Writing was always very therapeutic for me. I started this blog originally thinking I would share the link with my family and let them keep up with my baby girl, Bug. It became a place to vent in my sleep deprivation, and was my sanity through our last attempt at IVF, and through the birth of our little boy.
It's been a while since i've written. Not because the therapy of writing was gone, but with school and the craziness of 2 young kids, a husband who travels, I just found myself lost in translation, and simply stopped writing.
The last 2 years have been, well, crazy. And now I'm back for a wholly new reason. I need the therapeutic benefits again - for my own sanity.
We have continued to struggle with issues due to the peri anal strep that Bug was diagnosed with years ago, after the initial pediatrician ignored us. We changed peds, included a pediatric GI, resorted to miralax and exalt when I really didn't want to, have had X-rays, clean outs, and find ourselves now in year 4 of dealing with continued encopresis.
She remains on an IEP and continues to struggle. She talks so much, but she's still very unclear, and now we are dealing with some added frustration of having to learn new things in school. That's only going to get worse in first grade, but we added in 'brain breaks' and reviews for her receptive speech as well.
We also started her with a psychologist. We are struggling with sensory issues, depression, anxiety, severe behavioral issues (anger, lashing out both verbally and physically, frustration, etc). Both her and a prior counselor suspect ADHD.
And I'm struggling with it all. Just like she gets frustrated when I sometimes can't understand her, I get frustrated with her (and I shouldn't!!) when she's at her worst, when she's having multiple accidents, when she's refusing to take her medicine, when she's lashing out and hitting, kicking, scratching, screaming at whomever she feels has slighted her. And a slight to her could be as simple as she didn't want you to LOOK at her, at that EXACT moment, in that EXACT way. Even though 2 minutes ago she wanted, DEMANDED you look at her.
I feel touched out, all the time. She's 7 now, but she constantly has to be on you - hanging on you, sitting on your lap, leaning against you. Doesn't matter if you're eating, sitting on the couch, going to the bathroom. She refuses to do anything alone; she won't go to the bathroom by herself, won't come downstairs in the morning alone (and she's an EARLY riser!!! on a good day she's up at 620, on a not good day it's 500am. and everywhere in between). She hangs on you when you try to make dinner.
A few years ago I had my BFF's father in law comment on the amazing amount of patience I had with Bug. I feel like over the years that patience has eroded. I feel like I find myself on the ledge too often, and it breaks my heart, and I feel horrible and I beat myself up when I yell at the kids.
I wonder if I'm picking my battles poorly. And because she melts down every time I tell her no, it makes me second guess and question every. damn. decision I make.
I'm now questioning my own sanity. I'm questioning if I can really be successful at this parenting thing. I'm so scared that I won't raise them to be good people, to treat others right, and to do what works for them; makes them happy. I'm afraid i'm neglecting Bubba because she is so demanding of all effort and energy, and more than half the time it's just me to give it to both of them. I'm trying to find myself a counselor, I'm afraid that I've hit a wall for myself, I think I may be struggling with anxiety myself.
I'm trying to keep it together. I'm trying to reign my own anxiety in. I'm trying not to speak to them too harshly. I'm trying to be the mom they need me to be. I love them so very much, more than life itself. I would do anything for them, I want to be their everything.
Showing posts with label severe speech delay. Show all posts
Showing posts with label severe speech delay. Show all posts
Monday, August 14, 2017
Friday, October 17, 2014
Bugs speech delay will not win
Wow, it's been a bit since I've managed to write. So much for a computer helping to make that happen :-) Needless to say, school, work and the kids have kept me busy!!
So when we bought a house back in April, one of the things that we looked for, as I'm sure most, if not all, parents do, was a good school district. Shortly after moving I outreached to the school district to talk to them about getting Bug assessed.
Let me back up a step. I've mentioned many times that Bug has a speech delay. Well initially we had her assessed b Early Intervention back at 18 months. We used them until she hit age 3, which is when she aged out. They would have transferred her over to the school district at that time, but we did NOT like the school district we were in, and therefore went on our own and worked with her, did the speech therapy thing, etc.
So I knew that at 3 we could get help.
Well we moved shortly before her 4th birthday. So I called the new school district and asked them about getting her assessed. It was at the end of the school year, so they sent me out the paperwork but advised that an assessment wouldn't happen until the new school year. Which I was OK with. I actually even held off on sending the paperwork for a bit so that I could send in the most up to date information. So I sent it in early August.
They came out and did an initial assessment at home. K and I were both here, and we actually got her to say a lot during this initial assessment. At the beginning of the assessment, the woman doing it let us know the steps of the process. The initial at home assessment, then if they determined the child warranted further review a play assessment at one of the schools where a team of people assess and make the decision together. Then they would decide at what level of need the child was at. For example, just speech therapy in the home, or maybe at her current daycare, all the way up to being eligible for the school districts preschool program.
So they did the in home assessment, and before the woman left she advised that they would want to bring Bug in for a play assessment.
So we took her in for the play assessment. K handled the majority of that assessment as I was only able to stay for a little while. They let me know before I left that they would schedule a meeting after they had a chance to meet and decide what to do, and that meeting would be either a 'your child is fine' kinda meeting, or they would present their findings and an IEP.
When I talked to K after the play assessment was over, I asked him what he thought. He said they eluded to the fact that she would be eligible for some services, but we weren't sure what. It took a few weeks before I got the call, but they scheduled an IEP meeting. Based on the call I knew it was an actual IEP meeting and not a 'give your kid a break, she's fine' meeting. And I was happy about that - she has come so far, but I think we need the professionals to be back in the mix now.
So, I went to the meeting. K wasn't able to come, but my mom was, and I was really glad that she was able to tag along.
It was kinda crazy when I got there and there were 5 people in the room. I felt a bit stressed about that at first. There was the speech therapist, 2 preschool teachers, the school psychologist and the person who did the initial at home assessment. They started off the meeting by going over each of their individual thoughts/findings/assessments of Bug. Nothing was surprising.
The speech therapist then went over where she fell on her language skills. They found her receptive language just barely normal, which is what i expected. I think she's got better receptive then what they gave her credit for, but knowing my daughter like I do, she didn't show them everything she can do. She gets shy, and when pushed in a situation she's not fully comfortable in she kinda shuts down. And they did say she didn't talk much for them, in fact, the speech therapist sat outside the bathroom door when K took her to the bathroom, because she was fighting him on going - and using her words. Yeah, that's my girl ha ha.
Anyways, then the part that made this mama cry came in. They diagnosed her with a developmental delay. That was HARD. Her score was WELL below normal. But they all said (and I've often wondered) that they think part of it is her significant speech delay. What they told me is that a developmental delay in educational terms is different than the medical term. It's given to children ages 3 - 5 who show delays in pre academics. Things like rote counting to 10, recognizing shapes, colors, numbers, letters, etc.
She struggles with these things. We work on it, but she still struggles.
So it wasn't a surprise. But the fact that she fell so far below normal was enough to break me down.
In the end, she qualified for their preschool program. So Monday through Thursday morning she'll attend preschool in our school district from 8:35 - 11:05. She will get 40 minutes of speech therapy a week. Her IEP is very detailed with the goals they are aiming for in terms of words and/or signs that others can understand, the number of capital letters she will recognize, how far she can rote count, etc. The school district will pick her up at daycare and drop her back off; and a car seat will be used (yeah!!).
She is the 9th child in the class, and they can have up to 12. No more than 4 of them can be 'typical' peers. They have 1 teacher and 2 aides, plus the speech therapist that comes in on Mondays. Amazing ratios. I have very high hopes. I'm happy with the school district so far.
I got a chance to talk to her teacher, and I LOVE him. He was actually doing a play assessment with another little boy when we took Bug in for hers, and I could tell just how good he is with kids. Talking to him reiterated that fact. You can tell he's in it for the right reasons.
So, the IEP meeting was last Friday. We are still working on getting the transportation set up since pick up/drop off isn't at home. But yesterday K drover her and took her to the program so that she could have someone there for her first day, as well as having a day break on Friday to help let it settle in.
K really likes the teacher too, and that's a wonderful wonderful thing.
So. Here's to the next phase in our lives. Here's to getting our Bug the additional help she needs, and here's to hoping that this time next year I'll be telling you all about the person my little girl is; and not just what I know because I know her, but what I know because she is TELLING me.
So when we bought a house back in April, one of the things that we looked for, as I'm sure most, if not all, parents do, was a good school district. Shortly after moving I outreached to the school district to talk to them about getting Bug assessed.
Let me back up a step. I've mentioned many times that Bug has a speech delay. Well initially we had her assessed b Early Intervention back at 18 months. We used them until she hit age 3, which is when she aged out. They would have transferred her over to the school district at that time, but we did NOT like the school district we were in, and therefore went on our own and worked with her, did the speech therapy thing, etc.
So I knew that at 3 we could get help.
Well we moved shortly before her 4th birthday. So I called the new school district and asked them about getting her assessed. It was at the end of the school year, so they sent me out the paperwork but advised that an assessment wouldn't happen until the new school year. Which I was OK with. I actually even held off on sending the paperwork for a bit so that I could send in the most up to date information. So I sent it in early August.
They came out and did an initial assessment at home. K and I were both here, and we actually got her to say a lot during this initial assessment. At the beginning of the assessment, the woman doing it let us know the steps of the process. The initial at home assessment, then if they determined the child warranted further review a play assessment at one of the schools where a team of people assess and make the decision together. Then they would decide at what level of need the child was at. For example, just speech therapy in the home, or maybe at her current daycare, all the way up to being eligible for the school districts preschool program.
So they did the in home assessment, and before the woman left she advised that they would want to bring Bug in for a play assessment.
So we took her in for the play assessment. K handled the majority of that assessment as I was only able to stay for a little while. They let me know before I left that they would schedule a meeting after they had a chance to meet and decide what to do, and that meeting would be either a 'your child is fine' kinda meeting, or they would present their findings and an IEP.
When I talked to K after the play assessment was over, I asked him what he thought. He said they eluded to the fact that she would be eligible for some services, but we weren't sure what. It took a few weeks before I got the call, but they scheduled an IEP meeting. Based on the call I knew it was an actual IEP meeting and not a 'give your kid a break, she's fine' meeting. And I was happy about that - she has come so far, but I think we need the professionals to be back in the mix now.
So, I went to the meeting. K wasn't able to come, but my mom was, and I was really glad that she was able to tag along.
It was kinda crazy when I got there and there were 5 people in the room. I felt a bit stressed about that at first. There was the speech therapist, 2 preschool teachers, the school psychologist and the person who did the initial at home assessment. They started off the meeting by going over each of their individual thoughts/findings/assessments of Bug. Nothing was surprising.
The speech therapist then went over where she fell on her language skills. They found her receptive language just barely normal, which is what i expected. I think she's got better receptive then what they gave her credit for, but knowing my daughter like I do, she didn't show them everything she can do. She gets shy, and when pushed in a situation she's not fully comfortable in she kinda shuts down. And they did say she didn't talk much for them, in fact, the speech therapist sat outside the bathroom door when K took her to the bathroom, because she was fighting him on going - and using her words. Yeah, that's my girl ha ha.
Anyways, then the part that made this mama cry came in. They diagnosed her with a developmental delay. That was HARD. Her score was WELL below normal. But they all said (and I've often wondered) that they think part of it is her significant speech delay. What they told me is that a developmental delay in educational terms is different than the medical term. It's given to children ages 3 - 5 who show delays in pre academics. Things like rote counting to 10, recognizing shapes, colors, numbers, letters, etc.
She struggles with these things. We work on it, but she still struggles.
So it wasn't a surprise. But the fact that she fell so far below normal was enough to break me down.
In the end, she qualified for their preschool program. So Monday through Thursday morning she'll attend preschool in our school district from 8:35 - 11:05. She will get 40 minutes of speech therapy a week. Her IEP is very detailed with the goals they are aiming for in terms of words and/or signs that others can understand, the number of capital letters she will recognize, how far she can rote count, etc. The school district will pick her up at daycare and drop her back off; and a car seat will be used (yeah!!).
She is the 9th child in the class, and they can have up to 12. No more than 4 of them can be 'typical' peers. They have 1 teacher and 2 aides, plus the speech therapist that comes in on Mondays. Amazing ratios. I have very high hopes. I'm happy with the school district so far.
I got a chance to talk to her teacher, and I LOVE him. He was actually doing a play assessment with another little boy when we took Bug in for hers, and I could tell just how good he is with kids. Talking to him reiterated that fact. You can tell he's in it for the right reasons.
So, the IEP meeting was last Friday. We are still working on getting the transportation set up since pick up/drop off isn't at home. But yesterday K drover her and took her to the program so that she could have someone there for her first day, as well as having a day break on Friday to help let it settle in.
K really likes the teacher too, and that's a wonderful wonderful thing.
So. Here's to the next phase in our lives. Here's to getting our Bug the additional help she needs, and here's to hoping that this time next year I'll be telling you all about the person my little girl is; and not just what I know because I know her, but what I know because she is TELLING me.
Sunday, July 27, 2014
Bug
My dear Bug.
Today, July 25, is a great day.
It’s an amazing day in your life.
It’s another milestone that makes me smile at the same time that it makes me cry.
Today, you turn 4. 4! Where has the time gone?
During those 4 years you have left me sleepless and happy, amazed and sad. Frustrated and excited, proud and exasperated. Loved and hated, speechless and crazy. A range of emotions that I never knew I could feel, especially such drastic and different emotions at the Exact. Same. time.
Every day you introduce me to you. To the you that you continue to unlock. To the you that you determinedly show me. To the YOU that you are deciding to be. To the YOU that you were meant to be.
My bug, you are stubborn. Oh you are so so stubborn. You are lively and funny. You have an amazing sense of humor and you LOVE to laugh. And that laugh, oh that laugh. It’s contagious. When I hear it I can’t help but to want more. To try to do anything in my power to coax it out of you. And you think you’re hilarious. You love to joke and be silly, to be tickled and swung around.
My bug, you are sweet. A cuddler at heart. The way you’ll grab me and give me hugs and kisses makes me laugh. Especially when the kisses are so random and in random places. Like my arm. Or my leg, or my tummy, and yes, sometimes even my butt. The way you love to sit on anyone’s lap that will let you (unless it’s a stranger).
My bug, you love to dance and jump in puddles. You love to play with cars and trucks. You think it’s hilarious to get dirty while you eat.
My bug, you are a perfectionist. If you can’t do something, you get SO SO frustrated.
My bug, you are not potty trained quite yet. You’re getting close, and have been wearing big girl underwear all week to daycare, accidents and all. You are speech delayed and that causes frustration with everyone. But these 2 things don’t define you, they make you YOU and are a part of who you are, and that YOU is beautiful and loving and so so perfect to me.
My bug, you hate to be called a baby. That’s been hard for me as I so want to call you my baby girl. But you’re insistent that you’re a BIG GIRL.
My bug, you love to act like a kitty cat. You chase me around on all fours meowing.
My bug, you love your mommy and daddy and nana, your papa and bubba. Even when you’re mad and say you don’t.
My bug, you are my everything. My sweetheart, my beautiful girl in heart and soul. You are everything I wished for and so much more than I ever expected. You are the true light of my life, some days the only thing that keeps me going.
My bug, you have taught me so much more than I ever expected when you first graced this world at a tiny 7 pounds, 2 ounces.
You have taught me patience.
You have taught me how to be a mom, how to love like I’ve never loved before, how to keep going even when the days are tough and I just want to lie down and do nothing.
You’ve taught me that personality and heart is what defines a person, even at this tender age, not those things that you have or have not done ‘on time.’
You have taught me how important it is to fight for what YOU need, and you have taught me how to push even when I’m afraid to do so, to ensure that you get just that.
You have taught me what it means to carefully care for the seed you’ve planted.
You have taught me how to love myself because the way I love ME is a direct reflection of how you will love YOU as you get older.
You have taught me to love my body, flaws and all, because the way I love my body is a direct reflection of how you will love your body when you get older – flaws and all.
You have taught me the meaning of Love. I thought I knew love before you. And I did, but not fully. Now I do, and every second, every minute, every day, week, month and year I learn more about love, and the highs and lows that is love, and I love more and more than I ever thought possible.
You have taught me patience.
You have taught me how to better interact with people, how important it is to keep judgment out of my voice, body language and speech. How to see the person through a child’s eyes, and not the mistakes I perceive they have made.
You have taught me about the beauty of a childlike innocence. That saying ‘apple juice helps me poop’ is a completely natural thing to say, no matter where you are.
You have taught me that my relationship with your daddy is of utmost importance. And that even when he’s gone and life as a part time single mommy of 2 kids gets in the way, that it is important that I ensure that our connection and communication is there and kept strong.
You have taught me patience.
And you have taught me Love.
Today, July 25, is a great day.
It’s an amazing day in your life.
It’s another milestone that makes me smile at the same time that it makes me cry.
Today, you turn 4. 4! Where has the time gone?
During those 4 years you have left me sleepless and happy, amazed and sad. Frustrated and excited, proud and exasperated. Loved and hated, speechless and crazy. A range of emotions that I never knew I could feel, especially such drastic and different emotions at the Exact. Same. time.
Every day you introduce me to you. To the you that you continue to unlock. To the you that you determinedly show me. To the YOU that you are deciding to be. To the YOU that you were meant to be.
My bug, you are stubborn. Oh you are so so stubborn. You are lively and funny. You have an amazing sense of humor and you LOVE to laugh. And that laugh, oh that laugh. It’s contagious. When I hear it I can’t help but to want more. To try to do anything in my power to coax it out of you. And you think you’re hilarious. You love to joke and be silly, to be tickled and swung around.
My bug, you are sweet. A cuddler at heart. The way you’ll grab me and give me hugs and kisses makes me laugh. Especially when the kisses are so random and in random places. Like my arm. Or my leg, or my tummy, and yes, sometimes even my butt. The way you love to sit on anyone’s lap that will let you (unless it’s a stranger).
My bug, you love to dance and jump in puddles. You love to play with cars and trucks. You think it’s hilarious to get dirty while you eat.
My bug, you are a perfectionist. If you can’t do something, you get SO SO frustrated.
My bug, you are not potty trained quite yet. You’re getting close, and have been wearing big girl underwear all week to daycare, accidents and all. You are speech delayed and that causes frustration with everyone. But these 2 things don’t define you, they make you YOU and are a part of who you are, and that YOU is beautiful and loving and so so perfect to me.
My bug, you hate to be called a baby. That’s been hard for me as I so want to call you my baby girl. But you’re insistent that you’re a BIG GIRL.
My bug, you love to act like a kitty cat. You chase me around on all fours meowing.
My bug, you love your mommy and daddy and nana, your papa and bubba. Even when you’re mad and say you don’t.
My bug, you are my everything. My sweetheart, my beautiful girl in heart and soul. You are everything I wished for and so much more than I ever expected. You are the true light of my life, some days the only thing that keeps me going.
My bug, you have taught me so much more than I ever expected when you first graced this world at a tiny 7 pounds, 2 ounces.
You have taught me patience.
You have taught me how to be a mom, how to love like I’ve never loved before, how to keep going even when the days are tough and I just want to lie down and do nothing.
You’ve taught me that personality and heart is what defines a person, even at this tender age, not those things that you have or have not done ‘on time.’
You have taught me how important it is to fight for what YOU need, and you have taught me how to push even when I’m afraid to do so, to ensure that you get just that.
You have taught me what it means to carefully care for the seed you’ve planted.
You have taught me how to love myself because the way I love ME is a direct reflection of how you will love YOU as you get older.
You have taught me to love my body, flaws and all, because the way I love my body is a direct reflection of how you will love your body when you get older – flaws and all.
You have taught me the meaning of Love. I thought I knew love before you. And I did, but not fully. Now I do, and every second, every minute, every day, week, month and year I learn more about love, and the highs and lows that is love, and I love more and more than I ever thought possible.
You have taught me patience.
You have taught me how to better interact with people, how important it is to keep judgment out of my voice, body language and speech. How to see the person through a child’s eyes, and not the mistakes I perceive they have made.
You have taught me about the beauty of a childlike innocence. That saying ‘apple juice helps me poop’ is a completely natural thing to say, no matter where you are.
You have taught me that my relationship with your daddy is of utmost importance. And that even when he’s gone and life as a part time single mommy of 2 kids gets in the way, that it is important that I ensure that our connection and communication is there and kept strong.
You have taught me patience.
And you have taught me Love.
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