

It hurts just to get those child development emails about your child’s current stage. Start learning French? She doesn’t even speak much English. Saying shapes and colors? She doesn’t even say “dog.” This e-mail isn’t about your child’s development, and it hurts to keep being reminded of that.

It hurts to hear all those stories about how other kids someone knows started talking late. You don’t want your child to be behind. You don’t know if your child will get picked on or mocked for not talking. Kids are cruel; they already notice at the park that she doesn’t talk and point it out. They call her a baby. You don’t know if your child is hurt by it, too — she can’t even tell you.

It hurts in the store when strangers ask her a question, get no response or just babble, so give you the, “WTF?!” look. It hurts even more when your child tries so hard to talk to them, just to be ignored or told, “I have no idea what you’re saying. You make no sense. HOW old are you? It’s rude not to answer.” You know she’s trying so hard and these rude people just dismiss her efforts. It’s just plain annoying when people keeping saying, “Can you say, ‘xx’?” No, she can’t. That’s also not the way to encourage a speech delayed child. You’re just too polite to tell the idiot to STFU.

It hurts to constantly have to explain why she doesn’t talk. You feel like you’re betraying your child somehow when you do — yet you don’t want them to think she’s just being rude or doesn’t understand them either.

It hurts when people assume your child is stupid or doesn’t understand what’s being said, just because she isn’t talking. She understands. She understands so, so much.

It hurts reading those bragging Facebook posts from a mom with kids who are the same age — or younger — about how her kid knows shapes, colors, ABCs, said something so cute, or is speaking in sentences. You feel bad being hurt by it, too, as you’re glad their child is doing well. The worst? The posts where so-and-so says their toddler said, “I love you.” You want to hear it oh-so-badly and don’t know when (or if) you ever will.

It hurts to have people keep suggesting you should get her help. Really, it’s aggravating. You’re doing everything you can, have spoken to the doctor, have in-home therapists, even started therapy early. Do people really think you wouldn’t bother to get your kid the proper help? Go stuff it, lady. And to the people who think they know more than the specialists, just because they’re older, had kids, or are a grandmother? They can stuff it, too.

It hurts and is frustrating having a child who is speech delayed. It also hurts to admit that because you feel horrible saying it. No mom wants her child to be behind or suffer. Every mom questions if it was something she did wrong, or didn’t do, when her child has any issue. The self-blame is strong. Admit that it hurts and is frustrating, though, and whoever you tell will be all over you in a second, telling you, “Do you even love your child? Maybe you shouldn’t have had children, you know it just gets harder. Maybe you should give your child up for adoption if you think it’s hard. You’re just belittling her and insulting her by saying she has issues.” Really? Seriously? That crap isn’t even worth answering and is one of the major reasons you have to hide all you feel.

It hurts to be told not to worry about the speech delay. That’s easy for someone to say who hasn’t gone through it, or whose kid advanced with therapy and was done with it almost before they started. Your child still struggles.

It hurts to see your child struggle. It’s a helpless, frustrating feeling to see what she’s going through and to not be able to make it all better.

It hurts to know your child is hurting, but not even be able to tell you. You still see her face fall when people blow her off and walk away, call her a baby, or point out that she isn’t talking or isn’t easily understood with the few words she does say.

It hurts not being able to communicate with your child, who can’t tell you what she thinks, feels, wants, needs — when she should be able to.

It hurts being afraid. So afraid. Why has she made no progress with therapy? Will she improve? Will she be caught up by the time she goes to school? Will other issues show up? Are you just being stupid and worrying over nothing? Will your other child have the same issues?

The short and simple truth is it hurts. It hurts so much, in so many ways, and few truly understand.

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©2015 Melissa Lilly, as first published on Scary Mommy.

Recognizing Autism Spectrum Disorder

Since I've started talking about M2's autism spectrum disorder (ASD) journey (read more here and here) I've had a number of people ask what her specific symptoms are. Even family and friends who don't have experience with autism, or who don't see her often, have asked. I think what the questions stem from is many parents really wondering, "How do you know? What is different so I can see if my kid is on the spectrum, too?" Autism hides from plain view. It isn't easy to spot like some other disabilities. ASD kids look like any other kid on the playground unless you know what you're looking for so it's a normal reaction to want to know how to recognize ASD. With how prevalent it is now, parents want to know how to tell if their own child may have it.

Every single child and case is different. Some kids show symptoms others don't. Some may have many, some may only have a few. Any of the stereotypes you hear about are just that: stereotypes. With ASD, it's really a big picture kind of thing when it comes to autism. Since it's a spectrum, the severity varies greatly as well. Cases toward the high-functioning end may be harder to spot. There is simply no set-in-stone checklist to know for sure if your child has autism spectrum disorder. The best way to find out if your child does have autism spectrum disorder is to take them to see a developmental pediatrician. These are the experts who can give you answers, who know what is neurotypical and what isn't, who know when it's simply a quirk or something more. A and I suspected, but didn't know for sure, until we took M2 to the developmental pediatrician (read about what that was like here).



With M2, we noticed early on that she didn't really play with toys. I always wondered why there are even toys for babies when they do nothing with them and show absolutely no interest. She was also dead focused on learning to do one thing at a time and that is all she'd spend her time doing. Each day, she'd spend almost all her time trying to sit up. Then crawl. Then stand. And so on. Forget helping her with anything, either. Everything had to be done by her, her way, end of story. All of this we pushed aside, figuring she was just determined and independent. Even now, she doesn't play with toys as much as kids usually do. Once we started seeing how different baby B is, we started to wonder.

The big tip off with her is her speech. Her development in this area is far behind what it should be. At first, we thought it was a typical speech delay, which many children have. Then her therapist started pointing out how she doesn't fit in with anything you'd expect with a typical speech delay. As the therapist put it, a whole book could be written just on M2's speech delay. Now we know that the delay stems from the autism.

What sealed it and convinced us something more than M2 just being M2 and having a speech delay was the major changes in behavior. Loud noises bother her. Random noises bother her. She may hear a clock ding the hour proceeds to scream, cry, hold her ears, stomp, kick things, hit and pound the wall. Or, she'll hear the clock and end up in a tight ball on the floor shaking and screaming, "ear ear ear" (well, her sound for ear). Yet another time, she may be fine. The same can happen if she hears traffic, a bird, a dog bark...anything that at that time bothers her. Rain or thunderstorms are sure to set her off. She's not scared of them, it's the sound that is way too much for her to handle. Her senses become over loaded. Similarly, if we're out in public and another child starts throwing a fit, screaming, crying, etc., she'll react to that as well. The noise, plus knowing that something is wrong, overloads her. It's one of the big reasons we so appreciate, and are totally for, people removing misbehaving or upset kids from the situation. When you don't remove your child, mine then ends up terrified and upset so we have to remove her. Our whole day gets ruined when people are inconsiderate like that. The longer the noise lasts, the worse she gets.

Hiding from pictures

Crowds and/or places she doesn't know don't usually go over well in M2's world. To put it simply, she doesn't like them. How she reacts to them are one thing friends and family will point out to try to argue she can't possibly be autistic. People seem to expect an autistic child to have a typical yelling, screaming, kicking, hitting melt down. As I said from the start, each kid is different though. For M2, she shuts down. She does anything she can to get away from the situation. She runs away with no care where we are or where she is going. She won't respond to anyone. She crawls into B's stroller, covers her eyes and hides. If you touch her, she is even more likely to take off. Touch also sends her into a screaming fit. She goes into her own little world, no facial expression, no reaction, no anything.

Once people realize this and actually look at how she's acting next to other kids her age, it's very obvious something is off. As you can imagine, we have to be very careful with where we take her. I also don't take both kids out alone. It's too much of a safety risk when I don't know when or if she'll all of a sudden take off, leaving me having to decide whether to stay with the baby or go after her. I can't be assured that if I look away at something on a self in a store or to help baby B for a second that she'll still be there. She's fast. We always make sure someone is watching JUST her, ready to spring, so that she remains safe.

Upset M2

With other kids, M2 may or may not interact. Most often, she's the one wanting to be alone and do her own thing. A quick hello or a hug, then she's done. I'm not even allowed to play with her most of the time. When I try, she gets mad or upset. Her toys and the decorations in her room are often to be found lined up as well. She'll also be the kid walking on tip toe and toe first.

In M2's case, there are more symptoms than these (such as she hates having her picture taken, is picky with food and has to have things done a certain way). This post would be insanely long if I talked about every one! It's also important to keep in mind that every day with M2 is different, as with most ASD children. Some are good, some are bad, some are very bad. ASD kids don't always show symptoms daily, let alone constantly. It's like Forrest's box of chocolates each day -- you never know what you're going to get. Every day, we start anew and learn more.





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The Journey with Autism Begins

Through sharing our story and being honest and open, I hope it may help someone else going through similar. In light of that, I want to share more of M2's, and our, story. Starting with the day she was diagnosed as autistic and our journey officially began.

As I mentioned here, she was diagnosed with autism, mild-moderate, just over a month ago. That day was one of the most difficult of my life. We went in for baby B's well-child appointment the day before and took M2 along. While we were there, I told the doctor (they have the same pediatrician) that I'd talked to her early-intervention therapy team. All of them recommended that she get screened for autism, especially the therapist she's known the longest and who knows her the best. I was fully prepared to have to argue with the doctor about the screening, then to have to fight with insurance to get the referral pushed through. When the doctor agreed immediately, I was shocked. When he said that there was an available appointment the next morning if I was willing to drive the hour back out to do it, I was dumbfounded. Rather than waiting another month or more for an appointment, I jumped at the one for the next morning. I figured I should before I chickened out and put it off again, as I'd already done for months fearing what we'd be told.

The developmental pediatrician wanted to see all her assessments from the early-intervention team as that would give him a better picture of what all is going on with her. Those therapists see her weekly in our home so they get a pretty good picture, one a doctor who has never met her might not. I quickly called her coordinator to get her assessments, figuring at 4 p.m. there was no way we'd get them. Amazingly, her coordinator was there and sent them over via email immediately.

A and I decided that taking B along with us to the appointment would just be distracting from M2. Instead, he stayed home with B the next morning while I drove M2 the hour back to her developmental pediatrician appointment. I spend the most time with her and have been coordinating her care, so it just made the most sense for me to take her. At the appointment, the doctor got to see the full M2 as she was bouncing off the walls and doing many of the things we were concerned about. She did not sit still for 30 seconds the entire appointment.

I managed to answer all the doctor's questions while keeping M2 from running out of the place. We spent hours there going over everything. I wasn't sure if we'd get a diagnosis that day. I already knew from A's coworker going through the process with his son that if the doctor had any questions or doubts, there would need to be more appointments, possibly with additional specialists. The developmental pediatrician told me that he had seen enough, plus with her previous evaluations, that he was confident in making a diagnosis then.The moment he said, "diagnosis," I knew I wasn't going to like what he said next.

He said there was no question that she was autistic. As soon as I heard that, my stomach dropped and my heart broke. I started telling him things like, "But sometimes she's fine. This isn't all the time!" and, "But she does XYZ." Anything and everything I said, the doctor simply responded nicely with, "That just proves my diagnosis and that I'm right even more. That's exactly what autism is. There is no way you could be making all this up or have it wrong, it's too obvious."

I wanted to cry at that point. Mind you, I am not a crier at. all. Here my happy little girl is bouncing (literally) all over the room and off the walls, as a doctor tells me she is autistic. A diagnosis that changes her life and ours. Something that won't go away, can't be treated with a pill, and that she will struggle with her entire life.

I asked the doctor where he'd place her on the spectrum. He said that it wasn't too important, it was more important to get her set up with therapy and get her help, but that he'd place her as mild-moderate. As for B, he said he is at a higher risk but that I should already be seeing some signs. The signs B is showing us so far are ones that tipped us off to the fact that something is going on with M2. He's totally different from her so far. Things M2 did as a baby that we excused as being just her, something she'd grow out of (but didn't) or just her showing her independence were really red flags. There were so many that we didn't see until we saw how B is and until M2's behavior started making the autism too obvious to ignore. Still, especially after his head injury soon after birth, we worry that he will have special needs as well.

I spent the rest of the appointment trying not to cry in front of this doctor, and especially not in front of M2. How do you act after a doctor tells you that about your child? If I cried, I'd look hysterical and upset M2. If I acted like I didn't care, I'd seem like an inattentive, uncaring mother. If I acted happy, I'd seem like a nut job. No emotion seemed "right" and I had no idea what to say or do. I went with the "upbeat, we can handle this" attitude, even though I was wondering how in the world we'd make it through and how in the world M2 would over come it.

The doctor explained that we needed to get her set up with therapy and that he'd be sending an overview of his diagnosis. He went over why he'd made the diagnosis, pointing out things that I'd never even noticed or equated with autism. Or even any issue. I think if M2 had been the second child and I'd had more experience with what's "normal," I would have noticed more.

After the doctor ended the appointment, a nurse came in and offered to wheel M2 around the center in a wheelchair while I waited for her pediatrician to come in and talk to me. I so appreciated having a few minutes alone. Hearing that your child has autism is difficult. Very, very difficult. I know that it could be so much worse. But that doesn't take away the hurt of what she and we are going through and will go through. No parent wants to know their child is going to struggle. Right now, we don't even know how much. We don't know when or if she'll really start talking. Speech therapy isn't working. Her delay stems from the autism and so far no techniques are working. She also has sensory, behavior and other issues. We have no idea what is to come.

M2's pediatrician came in and told me that he agreed with the diagnosis. The nurse came back with M2, who was ecstatic that she got to go for a ride. She had absolutely no idea what had been going on or how much had just changed in the instant I'd been told she is autistic. Seeing her so happy and so unaware ripped my heart out even more. She has no idea what is to come in her life or that anything is even wrong. I guess in some ways, that's really a blessing that she doesn't know.

The ride home I called A and spent trying not to cry while driving. I'm happy to have a diagnosis and to know it's not all in my head. On the other hand, I'd really have liked to be told, "Lady, your nuts. Stop doing XYZ and your child will be perfectly fine. Just get your act together." Despite that, and despite the doctor telling me that there's no way I could be making stuff up (and that I did an amazing job handling her during the appointment, he was impressed how well I managed to do so), I still wonder if maybe I'd said or done something differently, he wouldn't have given that diagnosis. It's hard not to second guess everything and to wonder.

Since the diagnosis, I've gotten lots of comments and advice. Some downright upsetting, nasty and unsupportive from people from whom I actually expected the most support. Some way off base as the person simply doesn't understand autism or is a family member who also doesn't want her to struggle. Others very, very helpful. Our family and closest friends are offering the support they can. As you read here, one of M2's godmothers is on the spectrum herself. Her reply when being told of the diagnosis was, "Well, I guess she's really lucky to have me as god mom!" And she is. I know Lindsey is going to help her so much through her journey. None of her family or friends are treating her any differently. Family who initially questioned the diagnosis are on board and supporting her once I explained what was going on better. Her uncle asked me why we'd never told him what was going on sooner, when she was a baby, so he would have known and been able to maybe do something. I told him it was because we honestly didn't even realize it ourselves. I think deep down we wondered, but didn't want it to be true.

We still don't want it to be true. I still hope we'll find out in the future that the doctor was wrong. Daily, though, I see why he's right. I also remind myself often of the best, most supportive, and helpful thing I've been told since she was diagnosed as autistic. As soon as we found out, I told her therapists who'd been waiting to hear. One told me, "Remember, she's still the same awesome little girl who you love so much. Having the diagnosis doesn't change her at all. And it doesn't change how much you love her." And she's right. My little girl is freaking amazing.

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The Journey with Autism Begins

Through sharing our story and being honest and open, I hope it may help someone else going through similar. In light of that, I want to share more of M2's, and our, story. Starting with the day she was diagnosed as autistic and our journey officially began.

As I mentioned here, she was diagnosed with autism, mild-moderate, just over a month ago. That day was one of the most difficult of my life. We went in for baby B's well-child appointment the day before and took M2 along. While we were there, I told the doctor (they have the same pediatrician) that I'd talked to her early-intervention therapy team. All of them recommended that she get screened for autism, especially the therapist she's known the longest and who knows her the best. I was fully prepared to have to argue with the doctor about the screening, then to have to fight with insurance to get the referral pushed through. When the doctor agreed immediately, I was shocked. When he said that there was an available appointment the next morning if I was willing to drive the hour back out to do it, I was dumbfounded. Rather than waiting another month or more for an appointment, I jumped at the one for the next morning. I figured I should before I chickened out and put it off again, as I'd already done for months fearing what we'd be told.

The developmental pediatrician wanted to see all her assessments from the early-intervention team as that would give him a better picture of what all is going on with her. Those therapists see her weekly in our home so they get a pretty good picture, one a doctor who has never met her might not. I quickly called her coordinator to get her assessments, figuring at 4 p.m. there was no way we'd get them. Amazingly, her coordinator was there and sent them over via email immediately.

A and I decided that taking B along with us to the appointment would just be distracting from M2. Instead, he stayed home with B the next morning while I drove M2 the hour back to her developmental pediatrician appointment. I spend the most time with her and have been coordinating her care, so it just made the most sense for me to take her. At the appointment, the doctor got to see the full M2 as she was bouncing off the walls and doing many of the things we were concerned about. She did not sit still for 30 seconds the entire appointment.

I managed to answer all the doctor's questions while keeping M2 from running out of the place. We spent hours there going over everything. I wasn't sure if we'd get a diagnosis that day. I already knew from A's coworker going through the process with his son that if the doctor had any questions or doubts, there would need to be more appointments, possibly with additional specialists. The developmental pediatrician told me that he had seen enough, plus with her previous evaluations, that he was confident in making a diagnosis then.The moment he said, "diagnosis," I knew I wasn't going to like what he said next.

He said there was no question that she was autistic. As soon as I heard that, my stomach dropped and my heart broke. I started telling him things like, "But sometimes she's fine. This isn't all the time!" and, "But she does XYZ." Anything and everything I said, the doctor simply responded nicely with, "That just proves my diagnosis and that I'm right even more. That's exactly what autism is. There is no way you could be making all this up or have it wrong, it's too obvious."

I wanted to cry at that point. Mind you, I am not a crier at. all. Here my happy little girl is bouncing (literally) all over the room and off the walls, as a doctor tells me she is autistic. A diagnosis that changes her life and ours. Something that won't go away, can't be treated with a pill, and that she will struggle with her entire life.

I asked the doctor where he'd place her on the spectrum. He said that it wasn't too important, it was more important to get her set up with therapy and get her help, but that he'd place her as mild-moderate. As for B, he said he is at a higher risk but that I should already be seeing some signs. The signs B is showing us so far are ones that tipped us off to the fact that something is going on with M2. He's totally different from her so far. Things M2 did as a baby that we excused as being just her, something she'd grow out of (but didn't) or just her showing her independence were really red flags. There were so many that we didn't see until we saw how B is and until M2's behavior started making the autism too obvious to ignore. Still, especially after his head injury soon after birth, we worry that he will have special needs as well.

I spent the rest of the appointment trying not to cry in front of this doctor, and especially not in front of M2. How do you act after a doctor tells you that about your child? If I cried, I'd look hysterical and upset M2. If I acted like I didn't care, I'd seem like an inattentive, uncaring mother. If I acted happy, I'd seem like a nut job. No emotion seemed "right" and I had no idea what to say or do. I went with the "upbeat, we can handle this" attitude, even though I was wondering how in the world we'd make it through and how in the world M2 would over come it.

The doctor explained that we needed to get her set up with therapy and that he'd be sending an overview of his diagnosis. He went over why he'd made the diagnosis, pointing out things that I'd never even noticed or equated with autism. Or even any issue. I think if M2 had been the second child and I'd had more experience with what's "normal," I would have noticed more.

After the doctor ended the appointment, a nurse came in and offered to wheel M2 around the center in a wheelchair while I waited for her pediatrician to come in and talk to me. I so appreciated having a few minutes alone. Hearing that your child has autism is difficult. Very, very difficult. I know that it could be so much worse. But that doesn't take away the hurt of what she and we are going through and will go through. No parent wants to know their child is going to struggle. Right now, we don't even know how much. We don't know when or if she'll really start talking. Speech therapy isn't working. Her delay stems from the autism and so far no techniques are working. She also has sensory, behavior and other issues. We have no idea what is to come.

M2's pediatrician came in and told me that he agreed with the diagnosis. The nurse came back with M2, who was ecstatic that she got to go for a ride. She had absolutely no idea what had been going on or how much had just changed in the instant I'd been told she is autistic. Seeing her so happy and so unaware ripped my heart out even more. She has no idea what is to come in her life or that anything is even wrong. I guess in some ways, that's really a blessing that she doesn't know.

The ride home I called A and spent trying not to cry while driving. I'm happy to have a diagnosis and to know it's not all in my head. On the other hand, I'd really have liked to be told, "Lady, your nuts. Stop doing XYZ and your child will be perfectly fine. Just get your act together." Despite that, and despite the doctor telling me that there's no way I could be making stuff up (and that I did an amazing job handling her during the appointment, he was impressed how well I managed to do so), I still wonder if maybe I'd said or done something differently, he wouldn't have given that diagnosis. It's hard not to second guess everything and to wonder.

Since the diagnosis, I've gotten lots of comments and advice. Some downright upsetting, nasty and unsupportive from people from whom I actually expected the most support. Some way off base as the person simply doesn't understand autism or is a family member who also doesn't want her to struggle. Others very, very helpful. Our family and closest friends are offering the support they can. As you read here, one of M2's godmothers is on the spectrum herself. Her reply when being told of the diagnosis was, "Well, I guess she's really lucky to have me as god mom!" And she is. I know Lindsey is going to help her so much through her journey. None of her family or friends are treating her any differently. Family who initially questioned the diagnosis are on board and supporting her once I explained what was going on better. Her uncle asked me why we'd never told him what was going on sooner, when she was a baby, so he would have known and been able to maybe do something. I told him it was because we honestly didn't even realize it ourselves. I think deep down we wondered, but didn't want it to be true.

We still don't want it to be true. I still hope we'll find out in the future that the doctor was wrong. Daily, though, I see why he's right. I also remind myself often of the best, most supportive, and helpful thing I've been told since she was diagnosed as autistic. As soon as we found out, I told her therapists who'd been waiting to hear. One told me, "Remember, she's still the same awesome little girl who you love so much. Having the diagnosis doesn't change her at all. And it doesn't change how much you love her." And she's right. My little girl is freaking amazing.

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Wherein I Face the Reality of a Special Needs Child

I've been struggling with this post for a few weeks. I think I'm finally ready to finish and publish it. It's only the first article of many as my family starts this journey.

For awhile now, I've avoided saying it. If you don't say it, it's not true, right? The chance that everything will turn around and change still hangs in the ether. As soon as the words are out, it's like a big boulder comes crashing down in the doorway, making it final. Blocking the escape from the truth. At this point, I can't hide from the truth any more. I need to face the reality.

M2 is a special needs child.

It's nothing to be ashamed of at all, yet it is still difficult to admit. As her mom, I don't want her to have to go through this struggle. I've had to fight through so many things in my life (that's a whole other story), I don't want her to have to as well. I also feel guilty saying it, because I know there are so many kids -- and their parents -- who suffer and struggle even more. Even so, it's the truth that she is special needs.

I'm not calling her special needs for her severe speech delay (at 2.5, she's at a 15-month level and hasn't improved at all since starting therapy in Novemeber). Maybe that qualifies, maybe not. I don't know. It's much more than that.

For the past few months, her behavior has gotten out of hand. Really, that's putting it mildly. She's a ticking time bomb. You never know when or if she's going to go off or even WHY she will. Forget trying to put the pieces back together once she does. You're on damage control at that point. When she's good, she's really good, more well-behaved than a toddler usually is. But when she's having trouble, she's like a mini screaming, destroying, tornado taking all out in her wake. There are also some behaviors that are downright dangerous. I'll go into more details in another post, this one is just meant to be an intro.

At first, we thought it was because of the new baby that M2 had gone from a sweet, normal, pretty well behaved kid to being very difficult. Everything spiralled out of control quickly, with no warning.Getting used to B would make it all go away, right? Wrong. She loves B. Absolutely ADORES him. She's not having issues with having a new baby in the house.

Her speech therapist started noticing the behavior and seemed relieved when I brought it up myself about two months ago. We got her evaluated with an early intervention team who determined that she has sensory processing disorder, known as SPD. There may be more, but we need to see more specialists to determine that.

M2 now gets occupational therapy, but so far nothing is working. It tends to be that things don't work at all, or work once and not again. She has a mix of hypo- and hyper-sensitivity, both seeking and avoiding stimulation depending on many factors. There are no patterns or triggers that we've figured out so far. One time, she may try to avoid something -- like loud noises -- another she may run toward it. The fact that she is SO smart makes things more difficult as well.

One of the reasons (beyond hoping it'd go away) I haven't talked about M2's issues and being special needs, other than speech, is because there is so much stigma and misunderstanding around special needs still. Many barriers and walls need to be broken down still in our society. People need to be educated and need to learn to be more accepting of those who go against the grain of what is "normal." I'm hoping sharing our story helps with this.

Another reason for the silence is that most people just don't seem to get it. So many seem to think it's just normal toddler behavior because they aren't around her all the time to see it or don't understand what is or isn't normal. It's not just a two year old being a two year old. Yes, she was fine when you saw her -- that was a good day. What you didn't see was the hell we faced for the two weeks after that.

Others just don't know what to say, or say they went through it with their kids at this age. No, it's not like that. This isn't normal behavior. I would LOVE to just be going through what you did. Some say that maybe I just don't get how a toddler should behave or can't handle it. Um, EXCUSE ME? Obviously, from your statement, YOU don't know how a toddler should behave and trust me, you wouldn't handle it any better than I am.

Even parents of kids who are special needs don't always get it and question me endlessly, challenging me on what we've been told by the pros, seeming to think they know more about the professionals about diagnosis and her issues. Um, no, you don't. Or, they think that people use the label of special needs just to be "cool" or something. You should know, having a special needs kid isn't cool or fun. It's a struggle every day. I've even had some tell me M2 can't possibly have SPD, it has to be something else because her symptoms aren't the same as their kid's. Uh, hello, every kid is different and M2 isn't the norm of being a seeker OR an avoider. She is both.

Don't get me wrong, we've gotten lots of support as well. I have a wonderful group of fellow stay-at-home moms (my mama tribe) who have given me so much advice and support. They are amazing ladies. Some are dealing with similar themselves so know what it's like. Even those that haven't/aren't going through it offer words of comfort and do their best to help how they can. Family members and other friends have reached out as well. Each does what they can to listen and try to make it easier.

Getting M2 the help she needs and getting us the support we need to help her learn to cope is going to be a long, confusing, difficult road. Just in the past month or so since finding out about the SPD, I've been overwhelmed and have learned there's so much more to it, and to getting her help, than I ever thought. It shouldn't be this difficult or take so dang long to get your child help, nor should you go broke to do so. The system needs an overhaul.

I have so much more I could say. Over time, I will. By sharing our journey, I'm hoping that someone else will feel they're not alone in their struggle. If you're a mom of a special needs kid, I would love to hear your story/advice/suggestions. If you're new to this special needs world like I am, maybe we can help each other through it.

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Wherein I Face the Reality of a Special Needs Child

I've been struggling with this post for a few weeks. I think I'm finally ready to finish and publish it. It's only the first article of many as my family starts this journey.

For awhile now, I've avoided saying it. If you don't say it, it's not true, right? The chance that everything will turn around and change still hangs in the ether. As soon as the words are out, it's like a big boulder comes crashing down in the doorway, making it final. Blocking the escape from the truth. At this point, I can't hide from the truth any more. I need to face the reality.

M2 is a special needs child.

It's nothing to be ashamed of at all, yet it is still difficult to admit. As her mom, I don't want her to have to go through this struggle. I've had to fight through so many things in my life (that's a whole other story), I don't want her to have to as well. I also feel guilty saying it, because I know there are so many kids -- and their parents -- who suffer and struggle even more. Even so, it's the truth that she is special needs.

I'm not calling her special needs for her severe speech delay (at 2.5, she's at a 15-month level and hasn't improved at all since starting therapy in Novemeber). Maybe that qualifies, maybe not. I don't know. It's much more than that.

For the past few months, her behavior has gotten out of hand. Really, that's putting it mildly. She's a ticking time bomb. You never know when or if she's going to go off or even WHY she will. Forget trying to put the pieces back together once she does. You're on damage control at that point. When she's good, she's really good, more well-behaved than a toddler usually is. But when she's having trouble, she's like a mini screaming, destroying, tornado taking all out in her wake. There are also some behaviors that are downright dangerous. I'll go into more details in another post, this one is just meant to be an intro.

At first, we thought it was because of the new baby that M2 had gone from a sweet, normal, pretty well behaved kid to being very difficult. Everything spiralled out of control quickly, with no warning.Getting used to B would make it all go away, right? Wrong. She loves B. Absolutely ADORES him. She's not having issues with having a new baby in the house.

Her speech therapist started noticing the behavior and seemed relieved when I brought it up myself about two months ago. We got her evaluated with an early intervention team who determined that she has sensory processing disorder, known as SPD. There may be more, but we need to see more specialists to determine that.

M2 now gets occupational therapy, but so far nothing is working. It tends to be that things don't work at all, or work once and not again. She has a mix of hypo- and hyper-sensitivity, both seeking and avoiding stimulation depending on many factors. There are no patterns or triggers that we've figured out so far. One time, she may try to avoid something -- like loud noises -- another she may run toward it. The fact that she is SO smart makes things more difficult as well.

One of the reasons (beyond hoping it'd go away) I haven't talked about M2's issues and being special needs, other than speech, is because there is so much stigma and misunderstanding around special needs still. Many barriers and walls need to be broken down still in our society. People need to be educated and need to learn to be more accepting of those who go against the grain of what is "normal." I'm hoping sharing our story helps with this.

Another reason for the silence is that most people just don't seem to get it. So many seem to think it's just normal toddler behavior because they aren't around her all the time to see it or don't understand what is or isn't normal. It's not just a two year old being a two year old. Yes, she was fine when you saw her -- that was a good day. What you didn't see was the hell we faced for the two weeks after that.

Others just don't know what to say, or say they went through it with their kids at this age. No, it's not like that. This isn't normal behavior. I would LOVE to just be going through what you did. Some say that maybe I just don't get how a toddler should behave or can't handle it. Um, EXCUSE ME? Obviously, from your statement, YOU don't know how a toddler should behave and trust me, you wouldn't handle it any better than I am.

Even parents of kids who are special needs don't always get it and question me endlessly, challenging me on what we've been told by the pros, seeming to think they know more about the professionals about diagnosis and her issues. Um, no, you don't. Or, they think that people use the label of special needs just to be "cool" or something. You should know, having a special needs kid isn't cool or fun. It's a struggle every day. I've even had some tell me M2 can't possibly have SPD, it has to be something else because her symptoms aren't the same as their kid's. Uh, hello, every kid is different and M2 isn't the norm of being a seeker OR an avoider. She is both.

Don't get me wrong, we've gotten lots of support as well. I have a wonderful group of fellow stay-at-home moms (my mama tribe) who have given me so much advice and support. They are amazing ladies. Some are dealing with similar themselves so know what it's like. Even those that haven't/aren't going through it offer words of comfort and do their best to help how they can. Family members and other friends have reached out as well. Each does what they can to listen and try to make it easier.

Getting M2 the help she needs and getting us the support we need to help her learn to cope is going to be a long, confusing, difficult road. Just in the past month or so since finding out about the SPD, I've been overwhelmed and have learned there's so much more to it, and to getting her help, than I ever thought. It shouldn't be this difficult or take so dang long to get your child help, nor should you go broke to do so. The system needs an overhaul.

I have so much more I could say. Over time, I will. By sharing our journey, I'm hoping that someone else will feel they're not alone in their struggle. If you're a mom of a special needs kid, I would love to hear your story/advice/suggestions. If you're new to this special needs world like I am, maybe we can help each other through it.

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Find Me on Scary Mommy

I am beyond excited! My first article is running on Scary Mommy today. It's been a dream of mine to be published there. I would love for you to pop over and leave me some love there. The article is about being the parent of a child with a speech delay. I'd like all moms with speech delayed kids to know it's ok to share how they really feel. No mom should have to hide her feelings. Nor should she have to feel afraid or embarrassed to reach out to other moms and professionals to get her child, and herself, needed help and support. Read it here.

Baby2 and M2 Update

Nursery!
Baby2's room completion is near! A and I cleaned out the closet and rearranged ours to fit some of the stuff in there this past weekend. I then got the nursery closest all organized with the swing, hamper, wipes, diapers, humidifier, etc., that we will be needing to have on hand. A put together M2's cubby storage shelving as well. It's still in the nursery until we swap it with the changing table soon. All the fabric cubes are ready to go on the changing table, I got them organized with wipes, diapers, toys, accouterments, blankets and more. Baby2's hospital bag is ready to go as well. Mine is just a list right now as I realized all the stuff I plan to pack I'm actually using. If I pack it, I wouldn't have what I need now! That'd be rather pointless.

All the extra furniture and lamps have been taken out of the nursery. Some books and random things remain but that'll be easy to clean up. I also painted the anchor wall hanging and Baby2's large initial wall hanging so those are ready to go up. The rest of the room decor arrives tomorrow. This weekend, all of that gets put up and I'll put the finishing touches on the room. That leaves yard work, car maintenance, present wrapping, Christmas decorating, house cleaning and some other random things on my to-do list for next week and the week after. There are only three weeks left. Knock on wood, I think everything might actually get done!

Presents!
M2's Christmas and birthday present situation is all sorted. The last of her gifts arrive tomorrow. I've made a list of what she is getting for each. She'll also be getting a small gift from Baby2 when he comes home from the hospital. It's an adorable Melissa and Doug Christmas tree puzzle I found at Kohl's. It's this one. It looks even nicer in person than on the page. M2 saw it when it first arrived. I had to wrestle it away from her as she wanted it right then. She got the Melissa and Doug advent tree decoration/toy, so that distracted her. That is also adorable! It's better than I expected and M2 is loving decorating and taking apart the tree. The ornaments are all so cute with beautiful designs. It's a good size, too. It should last us for years. It's sold out already. Reading the reviews, it's an item that goes fast each year. I can see why! You can still get it on Amazon for a bit more. Check it out here.

Speech!
The therapy for M2's speech delay was finalized last week. Now, we're just waiting to hear from the speech therapist on setting up her first appointment. She'll be doing twice a month to start. Her coordinator thinks she'll pick up on things and progress fast as she's developing fine everywhere else and shows the signs they look for to know the child will pick up the concepts. We're hoping with hard work from her, A and me that she'll be right on track within a year if not less.

Halloween!

She didn't want to wear her hood inside!

Ready to monkey around.

Halloween was lots of fun. We started out visiting my best friend since high school and his wife. M2 loved that we ordered pizza and she got to watch some cartoons Mama wouldn't usually allow. It was then off to see other good friends and celebrate. One went trick-or-treating with us. M2 got the hang of going door-to-door quickly. She loved knocking and waiting for the door to open. Her costume was a monkey and A was a giant banana. I didn't dress up (hardly any of my clothes fit anymore, let alone a costume!) I did manage to walk around to each house. I'd thought after a few I'd be ready to fall over in pain. Stopping at the end of the drives to take a break while M2 went to the door helped. She was so excited and adorable walking along with her glow sticks and kitty cat candy pail. Sadly, our friends are moving cross country next year so this was our last Halloween with them. It's been a tradition the past 6 years or so to spend it with them so it's like the end of an era. We'll have to find trick-or-treating closer to home instead.


Doctors!
Baby2 has had a few doctor appointments (ok, I had the appointments and he got checked out, with no choice but to come along). He's growing fast. I'm measuring about 3.5-4 weeks ahead, which means right now I feel like I'm at 40 weeks. Driving has gotten hard so A has become my driver. My thyroid is acting up so I saw a specialist for that. He doesn't think Baby2 is being affected and I'm handling the symptoms ok, so we're holding off on meds. I'll be doing blood work often and after Baby2 is born we'll be looking into other testing. It's pretty complicated with many ways it could go as my thyroid is all sorts of screwy. There's a small change it'll go back to normal after Baby2 is born. I'm really hoping it does! There are some other worrisome health issues going on. Those I'm not ready to share yet. I've got more testing for that next week, along with the final ultrasound before Baby2's arrival.

Suspense!
Next week, I'll post pictures of the finished nursery. I was tempted to this week then decided we're so close to it being done I'd rather do a big reveal. You'll have to deal with the suspense until then. I'll also show off the easy painted wall hanging I did and explain it--it's sooo easy! The initial one will have to wait until we reveal his name after birth. I will say I am LOVING how the room looks!

A Quick Update: M2's Speech and Baby2

This week has been busy with kid-related appointments and having my parents in town visiting. One of the big appointments was to get M2's speech intervention rolling.

M2's Speech Development
M2 isn't quite where she should be speech-wise. She understands everything, has ways to get her points across, she just won't use words most of the time. Except for a select few, the words she does know she refuses to use often. A and I have been working with her doing everything we can think of to no avail. The pediatrician said we could either start looking into therapy now, or wait until she turns 2. However, when she turns 2 is just after Baby2 is born. Taking that into account, we decided to start intervention now.

When asked what the next step is to get her help, the doctor very helpfully only said to "call the county." The county very helpfully only has info on getting assistance with speech for kids 3 and over. After some research and asking around at library time, I found a place not too far away that specializes in therapy for under age 3 only. The nice lady I spoke too arranged an appointment for initial intake at our house. She came over this week, met M2, asked a bunch of questions, and set us up for the next step of a complete evaluation. In a few weeks, M2's going to have "playtime" with a couple ladies who will do a full eval then give us the results. The woman today said she's obviously very intelligent, we just need to get her to start using more words. It's expected that she'll be on track with everything else.

After the evaluation, our intake coordinator sets M2 up with a therapy plan. The good thing about this organization is that they find it important that the child is in their own environment for therapy. The therapist comes out and word with her and show A and I things we can do with her the rest of the time.

The plan right now is to get all this set up and maybe even get a session or two in before Baby2 arrives. At the least, we'll be ready to go as soon as things settle down with him.

Baby2's Room
Last week, we finally narrowed down the choices of paint colors for Baby2's room to four. Once we get those up on the wall we'll (hopefully) be able to pick one. Right now, there's a futon in there so we can't paint the whole room. The futon needs to go in the family room, which has another couch in it. That one needs to go in the living room which--you guessed it-- also has a couch in it. The hospice we're donating one couch to comes next week, then we can play musical couches and start painting. You can read more about the plans for the nursery here.

At my weekly appointment the doctor said Baby2 is on track. The only downside is that he hasn't flipped yet--he's still breech. He's got a few weeks left to make the flip and I'm hoping he does as I don't want a C-section for a number of reasons (the big one being surgery and I don't mix, at all).

A and I checked out the other choice of hospital for labor and delivery finally. M2 got to spend time with Grandma and Grandpa going to the pumpkin patch, animal park and out to dinner while I was busy with the tour and doctor appointment. It's a good thing we did the tour since we've decided we like the hospital better than the one we were thinking of using. As long as Baby2 doesn't come earlier than 38 weeks, we plan to use the one we toured. The big selling point for me was all private rooms and wireless monitors so I won't have to be strapped down uncomfortably to a bed for hours. That part was NOT fun with M2 and I think labor would have gone faster than the 41.5 hours it took had I been able to move around. I also can't get comfortable in beds sitting up or lying on my back--which is the position I got stuck in so the doctors could have the monitors work.

With less than seven weeks to go, there is still plenty to do on our lists!