What makes a good day at our house? Let me tell you what's been working in our favor lately. This sweet girl has been in such a good mood for 3 major reasons.
1: Her teacher has been allowing less homework. Holy cow! I cannot even begin to tell you what a burden this has taken off of our shoulders. Instead of making her do every part of the homework, her teacher has started "x"-ing out parts that Breanna really struggled with, so she doesn't have to complete that portion. This is AWESOME! Finally we have made a connection with this teacher! It has made a world of difference. She still fights a little to do homework (but really, what kid doesn't.) but she's getting it done in half the time, and she's not crying and arguing as much throughout the whole process.
2: The weather has been beautiful!! Now, we're not having a tropical heatwave, by any means, but it has been nice enough for the past 2 weeks to let this energetic, Big, "little" girl, get her wiggles out by playing outside after school. She has jumped on the trampoline so much, and just played in the grass...oh it makes me happy! Trying to keep her cooped up during the winter months has really not been easy. She did go play in the snow when we had it, but she got cold quickly, and cried because of it. So, this is a nice, much needed change in our seasons.
3: And last, but not least, we have had 2 birthdays in our house, plus a visit from Grandma and Grandpa--all within the last 10 days. She is always asking "what are we doing today after school?" or constantly needing something of significance to her, to look forward to. So, being able to celebrate little brothers' birthdays have been a great "upcoming activity" for her to look forward to. And she's been so surprisingly happy and understanding on their special days.
I'm hoping that with the weather changing, that her attitude will start to take a turn to the positive for the majority of the days ahead. And I'm also hoping it will help with her sleeping habits. She's hopefully going to use so much energy, she'll just tucker herself out, and sleep well, and through the entire night.
We are on a year round school schedule, so we have a break coming up. Breanna is also looking forward to some time off of school. The challenge for me, is to keep her semi-structured, enough so that I don't have the crazy fits while she is home. I don't want her to get bored, or spend too much time watching t.v. and movies. I need to make sure she stayed intellectually challenged and stimulated. Wish me luck!
Hope you have found what makes it a good day for you today!!
Friday, March 21, 2014
Friday, February 28, 2014
This week...our regular roller coaster ride
It seems with my sweet Breanna, that we are on this roller coaster ride. She is such a sweet, loving, caring thing, and the next minute...our roller coaster car takes a huge plumit and heads down-hill at super high speeds. She screams and cries, stomps and wails. It is amazing how quickly her attitude can change. And of course, it can go the reverse course, and she can go from crazy mad--to quiet and calm in the quickest moment.
This week has been o.k. Some of the major "downhills" have been, not getting to sit in the front seat of the car, (she got to sit in the front every other day this week, shouldn't someone else have a turn?) wanting to ride in the truck with her dad, coming home from the basketball game, but there wasn't enough room for her. In this case, I talked the little one into riding with me so Brea could ride with Daddy, but she ended up screaming all the way home anyway...for what reason, I'm not sure.
There were however some amazing ups have happened this week, and when I least expected them. Little sister was playing with Breanna's My Little Ponies while she was gone to school one day. When we got home I waited for the worst. But, instead of losing her cool, she just asked her little sis if she enjoyed playing with them, and asked if they could both play with them outside on the trampoline. Wow. Good work. Another up, She was happy to help with the baby, when mom had to leave the family on the bench in the congregation, to go up front of the chapel to lead the music in church on Sunday. Usually when I leave the bench to take a kid potty, or get a drink, she throws a mighty fit. Yay! Also, we had a read-a-thon at our school this week. Usually we have to fight her to do homework, but 3 out of the 4 days of nothing but reading for Homework--she did it happily! No fighting! Just the once, but those are pretty good numbers in my book. And then my favorite up. She's not a very "lovey dovey" kind of girl. When she was little it was hard to get good--REAL hugs. They always seemed forced, or floppy. The other night she just held out her arms and gave me a good, hard, loving squeeze. It felt so good! I could tell it was coming from a genuine desire to show me she loved me. Good, good moment.
I love this girl so much! Each and every day, we take the roller coaster ride. Some moments are fun, and some a little hard to handle, but it's always worth the ride.
This week has been o.k. Some of the major "downhills" have been, not getting to sit in the front seat of the car, (she got to sit in the front every other day this week, shouldn't someone else have a turn?) wanting to ride in the truck with her dad, coming home from the basketball game, but there wasn't enough room for her. In this case, I talked the little one into riding with me so Brea could ride with Daddy, but she ended up screaming all the way home anyway...for what reason, I'm not sure.
There were however some amazing ups have happened this week, and when I least expected them. Little sister was playing with Breanna's My Little Ponies while she was gone to school one day. When we got home I waited for the worst. But, instead of losing her cool, she just asked her little sis if she enjoyed playing with them, and asked if they could both play with them outside on the trampoline. Wow. Good work. Another up, She was happy to help with the baby, when mom had to leave the family on the bench in the congregation, to go up front of the chapel to lead the music in church on Sunday. Usually when I leave the bench to take a kid potty, or get a drink, she throws a mighty fit. Yay! Also, we had a read-a-thon at our school this week. Usually we have to fight her to do homework, but 3 out of the 4 days of nothing but reading for Homework--she did it happily! No fighting! Just the once, but those are pretty good numbers in my book. And then my favorite up. She's not a very "lovey dovey" kind of girl. When she was little it was hard to get good--REAL hugs. They always seemed forced, or floppy. The other night she just held out her arms and gave me a good, hard, loving squeeze. It felt so good! I could tell it was coming from a genuine desire to show me she loved me. Good, good moment.
I love this girl so much! Each and every day, we take the roller coaster ride. Some moments are fun, and some a little hard to handle, but it's always worth the ride.
Saturday, February 15, 2014
Strengths & Struggles
The first post was super-long, full of information that may seem unuseful to some. So, I thought I'd kind of "catch-up", or get up to date of what she's doing now. I mentioned a few things before, but I'll try to get a little more in-depth. If I sit down to think of her strengths, as well as her struggles, I might just see a few things in a better light.
I'll start with the struggles, as to end on a positive note. Breanna really struggles with anything that has to do with fine motor skills. She has a hard time holding her pencil correctly, therefore struggles writing. She has about the same legibility as our almost 5 year old. She cannot use scissors very well, especially if she has to follow a line. She cannot tie her shoe, I haven't even tried anything with buttons, so I don't know what she would do there. She cannot get a zipper started on her jacket, but she can pull one up that's already been started. She even has a hard time getting herself dressed. Especially if the clothes are a little too tight.
She will sometimes mix up her words when speaking, either words switched in a sentence, or even sounds within a word switched.
She has an extremely hard time sleeping. When she is tired enough, she'll fall asleep fine, but she is a super light sleeper and any noise will wake her up. What's weird, is that this is only when she is sleeping alone, in her own bed. If she is sleeping on our bedroom floor, or in a bed with her siblings, she doesn't wake up as easily. Or if she does, she doesn't actually "get up."
She cannot run very well, she cannot kick a ball well, throw a ball well, catch a ball, or anything of that nature. All of that is really hard.
She gets super upset when something changes, opposed to what she thought was going to happen. Change of plans are really emotional times for her. She cried today when her balloon popped---like she would never see another balloon in her life. She gets upset when others use/touch her things...even when she's not playing with them. (This I know happens in some of my other kids too, so that's fairly normal. ;) )
At 8 years old, she is not reading well, but making progress.
She gets super scared whenever there's a thunderstorm. She absolutely hates lightning and thunder. She used to hate fireworks, but has learned to be o.k. with them, as long as she has her blanket and mom or dad near by. She also used to run away screaming whenever a jet flew by, but she is doing better with that as well.
Brea also still struggles knowing when to use the restroom. We still have accidents...especially when something fun is going on. She just DOES NOT want to stop what she is doing. She thinks that when she leaves, the fun will be gone when she returns. There are times when we also wonder if she is not understanding the 'urge' to use the potty.
She gets distracted very easily. She will lose focus in a matter of mili-seconds. She will be doing one thing, or talking about one thing, and without warning, she is on to something totally different. She can be having an emotional breakdown, crying fit, and something so small with catch her eye and she will stop--instantly--and start talking about the 'new' thought.
She does not understand 'personal space', or being in one's bubble. She doesn't have the common knowledge to know you shouldn't touch people, or stand so close, or walk around someone's home, when you barely know them. She's VERY curious and will go wherever she feels like, whenever.
There are many things that she is strong at. She has a fantastic memory! Now, the crazy thing is, her short term memory, is not all that great. Or when it comes to things of scholastic value, like anything having to do with math facts or spelling. (In fact, she just barely started spelling her name correctly. She was constantly mixing up the letters!) But, anything that has an emotional connection to her, she can tell you. She remembers things that happened on family trips from years ago, trips to Grandma and Grandpa's house, Holiday memories, etc. Anything that meant something special to her--she remembers every detail. She also will not let us forget important events that are upcoming.
She has a great deal of sympathy. She has always been very compassionate, and caring. Not as much with her siblings (ha ha) but with friends at school and church, neighbors, other family members, or even strangers on the news. She worries about them if they are hurt, feels sad when bad situations happen, and thinks of ways we could help someone in need.
She is a rule-keeper...again not as much at home...but at school she keeps everyone in line. She will let everyone else know when they are not following the rules, or procedures. Teachers have greatly appreciated this.
She loves to be outside and could entertain herself outside for hours. It's funny to me, how she can spend so much time outside, by herself, with no toys--just a blanket. And yet, when she has to play indoors with toys, she can't last for more than 30 min. She just loves outside.
She really tries to be a helper. On her own time of course, but she does try to help. Especially when we've had babies in the house. She LOVES to help with the babies. Like I said before, she is #2 in our family, and she has 3 younger siblings. With each one she has loved to help bathe them, change their diapers, wrap them in blankets, hold them, give them kisses, and as she has gotten bigger--get them out of the crib. She has a super soft spot for the little ones. She loves to make them giggle.
Brea gets super super excited for things. In a way, this is a strength and a struggle. Because she gets so excited about things, if by some chance things don't happen how she's expecting, it gets thrown into an emotional outburst. But, she does have a zest, and exuberance for things that is hard to match. She looks forward to every holiday, not matter how 'big', and every event is a HUGE deal to her. Sometimes, I envy her exciteability, and energy.
She has the greatest laugh and a beautiful smile. When she gets going, she can giggle like crazy and it is just contageous. You cannot help but laugh, yourself.
She is a beautiful girl. Her deep brown eyes, and long brown lashes are just gorgeous. I wish I could get her eyes to focus on me long enough to look in them more often, because they are breathtaking. She has a hard time looking into the eyes of others for very long, but when she does, you can see all of her beautiful spirit inside.
Kind of a downfall--but a success nonetheless, she is an excellent eater. She loves all kinds of food and is by FAR, my best eater. My other children are quite picky, but she does very well. I say this is kind of a down-fall, because she likes food so much, she sometimes doesn't know when to stop. She could probably eat every 30 minutes if we let her. She sometimes sneaks snacks out of the pantry--the little stinker!
She is so friendly. She could probably be a friend to anyone. She doesn't get offended, she only gets mad at her brothers and sister. She would play with anyone on the playground...no matter their age, gender or anything. She thinks everyone is a new friend!
This has been such a good post for me, because I have really had a chance to admire her positive attributes, and notice some I've never thought of before. She is a wonderful little girl. There are just those struggles that I wish we could change, but they are turning out to be harder than just, putting her in time-out to change the behavior, or even rewarding for doing things right. We're constantly trying to find ways to help her improve. Some days, are definately better than others. We'll just keep on working, trying, studying, and learning...all with the hopes that she will make small, but significant improvement.
I love my little FIREWORK girl!
I'll start with the struggles, as to end on a positive note. Breanna really struggles with anything that has to do with fine motor skills. She has a hard time holding her pencil correctly, therefore struggles writing. She has about the same legibility as our almost 5 year old. She cannot use scissors very well, especially if she has to follow a line. She cannot tie her shoe, I haven't even tried anything with buttons, so I don't know what she would do there. She cannot get a zipper started on her jacket, but she can pull one up that's already been started. She even has a hard time getting herself dressed. Especially if the clothes are a little too tight.
She will sometimes mix up her words when speaking, either words switched in a sentence, or even sounds within a word switched.
She has an extremely hard time sleeping. When she is tired enough, she'll fall asleep fine, but she is a super light sleeper and any noise will wake her up. What's weird, is that this is only when she is sleeping alone, in her own bed. If she is sleeping on our bedroom floor, or in a bed with her siblings, she doesn't wake up as easily. Or if she does, she doesn't actually "get up."
She cannot run very well, she cannot kick a ball well, throw a ball well, catch a ball, or anything of that nature. All of that is really hard.
She gets super upset when something changes, opposed to what she thought was going to happen. Change of plans are really emotional times for her. She cried today when her balloon popped---like she would never see another balloon in her life. She gets upset when others use/touch her things...even when she's not playing with them. (This I know happens in some of my other kids too, so that's fairly normal. ;) )
At 8 years old, she is not reading well, but making progress.
She gets super scared whenever there's a thunderstorm. She absolutely hates lightning and thunder. She used to hate fireworks, but has learned to be o.k. with them, as long as she has her blanket and mom or dad near by. She also used to run away screaming whenever a jet flew by, but she is doing better with that as well.
Brea also still struggles knowing when to use the restroom. We still have accidents...especially when something fun is going on. She just DOES NOT want to stop what she is doing. She thinks that when she leaves, the fun will be gone when she returns. There are times when we also wonder if she is not understanding the 'urge' to use the potty.
She gets distracted very easily. She will lose focus in a matter of mili-seconds. She will be doing one thing, or talking about one thing, and without warning, she is on to something totally different. She can be having an emotional breakdown, crying fit, and something so small with catch her eye and she will stop--instantly--and start talking about the 'new' thought.
She does not understand 'personal space', or being in one's bubble. She doesn't have the common knowledge to know you shouldn't touch people, or stand so close, or walk around someone's home, when you barely know them. She's VERY curious and will go wherever she feels like, whenever.
There are many things that she is strong at. She has a fantastic memory! Now, the crazy thing is, her short term memory, is not all that great. Or when it comes to things of scholastic value, like anything having to do with math facts or spelling. (In fact, she just barely started spelling her name correctly. She was constantly mixing up the letters!) But, anything that has an emotional connection to her, she can tell you. She remembers things that happened on family trips from years ago, trips to Grandma and Grandpa's house, Holiday memories, etc. Anything that meant something special to her--she remembers every detail. She also will not let us forget important events that are upcoming.
She has a great deal of sympathy. She has always been very compassionate, and caring. Not as much with her siblings (ha ha) but with friends at school and church, neighbors, other family members, or even strangers on the news. She worries about them if they are hurt, feels sad when bad situations happen, and thinks of ways we could help someone in need.
She is a rule-keeper...again not as much at home...but at school she keeps everyone in line. She will let everyone else know when they are not following the rules, or procedures. Teachers have greatly appreciated this.
She loves to be outside and could entertain herself outside for hours. It's funny to me, how she can spend so much time outside, by herself, with no toys--just a blanket. And yet, when she has to play indoors with toys, she can't last for more than 30 min. She just loves outside.
She really tries to be a helper. On her own time of course, but she does try to help. Especially when we've had babies in the house. She LOVES to help with the babies. Like I said before, she is #2 in our family, and she has 3 younger siblings. With each one she has loved to help bathe them, change their diapers, wrap them in blankets, hold them, give them kisses, and as she has gotten bigger--get them out of the crib. She has a super soft spot for the little ones. She loves to make them giggle.
Brea gets super super excited for things. In a way, this is a strength and a struggle. Because she gets so excited about things, if by some chance things don't happen how she's expecting, it gets thrown into an emotional outburst. But, she does have a zest, and exuberance for things that is hard to match. She looks forward to every holiday, not matter how 'big', and every event is a HUGE deal to her. Sometimes, I envy her exciteability, and energy.
She has the greatest laugh and a beautiful smile. When she gets going, she can giggle like crazy and it is just contageous. You cannot help but laugh, yourself.
She is a beautiful girl. Her deep brown eyes, and long brown lashes are just gorgeous. I wish I could get her eyes to focus on me long enough to look in them more often, because they are breathtaking. She has a hard time looking into the eyes of others for very long, but when she does, you can see all of her beautiful spirit inside.
Kind of a downfall--but a success nonetheless, she is an excellent eater. She loves all kinds of food and is by FAR, my best eater. My other children are quite picky, but she does very well. I say this is kind of a down-fall, because she likes food so much, she sometimes doesn't know when to stop. She could probably eat every 30 minutes if we let her. She sometimes sneaks snacks out of the pantry--the little stinker!
She is so friendly. She could probably be a friend to anyone. She doesn't get offended, she only gets mad at her brothers and sister. She would play with anyone on the playground...no matter their age, gender or anything. She thinks everyone is a new friend!
This has been such a good post for me, because I have really had a chance to admire her positive attributes, and notice some I've never thought of before. She is a wonderful little girl. There are just those struggles that I wish we could change, but they are turning out to be harder than just, putting her in time-out to change the behavior, or even rewarding for doing things right. We're constantly trying to find ways to help her improve. Some days, are definately better than others. We'll just keep on working, trying, studying, and learning...all with the hopes that she will make small, but significant improvement.
I love my little FIREWORK girl!
Tuesday, February 4, 2014
Our Story...
9 Years ago I worked with a wonderful woman who has 4 amazing children. When she was first introducing them to me, she said that she called one of them her "sparkle child", because she was her own, unique, individual and just brought "sparkle" everywhere around her. I thought it was super cute...she was special and different within her family and her mom chose to see it as sparkle. Beautiful, not just different.
Not too long after I met this great lady and her family, I gave birth to my 2nd child...a beautiful, brown-haired little girl. We named her Breanna. She was a sweet little thing, that didn't sleep super well, but ate really good. She had a sweet smile and made our hearts melt. She was such a joy in our lives!
As she got bigger we noticed that she would tilt her head to one side, a lot...so we were told to lay her down and stretch it to the other side. She didn't sit up by herself until after 9 months old. She giggled and laughed, but didn't speak much. She didn't walk until 15 months. Everything seemed to be happening just a little "late". She finally did find her words and began using words, but not age appropriately. By age 2- 2 1/2 she wasn't speaking as she should, so our pediatrician recommended getting her ears checked. We took her to the local hospital and had her ears tested, just to find out there was no problem. For that we were grateful. We figured she was just "taking her sweet time" with talking...just as she had done with everything else in her development thus far.
My sister-in-law had many opportunities to see and inter-act with children with different ranges of disabilities. One of which included autism. I went to her home one day to pick up my 2 kiddos, who she was babysitting for the afternoon. She basically asked me if I thought anything about some of my daughter's habits. She recognized some of them as some of the same "habits" as some of the autistic children she knew. Knowing that Breanna was slow in some of her development, she just wondered if we should find out a little bit more. At first I thought, "No way. She's crazy. She doesn't really know what she's talking about." Then I watched my daughter a little more.
Breanna was getting close to the age of 3 years old, and was still not communicating well. She screamed out of frustration, because we could not understand what she was trying to say. She didn't have huge, kicking/yelling all-out fits often, but she did get very upset, and cry. She had a really, really hard time reasoning. We'd try to explain something to her, and she did not want to hear it. She would scream and cry, when things did not happen as she felt they should. She would cry and scream at indoor swimming pools. She was extremely scared of loud noises, running as fast as she could to us when a jet flew over our home, and burying her head into our chests every time she heard or saw a firework. She was not having success in potty training, she was still sucking her thumb, and she was not sleeping well at night. While her big brother was at preschool, she would just lay on the couch with her blanket, or lay down to watch t.v. She was not engaging in imaginary play, or playing with any of her toys. When she got hurt, she would cry and scream, yet almost refuse to be held or consoled. She liked to tippy-toe around the room and had a hard time keeping her focus on things for certain amounts of time. She loved to be outside, especially jumping on the trampoline and swinging in the swing. She would scream in excitement. I finally decided to bring my concerns to my pediatrician again. He suggested sending her to our local school district to have her tested, and see if she could get in to the Head Start program for speech therapy. So, that's what we did.
She was tested for speech, as there was a very apparent need for help there. I voiced my thoughts to the Special Education Specialist that was testing Breanna, about my sister-in-law's suspicions of autism. She asked if we wanted her tested, and I agreed. I was given a number of questionnaires to fill out and Brea was tested for Autism. Her test scores came back 3 points away from being "diagnosed" as Autistic. I didn't think she really had autism, but the test had shown us that she does have Autistic tendencies. So--Autism was out. She was, however, able to receive speech services through their program and she began preschool just after turning 3 years old.
At this same time, I had a friend who's son had been diagnosed with Aspergers. We had talked much about the similarities of our children's behaviors. She told me the psychologist that she went to, that diagnosed her son. She thought that maybe it would be helpful for me to take Breanna to him. So, I decided to go ahead and see what he could tell us. Breanna visited with the Dr., he watched her play, and he talked with me. At the end of the appointment he just looked me and basically said that she definitely did not have Aspergers, but there may be something else that was not in his line of expertise. Possibly something genetic. But, this time--Asperger's was a NO.
She'd had tests and evaluations done, so we figured, she was once again..."taking her sweet time" doing things. Kind of a lazy personality we thought. She continued on in the pre-school and ended up in the school district's Functional Skills preschool, receiving services for speech, and some of her behavioral issues. She was doing well, but we could still see her struggles.
As I mentioned before, Breanna is a really good eater. And because of that she is heavier than our other children...who are quite picky. ;) Once she reached 5 years old she started passing up her older brother in weight. I noticed that her fingers were still pudgy, like a toddler's. I started researching things on-line, looking at everything that had her "symptoms". I found a few genetic disorders and/or syndromes, that I thought it could be and thought maybe we should head in that direction. I discussed things with our pediatrician and we set up an appointment to visit with a geneticist at a local University and had him evaluate her to see if any of my thoughts would be validated. After his evaluations and questions, the doctor --again-- told me, she does have some of the symptoms of these disorders/syndromes, but he would not diagnose her with any of them. The symptoms just weren't severe enough, or there was not enough of them. Shot down...again.
Back with my pediatrician, we then wondered if her weight gain might be caused by a thyroid problem. So, we had her blood drawn for testing. The results came back negative...nothing wrong with her thyroid. After that result, my pediatrician suggested we send Breanna to a Pediatric Developmental Specialist and not worry about her weight. Just focus on diet and exercise.
We went to her first appointment with the Developmental Specialist, and to be honest, she didn't really tell me anything new. There was nothing brought to light that we didn't already know. The best information she gave us, was to keep her working hard in her school's resource program, on her IEP, and ask the school district to re-do some testing. She suggested this, because the first tests were now about 3 years old, as Breanna was now 6 years of age.
Along with her weight, Breanna's speech was still a problem. She could say words, minus a few sounds, but had a hard time putting them into sentences and communicating in that way. People who didn't know her had a hard time understanding her and could not have good conversations with her. She could not write her name. She had learned how to write the letter 'B' pretty well, thanks to her preschool work, but could only trace the rest of the letters when given to her. She had a really hard time holding on to the pencil correctly, and keeping it under control. She couldn't cut paper. It was extremely hard for her to make the scissors work. Anything that had to do with fine motor skills, was a frustrating task for Breanna to accomplish. Even getting dressed was a struggle. She cried and screamed every time we brushed her hair, or got the slightest little scratch. We'd come to discover her senses are on overload. She was still having problems with going to the bathroom, having accidents at school at least 2 times a week. We were absolutely frustrated. She was supposedly only just behind in the things she was supposed to be doing as a 6 year old. Yet, she had so many other things that were going on in her world that we just couldn't piece together. We could not understand why she was acting the way she was, and doing the things she was doing. And as much as we tried, we couldn't help her. Nothing we did helped her. She didn't seem to be improving much with anything that we, or her teachers, were doing. On the positive side, her memory was amazing! Not the short term so much, but her memory of things that our family had done, trips we'd taken, holidays we'd celebrated, visits to grandparents' homes; things that were special to her, she could remember almost every detail. And her teacher told us that she was a fabulous rule-keeper at school, and made sure that her fellow classmates were doing what they were supposed to be doing as well. She was also showing great compassion to those around her, friends and strangers. If someone was sad, she was asking them why. If someone was hurt, she wanted to help them feel better. And don't get me wrong...we have many happy memories of Breanna. She gets the giggles and it is so cute and catchy, she gives fabulous big hugs, and she loves to help take care of her younger siblings.
Through her testing with the school district, the only thing they could feel appropriate to put on her IEP was Developmental Delay. Unfortunately we knew that she could only keep that "categorization" until the age of 8. For some reason, I was not o.k. with Developmental Delay. I wanted answers. I wanted a diagnosis so I knew exactly what was "wrong" with my daughter and so I could have a better idea of how to help her.
My daughter is now 8 years old. She has good days, and some very bad days. We did have her testing re-done last fall, but again...scores were just below what was needed to give her an actual diagnosis. She still does not have a "diagnosis" of anything, and has now been changed on her IEP to Intellectually Delayed. I am still frustrated by this, but I'm beginning to understand that I don't necessarily need a diagnosis, to help her in every way I can. I'm learning that no matter what her behavior, I just need to keep myself under control, so I can help her get under control. I recently listened to a presentation from a specialist that works with children with Autism and ADHD. Something he said hit me hard...He basically said to stop looking for what is "wrong" with our children with disabilities, and look for those things that are RIGHT. I want to keep the positivity about my daughter's situation. I want to recognize what she CAN do, instead of constantly focusing on what she can't.
So, finally I come to the purpose of this blog. My husband and I have felt like we were the only ones who have this kind of a struggle in our life. It felt like no one really understood what we have been going through for the last 5 years or so. Then, he met someone who, after talking with him, said that his family had a very similar situation in their life. Their son had problems and struggles, but has not been diagnosed with anything. I realized that we are NOT alone in our experiences. There might only be a few out there, but others know how we feel. I figured that this blog, may not only be a release of sorts, for me, but also, might help someone else out there know that they are not alone.
My daughter is beautiful...my daughter is amazing...she can be loud, and explosive. She can sometimes "go off" when she's not supposed to, but I know that her beauty and awesomeness is better than just the noise. She doesn't just 'sparkle'...my little girl is just like a firework. (And who doesn't love fireworks!)
Not too long after I met this great lady and her family, I gave birth to my 2nd child...a beautiful, brown-haired little girl. We named her Breanna. She was a sweet little thing, that didn't sleep super well, but ate really good. She had a sweet smile and made our hearts melt. She was such a joy in our lives!
As she got bigger we noticed that she would tilt her head to one side, a lot...so we were told to lay her down and stretch it to the other side. She didn't sit up by herself until after 9 months old. She giggled and laughed, but didn't speak much. She didn't walk until 15 months. Everything seemed to be happening just a little "late". She finally did find her words and began using words, but not age appropriately. By age 2- 2 1/2 she wasn't speaking as she should, so our pediatrician recommended getting her ears checked. We took her to the local hospital and had her ears tested, just to find out there was no problem. For that we were grateful. We figured she was just "taking her sweet time" with talking...just as she had done with everything else in her development thus far.
My sister-in-law had many opportunities to see and inter-act with children with different ranges of disabilities. One of which included autism. I went to her home one day to pick up my 2 kiddos, who she was babysitting for the afternoon. She basically asked me if I thought anything about some of my daughter's habits. She recognized some of them as some of the same "habits" as some of the autistic children she knew. Knowing that Breanna was slow in some of her development, she just wondered if we should find out a little bit more. At first I thought, "No way. She's crazy. She doesn't really know what she's talking about." Then I watched my daughter a little more.
Breanna was getting close to the age of 3 years old, and was still not communicating well. She screamed out of frustration, because we could not understand what she was trying to say. She didn't have huge, kicking/yelling all-out fits often, but she did get very upset, and cry. She had a really, really hard time reasoning. We'd try to explain something to her, and she did not want to hear it. She would scream and cry, when things did not happen as she felt they should. She would cry and scream at indoor swimming pools. She was extremely scared of loud noises, running as fast as she could to us when a jet flew over our home, and burying her head into our chests every time she heard or saw a firework. She was not having success in potty training, she was still sucking her thumb, and she was not sleeping well at night. While her big brother was at preschool, she would just lay on the couch with her blanket, or lay down to watch t.v. She was not engaging in imaginary play, or playing with any of her toys. When she got hurt, she would cry and scream, yet almost refuse to be held or consoled. She liked to tippy-toe around the room and had a hard time keeping her focus on things for certain amounts of time. She loved to be outside, especially jumping on the trampoline and swinging in the swing. She would scream in excitement. I finally decided to bring my concerns to my pediatrician again. He suggested sending her to our local school district to have her tested, and see if she could get in to the Head Start program for speech therapy. So, that's what we did.
She was tested for speech, as there was a very apparent need for help there. I voiced my thoughts to the Special Education Specialist that was testing Breanna, about my sister-in-law's suspicions of autism. She asked if we wanted her tested, and I agreed. I was given a number of questionnaires to fill out and Brea was tested for Autism. Her test scores came back 3 points away from being "diagnosed" as Autistic. I didn't think she really had autism, but the test had shown us that she does have Autistic tendencies. So--Autism was out. She was, however, able to receive speech services through their program and she began preschool just after turning 3 years old.
At this same time, I had a friend who's son had been diagnosed with Aspergers. We had talked much about the similarities of our children's behaviors. She told me the psychologist that she went to, that diagnosed her son. She thought that maybe it would be helpful for me to take Breanna to him. So, I decided to go ahead and see what he could tell us. Breanna visited with the Dr., he watched her play, and he talked with me. At the end of the appointment he just looked me and basically said that she definitely did not have Aspergers, but there may be something else that was not in his line of expertise. Possibly something genetic. But, this time--Asperger's was a NO.
She'd had tests and evaluations done, so we figured, she was once again..."taking her sweet time" doing things. Kind of a lazy personality we thought. She continued on in the pre-school and ended up in the school district's Functional Skills preschool, receiving services for speech, and some of her behavioral issues. She was doing well, but we could still see her struggles.
As I mentioned before, Breanna is a really good eater. And because of that she is heavier than our other children...who are quite picky. ;) Once she reached 5 years old she started passing up her older brother in weight. I noticed that her fingers were still pudgy, like a toddler's. I started researching things on-line, looking at everything that had her "symptoms". I found a few genetic disorders and/or syndromes, that I thought it could be and thought maybe we should head in that direction. I discussed things with our pediatrician and we set up an appointment to visit with a geneticist at a local University and had him evaluate her to see if any of my thoughts would be validated. After his evaluations and questions, the doctor --again-- told me, she does have some of the symptoms of these disorders/syndromes, but he would not diagnose her with any of them. The symptoms just weren't severe enough, or there was not enough of them. Shot down...again.
Back with my pediatrician, we then wondered if her weight gain might be caused by a thyroid problem. So, we had her blood drawn for testing. The results came back negative...nothing wrong with her thyroid. After that result, my pediatrician suggested we send Breanna to a Pediatric Developmental Specialist and not worry about her weight. Just focus on diet and exercise.
We went to her first appointment with the Developmental Specialist, and to be honest, she didn't really tell me anything new. There was nothing brought to light that we didn't already know. The best information she gave us, was to keep her working hard in her school's resource program, on her IEP, and ask the school district to re-do some testing. She suggested this, because the first tests were now about 3 years old, as Breanna was now 6 years of age.
Along with her weight, Breanna's speech was still a problem. She could say words, minus a few sounds, but had a hard time putting them into sentences and communicating in that way. People who didn't know her had a hard time understanding her and could not have good conversations with her. She could not write her name. She had learned how to write the letter 'B' pretty well, thanks to her preschool work, but could only trace the rest of the letters when given to her. She had a really hard time holding on to the pencil correctly, and keeping it under control. She couldn't cut paper. It was extremely hard for her to make the scissors work. Anything that had to do with fine motor skills, was a frustrating task for Breanna to accomplish. Even getting dressed was a struggle. She cried and screamed every time we brushed her hair, or got the slightest little scratch. We'd come to discover her senses are on overload. She was still having problems with going to the bathroom, having accidents at school at least 2 times a week. We were absolutely frustrated. She was supposedly only just behind in the things she was supposed to be doing as a 6 year old. Yet, she had so many other things that were going on in her world that we just couldn't piece together. We could not understand why she was acting the way she was, and doing the things she was doing. And as much as we tried, we couldn't help her. Nothing we did helped her. She didn't seem to be improving much with anything that we, or her teachers, were doing. On the positive side, her memory was amazing! Not the short term so much, but her memory of things that our family had done, trips we'd taken, holidays we'd celebrated, visits to grandparents' homes; things that were special to her, she could remember almost every detail. And her teacher told us that she was a fabulous rule-keeper at school, and made sure that her fellow classmates were doing what they were supposed to be doing as well. She was also showing great compassion to those around her, friends and strangers. If someone was sad, she was asking them why. If someone was hurt, she wanted to help them feel better. And don't get me wrong...we have many happy memories of Breanna. She gets the giggles and it is so cute and catchy, she gives fabulous big hugs, and she loves to help take care of her younger siblings.
Through her testing with the school district, the only thing they could feel appropriate to put on her IEP was Developmental Delay. Unfortunately we knew that she could only keep that "categorization" until the age of 8. For some reason, I was not o.k. with Developmental Delay. I wanted answers. I wanted a diagnosis so I knew exactly what was "wrong" with my daughter and so I could have a better idea of how to help her.
My daughter is now 8 years old. She has good days, and some very bad days. We did have her testing re-done last fall, but again...scores were just below what was needed to give her an actual diagnosis. She still does not have a "diagnosis" of anything, and has now been changed on her IEP to Intellectually Delayed. I am still frustrated by this, but I'm beginning to understand that I don't necessarily need a diagnosis, to help her in every way I can. I'm learning that no matter what her behavior, I just need to keep myself under control, so I can help her get under control. I recently listened to a presentation from a specialist that works with children with Autism and ADHD. Something he said hit me hard...He basically said to stop looking for what is "wrong" with our children with disabilities, and look for those things that are RIGHT. I want to keep the positivity about my daughter's situation. I want to recognize what she CAN do, instead of constantly focusing on what she can't.
So, finally I come to the purpose of this blog. My husband and I have felt like we were the only ones who have this kind of a struggle in our life. It felt like no one really understood what we have been going through for the last 5 years or so. Then, he met someone who, after talking with him, said that his family had a very similar situation in their life. Their son had problems and struggles, but has not been diagnosed with anything. I realized that we are NOT alone in our experiences. There might only be a few out there, but others know how we feel. I figured that this blog, may not only be a release of sorts, for me, but also, might help someone else out there know that they are not alone.
My daughter is beautiful...my daughter is amazing...she can be loud, and explosive. She can sometimes "go off" when she's not supposed to, but I know that her beauty and awesomeness is better than just the noise. She doesn't just 'sparkle'...my little girl is just like a firework. (And who doesn't love fireworks!)
Subscribe to:
Comments (Atom)