A Mother's Quest to Help her Daughter... and to be Completely Honest Along the Way
Thursday, July 12, 2012
My daughter's perspective
I can often tell when my daughter has some sensory stuff going on, and is craving more sensory input. This afternoon she started running, jumping, crashing, just moving her body all around, fiercely... she was trying to sit at the table and eat and just kept jumping up in her chair and kicking her legs, etc. I asked her "What does your body feel like right now?" She said "It feels uncomfortable. It just feels really uncomfortable." It has been described to me by some as feeling like "restless body syndrome," if you have any experience with Restless Leg Syndrome. I found a really interesting article written by a young woman with PDD-NOS, who helps us to understand self-regulation, and what it feels like to struggle with it. Read it here. So incredibly interesting, and just gives me a little peek inside of what my daughter may be feeling sometimes.
Today I feel...
a myriad of emotions. That's a pretty normal day for us, where this mommy (and really, this whole family) feels a huge range of emotions. First, I have to say I am PROUD. So proud of my big girl for finally accomplishing a big milestone she's been so anxious to accomplish!! She is completely out of nite-nite diapers!!!! She's been daytime potty-trained for 2 years now, but nights were soooo hard for her. She kept wanting to try, especially within the last few months, but just could not wake up with a dry diaper. In fact, she would wake up pretty wet. Then completely out of the blue the other night, she woke up at 4 a.m. calling for me, which is a typical occurrence, but when I went in- she was ON THE POTTY and HER PULL-UP WAS DRY!!! She peed, went back to sleep, and when she awoke, HER PULL-UP WAS DRY AGAIN!!! She was just so proud, and I promised her if she had a second night of the same thing, that she could try panties the third night! So... success again the second night! Third night... panties. I was a little nervous, but SHE DID IT!! :) Last night was the second night in panties, fourth night overall of waking up dry!!!! YAY for my BIG GIRL!!! She wanted this so badly, as she kept telling me how uncomfortable her pull-up was to sleep in, for one... for two, she wanted so much to be like her cousin, (who is the same age and she is super-close with) who was able to be trained during nights and days at the same time.
I also feel quite BLESSED. Blessed to have two sweet, smart, silly, beautiful, loving children. Is there anything like hearing your four year-old say, "I just love you so much, Mommy"?? Or hearing your two-year old, still learning to talk, say "Mommy home. Daddy home. Sissy home. Happy." Just so, so sweet. I think my favorite part of watching a child grow is seeing and hearing the language development.
Then... the flip side. :) Your two year-old learning to talk... and really mastering the word "NO!" And a very defiant "NO!" with a foot stomp. Your two year-old picking up his sister's bad habits (ugh)... this is an especially difficult one. He's two... so he's not really "getting" time-outs or any attempts at discipline, so I'm struggling with how to handle this situation. And let's face it, his sister obviously has some very bad habits. So... this Mommy is having a pretty hard time right now. The words would be FRUSTRATED and OVERWHELMED. Some days it truly feels like I'm barely keeping my head above water. I've been in survival mode for a long time now... probably since my son was born. Many days, I am just doing what I can to get us through the day. It's sad, but it's the truth. Many days, I feel more like a referee or a zookeeper than I do a mother. I know this is just a part of being a stay-at-home mommy to two young children, so I try to keep them busy the best I can. But the fact of the matter is, it is pretty hard for either of them to really do a whole lot independently while I try to get the everyday stuff done. For example, my daughter was busy coloring, which she enjoys, but within minutes had completely covered her body in markers. You would expect this from a two year-old, but unfortunately my four year-old has impulse-control issues that I am told are "off the charts..." and things like this happen frequently. So it's hard to not watch her every minute to keep things like this from happening. To say that everything else in life has taken a backseat to our children... our house, our marriage, our friends, our own interests and activities... would be the understatement of the year. But it is what it is, and they have to come first right now. I know (hope) it all will pass, and we will get through this tough spot in our lives, and we will live a new kind of normal that we will all adjust to... knowing that light is at the end of the tunnel really helps.
I'm also feeling GUILTY. For alot of reasons. Which is a whole other post that I will eventually finish. But I guess I wouldn't be a mommy if I didn't feel guilty, right??
I also want to say that I feel SUPPORTED. You are reading this because I shared it with you. And I shared it with you for one, more, or all of these reasons: You have been a good friend to me. You have shown love and compassion to my daughter. You have lifted me up when I needed it. You are important to me. So... thank you. :)
I also feel quite BLESSED. Blessed to have two sweet, smart, silly, beautiful, loving children. Is there anything like hearing your four year-old say, "I just love you so much, Mommy"?? Or hearing your two-year old, still learning to talk, say "Mommy home. Daddy home. Sissy home. Happy." Just so, so sweet. I think my favorite part of watching a child grow is seeing and hearing the language development.
Then... the flip side. :) Your two year-old learning to talk... and really mastering the word "NO!" And a very defiant "NO!" with a foot stomp. Your two year-old picking up his sister's bad habits (ugh)... this is an especially difficult one. He's two... so he's not really "getting" time-outs or any attempts at discipline, so I'm struggling with how to handle this situation. And let's face it, his sister obviously has some very bad habits. So... this Mommy is having a pretty hard time right now. The words would be FRUSTRATED and OVERWHELMED. Some days it truly feels like I'm barely keeping my head above water. I've been in survival mode for a long time now... probably since my son was born. Many days, I am just doing what I can to get us through the day. It's sad, but it's the truth. Many days, I feel more like a referee or a zookeeper than I do a mother. I know this is just a part of being a stay-at-home mommy to two young children, so I try to keep them busy the best I can. But the fact of the matter is, it is pretty hard for either of them to really do a whole lot independently while I try to get the everyday stuff done. For example, my daughter was busy coloring, which she enjoys, but within minutes had completely covered her body in markers. You would expect this from a two year-old, but unfortunately my four year-old has impulse-control issues that I am told are "off the charts..." and things like this happen frequently. So it's hard to not watch her every minute to keep things like this from happening. To say that everything else in life has taken a backseat to our children... our house, our marriage, our friends, our own interests and activities... would be the understatement of the year. But it is what it is, and they have to come first right now. I know (hope) it all will pass, and we will get through this tough spot in our lives, and we will live a new kind of normal that we will all adjust to... knowing that light is at the end of the tunnel really helps.
I'm also feeling GUILTY. For alot of reasons. Which is a whole other post that I will eventually finish. But I guess I wouldn't be a mommy if I didn't feel guilty, right??
I also want to say that I feel SUPPORTED. You are reading this because I shared it with you. And I shared it with you for one, more, or all of these reasons: You have been a good friend to me. You have shown love and compassion to my daughter. You have lifted me up when I needed it. You are important to me. So... thank you. :)
Monday, July 9, 2012
This is more than just bad behavior. This is more than just a child acting like a little brat. This is more than parents who don't discipline correctly or give in too much. This is more than just "a kid being a kid." A mother's instincts- from the age of 15 months- are rarely wrong. Her teachers were not wrong. The pediatrician, psychologists, therapist, (who has seen her weekly for 8 months now) and other mental health professionals... are not wrong. I wish it were as simple as some may think. Put your foot down. Don't give in. Show her who's boss. Be consistent. You're the parent. So easy to say when you don't live with it 24/7. So easy to do that with your kid when he/she may need discipline or parental intervention a few times a day- even once or twice an hour. So easy to see me and what I do/don't do and pass judgment.
I think what's hard for people to understand... even for me to understand sometimes, is that my daughter can have moments... minutes, hours, sometimes (although rarely) even whole days of normalcy... total and complete typical child behavior. She has the ability to focus, even hyper-focus, on things of great interest to her. It is at these times that the thought crosses one's mind... maybe nothing really is going on. But trust me... there is.
There are things that people say to parents that just don't help- they may even hurt. Please don't say: "I really don't think there's anything wrong," or "Maybe they were wrong," or "She can't have -insert diagnosis here- because -insert reason here." You never know how long a parent may have been dealing with this... how long it may have taken them to come to grips with the fact that something more might be going on... how long it may have taken them to pick up the phone and make that appt. for an evaluation... and how long it may have taken them to finally accept the answers they received, not to mention how long it may have taken them to actually share that with you. Please don't give parenting advice if you don't have a child with similar special needs, or if you don't work as a professional in dealing with children who have similar special needs. It doesn't help, and in fact can make me feel quite inadequate. I promise you, I am doing everything I can. I have already enlisted the help of several professionals to help me figure out what to do. It's slow-going, but it's a start. And what works for one child, your neuro-typical child, most likely will not work for my child. What you can and should say to someone who is parenting a child with special needs, and you want to help and be supportive, is: YOU ARE DOING A GREAT JOB. If you know that parent is doing everything out of love, and what they truly feel is best, even if it's not what you would do.... tell them they are doing GREAT. Sometimes that's all someone needs to hear to give them that little extra boost to get them through the day. :)
I think what's hard for people to understand... even for me to understand sometimes, is that my daughter can have moments... minutes, hours, sometimes (although rarely) even whole days of normalcy... total and complete typical child behavior. She has the ability to focus, even hyper-focus, on things of great interest to her. It is at these times that the thought crosses one's mind... maybe nothing really is going on. But trust me... there is.
There are things that people say to parents that just don't help- they may even hurt. Please don't say: "I really don't think there's anything wrong," or "Maybe they were wrong," or "She can't have -insert diagnosis here- because -insert reason here." You never know how long a parent may have been dealing with this... how long it may have taken them to come to grips with the fact that something more might be going on... how long it may have taken them to pick up the phone and make that appt. for an evaluation... and how long it may have taken them to finally accept the answers they received, not to mention how long it may have taken them to actually share that with you. Please don't give parenting advice if you don't have a child with similar special needs, or if you don't work as a professional in dealing with children who have similar special needs. It doesn't help, and in fact can make me feel quite inadequate. I promise you, I am doing everything I can. I have already enlisted the help of several professionals to help me figure out what to do. It's slow-going, but it's a start. And what works for one child, your neuro-typical child, most likely will not work for my child. What you can and should say to someone who is parenting a child with special needs, and you want to help and be supportive, is: YOU ARE DOING A GREAT JOB. If you know that parent is doing everything out of love, and what they truly feel is best, even if it's not what you would do.... tell them they are doing GREAT. Sometimes that's all someone needs to hear to give them that little extra boost to get them through the day. :)
Wednesday, July 4, 2012
WOW. That's all I can say.
Have you ever read or heard something that you just felt in your gut? That just shook you to your core? That just screamed at you- "YES! YES! THIS is what I've been searching for!"? (Please, please God, please let this be what I've been searching for). What I have just read REALLY makes me want to call Dr. Bock and get on his many months to a year-long waiting list, and make the drive to Rhinebeck, NY to see him. Hopefully the dr. that we are seeing, located east of our closest city, will be doing the same things... and if not, she seemed open to following his protocol. Apparently, they are actually friends, so I'm going to assume she could also consult with him.
I just read about a little girl named Alisa who sounded so much like my daughter. Not 100% exactly, but the closest I've come in my search for someone, anyone, who looked like her. Interestingly, her diagnosis was ADHD- both inattentive subtype and hyperactive-impulsive subtype- with bipolar features. She had rapid cycling mood swings. Signs of oppositional defiance disorder. Attendant colitis. Allergic rhinitis. Hypoglycemia. Are you freaking kidding me? My daughter is not as severe, but again, the closest I've come. And my daughter has all of these symptoms. Hypoglycemia has not been confirmed, but I suspect it.
So I'm reading about what actually happens in my daughter's brain, and I am both fascinated and sick. I am reading about different areas of the brain and what happens with them- way too lengthy to get into here. To sum it up, here are two paragraphs from page 98 of Dr. Bock's book, Healing the New Childhood Epidemics- Autism, ADHD, Asthma, and Allergies: The Groundbreaking New Program for the 4-A Disorders: "The net effect of all of these classic contributing factors to ADHD is a brain that just can't take good care of itself. In particular, it can't have a good talk with itself, in the same way that you might have a talk with yourself when you're trying to make a difficult decision. The higher brain simply can't engage in a smart dialogue with the lower brain. The lower brain hogs the conversation and thoughts and feelings get bogged in a mire of fear, anger, and selfish desire. Negativity builds upon negativity, until bad behavior finally bursts forth like an uncontrollable fire." "When this unfortunate process occurs, people lose what neurologists call executive function. Losing executive function means that the frontal lobes aren't in charge anymore. The Boss is out of the office. Chaos reigns, and the lower instincts prevail. When people lose strong executive function, they can have the best of intentions, but just don't have the biological means to harness those intentions, and do the right thing." The psychology major in me is fascinated. The mother in me is sick that this is happening. On page 96- "It's been said that 70% of the brain is there to inhibit the other 30%. In some ADHD kids, however, this ratio seems to get reversed, and it's very difficult for these kids to control themselves. A person with this neurological makeup can go through his or her life feeling as overwhelmed by temptation as the proverbial kid in a candy store. This is part of the reason why so many kids with ADHD grow up to become adults who overindulge in alcohol, drugs, food, and other avenues of immediate gratification." You can see why I have fears for the future, and you can see why when told about these possibilities by the pediatrician, that I said- yes, I will try anything! Even stimulant meds, if that's what my daughter needs. Well, 30% of children with ADHD are not helped by stimulants, and my daughter is one of them. And let me tell you, if the meds had worked for her, I can guarantee you we would be on them and stay on them. I'm sure at some point along the line I would have tried to get her off of them and then perhaps investigated biomed, but that didn't happen. I don't know for certain what the statistics are for biomedical intervention to help my daughter, but let's say it's even 30-50%. Worth a try, in my opinion. Worth every penny it's going to cost. Worth every fit she's going to take when she can't have a certain food or treat (I say that now- LOL). Worth EVERYTHING if this is her answer. I read a blog the other day about a mother who tried biomed for her son with ADHD and it really didn't do anything. So I know that can happen. But I also know there are many success stories, and I'm praying that we're one of them!
I just read about a little girl named Alisa who sounded so much like my daughter. Not 100% exactly, but the closest I've come in my search for someone, anyone, who looked like her. Interestingly, her diagnosis was ADHD- both inattentive subtype and hyperactive-impulsive subtype- with bipolar features. She had rapid cycling mood swings. Signs of oppositional defiance disorder. Attendant colitis. Allergic rhinitis. Hypoglycemia. Are you freaking kidding me? My daughter is not as severe, but again, the closest I've come. And my daughter has all of these symptoms. Hypoglycemia has not been confirmed, but I suspect it.
So I'm reading about what actually happens in my daughter's brain, and I am both fascinated and sick. I am reading about different areas of the brain and what happens with them- way too lengthy to get into here. To sum it up, here are two paragraphs from page 98 of Dr. Bock's book, Healing the New Childhood Epidemics- Autism, ADHD, Asthma, and Allergies: The Groundbreaking New Program for the 4-A Disorders: "The net effect of all of these classic contributing factors to ADHD is a brain that just can't take good care of itself. In particular, it can't have a good talk with itself, in the same way that you might have a talk with yourself when you're trying to make a difficult decision. The higher brain simply can't engage in a smart dialogue with the lower brain. The lower brain hogs the conversation and thoughts and feelings get bogged in a mire of fear, anger, and selfish desire. Negativity builds upon negativity, until bad behavior finally bursts forth like an uncontrollable fire." "When this unfortunate process occurs, people lose what neurologists call executive function. Losing executive function means that the frontal lobes aren't in charge anymore. The Boss is out of the office. Chaos reigns, and the lower instincts prevail. When people lose strong executive function, they can have the best of intentions, but just don't have the biological means to harness those intentions, and do the right thing." The psychology major in me is fascinated. The mother in me is sick that this is happening. On page 96- "It's been said that 70% of the brain is there to inhibit the other 30%. In some ADHD kids, however, this ratio seems to get reversed, and it's very difficult for these kids to control themselves. A person with this neurological makeup can go through his or her life feeling as overwhelmed by temptation as the proverbial kid in a candy store. This is part of the reason why so many kids with ADHD grow up to become adults who overindulge in alcohol, drugs, food, and other avenues of immediate gratification." You can see why I have fears for the future, and you can see why when told about these possibilities by the pediatrician, that I said- yes, I will try anything! Even stimulant meds, if that's what my daughter needs. Well, 30% of children with ADHD are not helped by stimulants, and my daughter is one of them. And let me tell you, if the meds had worked for her, I can guarantee you we would be on them and stay on them. I'm sure at some point along the line I would have tried to get her off of them and then perhaps investigated biomed, but that didn't happen. I don't know for certain what the statistics are for biomedical intervention to help my daughter, but let's say it's even 30-50%. Worth a try, in my opinion. Worth every penny it's going to cost. Worth every fit she's going to take when she can't have a certain food or treat (I say that now- LOL). Worth EVERYTHING if this is her answer. I read a blog the other day about a mother who tried biomed for her son with ADHD and it really didn't do anything. So I know that can happen. But I also know there are many success stories, and I'm praying that we're one of them!
Tuesday, July 3, 2012
Happiness and a glimpse of relief
We have had two pretty great days. Two days where we did some "normal" family things... and things actually went pretty well, all things considered. I'm not sure if you realize how huge this is. It started on Sunday with spending the day at my parents' house, swimming and playing. No huge meltdowns, no big fights, nothing too crazy happened. Just a nice, fun day spent with the family. Was it perfect? Certainly not. But an improvement, for sure. Transitions are probably one of the toughest things for my daughter, so leaving is never easy. Of course she will do anything to stay, (and often anything to be defiant as well) so the obvious choice for her was to jump in the pool naked after Mommy told her pool time was over. I choose my battles, I do... and let me tell you, I have to, otherwise ALL I would do is discipline this child and never enjoy her. It wasn't THAT big of a deal, although she did, in fact, not listen to me. But she had such a good day up to that point... whatever, I just dried her off, got her dressed, and we left... no real harm done.
Yesterday we went with my whole family to an amusement and water park. Daddy had to work, and I was very hesitant to take both kiddos on my own, so I made sure that my parents were willing to help me- someone always being designated to one of my kids. It can be, at times, like I actually have two 2 year-old boys, if you know what I mean. Well, the whole family stepped in and grandparents, aunts, and uncles helped me tremendously!! My daughter loves her cousins SO much, and wanted to be with them every second, so I thank God that everyone helped and was willing to take responsibility for my daughter when I had to stay back with my son, etc. I really am so blessed with amazing families on both sides. Again, the day wasn't without... situations, but it really went so well. Even 6 months ago, I don't know if she would have walked hand-in-hand... not darted and run away from us constantly... (she only did twice) not melted down at least 5 times (she only really had 1 or 2 small ones)... or let me leave her side (she did!). I'm learning, slowly but surely, what her triggers are, how to see them coming and how to avoid them as much as possible, and within reason. Like I said, some of that is picking and choosing my battles. There are some things I just HAVE to put my foot down about, and there are some things that are small, and just aren't worth it, ESPECIALLY in a place like we were yesterday. The meltdown can be so severe, and can last for SO long, (it has up to an hour- and I mean an hour at FULL-BLOWN meltdown... and remember, she is 4 1/2 years old) that I just can't put my foot down on everything if ANYONE is to have any fun. Some may call this "letting her get away with things," when the behavioral specialists we have gotten to help us call it "avoiding her triggers,"- again, within reason. I have mixed feelings about some of this, as I want my daughter to learn that you JUST LISTEN TO YOUR PARENTS, you know? This is the way the world works. Mommy and Daddy (and grandparents, aunts, and uncles) really do know best, we're trying to keep you safe and teach you right from wrong. But one of my daughter's many team members said something to me the other day that helped me to understand. She said, "I'm sorry, but your daughter IS different. You have to do things differently. And some people may not understand. But that's ok. It HAS to be ok with you, or you're never going to get anywhere. The sooner you realize and accept this, the better off you and your daughter are going to be." She explained the tantrum behavior and what it turns into for my daughter- how it will turn into a full-blown tantrum that she can't come out of, because she has an actual physical reaction sometimes, depending upon several different things- perhaps her blood sugar levels, for one thing (which is one trigger we are picking up on as a possibility). Her physical reactions actually trigger anxiety and then panic and perseveration... no one knows until they see this happen.
We are learning this is going to take work. We are learning that she simply DOES NOT HAVE, or is SEVERELY LACKING, the coping skills she SHOULD have developed naturally. It's just something that happens, and is all a part of her different diagnoses put together. We are learning that this is a marathon, not a sprint, when we obviously want it to be a sprint. But it just doesn't work that way. It's going to be little steps at a time, with alot of people involved, and all of them on the same page. The goals on her treatment plan I received from her BSC (Master's level behavioral specialist) include:
Yesterday we went with my whole family to an amusement and water park. Daddy had to work, and I was very hesitant to take both kiddos on my own, so I made sure that my parents were willing to help me- someone always being designated to one of my kids. It can be, at times, like I actually have two 2 year-old boys, if you know what I mean. Well, the whole family stepped in and grandparents, aunts, and uncles helped me tremendously!! My daughter loves her cousins SO much, and wanted to be with them every second, so I thank God that everyone helped and was willing to take responsibility for my daughter when I had to stay back with my son, etc. I really am so blessed with amazing families on both sides. Again, the day wasn't without... situations, but it really went so well. Even 6 months ago, I don't know if she would have walked hand-in-hand... not darted and run away from us constantly... (she only did twice) not melted down at least 5 times (she only really had 1 or 2 small ones)... or let me leave her side (she did!). I'm learning, slowly but surely, what her triggers are, how to see them coming and how to avoid them as much as possible, and within reason. Like I said, some of that is picking and choosing my battles. There are some things I just HAVE to put my foot down about, and there are some things that are small, and just aren't worth it, ESPECIALLY in a place like we were yesterday. The meltdown can be so severe, and can last for SO long, (it has up to an hour- and I mean an hour at FULL-BLOWN meltdown... and remember, she is 4 1/2 years old) that I just can't put my foot down on everything if ANYONE is to have any fun. Some may call this "letting her get away with things," when the behavioral specialists we have gotten to help us call it "avoiding her triggers,"- again, within reason. I have mixed feelings about some of this, as I want my daughter to learn that you JUST LISTEN TO YOUR PARENTS, you know? This is the way the world works. Mommy and Daddy (and grandparents, aunts, and uncles) really do know best, we're trying to keep you safe and teach you right from wrong. But one of my daughter's many team members said something to me the other day that helped me to understand. She said, "I'm sorry, but your daughter IS different. You have to do things differently. And some people may not understand. But that's ok. It HAS to be ok with you, or you're never going to get anywhere. The sooner you realize and accept this, the better off you and your daughter are going to be." She explained the tantrum behavior and what it turns into for my daughter- how it will turn into a full-blown tantrum that she can't come out of, because she has an actual physical reaction sometimes, depending upon several different things- perhaps her blood sugar levels, for one thing (which is one trigger we are picking up on as a possibility). Her physical reactions actually trigger anxiety and then panic and perseveration... no one knows until they see this happen.
We are learning this is going to take work. We are learning that she simply DOES NOT HAVE, or is SEVERELY LACKING, the coping skills she SHOULD have developed naturally. It's just something that happens, and is all a part of her different diagnoses put together. We are learning that this is a marathon, not a sprint, when we obviously want it to be a sprint. But it just doesn't work that way. It's going to be little steps at a time, with alot of people involved, and all of them on the same page. The goals on her treatment plan I received from her BSC (Master's level behavioral specialist) include:
Will develop
compliance skills and will decrease defiant and aggressive outbursts.
Measurable Objectives
·
will display a decrease in
aggressive behaviors(ie. Hitting, screaming, throwing things) to around 20% of
the time and measured using frequency and duration recording and reports from
family members and teacher
·
will display a reduction of
tantrum behaviors(i.e. crying, whining, etc) goal to around 20% of the time
using frequency and duration recording and reports from family members and
teachers
·
will follow through with a request within 0-2 prompts about 80% of the
time.
·
will eliminate her manipulative
behavior in order to get her wants and needs met.
·
will reduce her impulsive
behaviors to around 20% of the opportunity.
Will develop age appropriate social skills and will expand play, reducing
behaviors 80% of the time.
Measurable Objectives
· will engage in age appropriate
interactions 80% of the time without displays of aggression
·
When interacting with her peers she
will not dominate play 80% of the time.
·
She will interact with her brother in a
gentle manner 100% of the time
Will increase focus and
awareness of her environment with 80% accuracy.
Measurable Objectives
·
When in the community, will
respond to adult instructions and safety command (e.g. STOP) within 1 prompt
100% of the time
·
When in public or unfamiliar
setting, will stay with in arm’s length of familiar adult with 100%
accuracy.
·
will increase attention to task
to 10 minutes 80% of the time
The treatment plan includes antecedent intervention strategies, replacement intervention strategies, and consequence intervention strategies. It is all VERY overwhelming to think about, and I know it's going to be even more overwhelming to implement. I think one strategy that's going to be hard for us is "planned ignoring." I already do it sometimes- but essentially any "attention-seeking" behavior should be ignored. Holy smokes- that's ALOT of behaviors for our daughter. How in the world are we going to do that? And how in the world am I going to get over the fact that I'm afraid people will think I'm not doing my job, when in fact it is a RECOMMENDED INTERVENTION STRATEGY for my daughter? I wish I didn't care what people think. I need to work on this.
I think one of the hardest things for us is dealing with her off-the-charts impulsivity. She can be SO impulsive sometimes. We have been told, by her therapist and by a psychologist, that she seems to be missing the "stop and think" piece of what most people have, which is "stop, think, do." This can be anything from dumping a glass of water or grabbing things off of counters to running away in a parking lot to see something she wants to see, or even when she will yell and scream mean things sometimes. It can be so frustrating, but we are doing our best to understand that there are some things SHE JUST CAN'T HELP. Something is not working correctly in her little brain to tell her to "stop and think." It angers my husband, and yes it angers me, too. Now, this is not everything, and that's where it gets even tougher, as there are times that she is just being manipulative and does know what she's doing, and this is one of the biggest challenges... trying to tell one from the other.
Either way, I'm really very proud of how she handled herself the last two days. It makes me feel like maybe we are making progress, even if it's little by little... but this felt really big. :)
I think one of the hardest things for us is dealing with her off-the-charts impulsivity. She can be SO impulsive sometimes. We have been told, by her therapist and by a psychologist, that she seems to be missing the "stop and think" piece of what most people have, which is "stop, think, do." This can be anything from dumping a glass of water or grabbing things off of counters to running away in a parking lot to see something she wants to see, or even when she will yell and scream mean things sometimes. It can be so frustrating, but we are doing our best to understand that there are some things SHE JUST CAN'T HELP. Something is not working correctly in her little brain to tell her to "stop and think." It angers my husband, and yes it angers me, too. Now, this is not everything, and that's where it gets even tougher, as there are times that she is just being manipulative and does know what she's doing, and this is one of the biggest challenges... trying to tell one from the other.
Either way, I'm really very proud of how she handled herself the last two days. It makes me feel like maybe we are making progress, even if it's little by little... but this felt really big. :)
Friday, June 29, 2012
Here we go...
Holy freakin' hell, my head is spinning. We had our first appt. yesterday with the DAN/biomed/homeopath/Functional Medicine dr. I'm not sure how I feel, really. First things first, she wants us to start the dreaded GFCF diet, damn it (gluten-free, casein-free... essentially no wheat and gluten from some other grains, and no dairy). Not that I didn't know this was coming... I did. It's usually a prerequisite. I was HOPING that maybe she would take a look at how the food sensitivities testing came back and go from there, but... she wants us to start by eliminating gluten, 2 weeks later dairy, and 2 weeks after that soy. Shoot me. I know I HAVE to do this. I HAVE to give ALL of this 100%. In my mind, I am committing to 6 months of giving biomed my ALL. I need to do this for my daughter. It's just gonna suck. Well, not if it works! But my fears are... ha! Where to start with that? I would say first and foremost, my daughter's reactions to this elimination diet. Though I am worried about home, it will be easier at home, because we will do it as a family, and it just won't be available. What I am worried about is school, summer camp, parties, etc. I learned last week that an anxious child does NOT like to be different. I had no idea that was part of the reason for her obsession with being like certain other children. To say she is going to lose her shit when she can't have the same snack as the other children, or the same cupcake at a party, or eat the same food at Gaga's house that her cousin is having... well, that's an understatement. Lord help us all. But I don't see any way around this. My next fear is getting her to take the supplements that she needs to take. My child is not an easy-going, go with the flow, do whatever Mommy says kind of kid, to say the least. And I guess lastly, I am concerned with spending this BOAT-LOAD of cash on all of this stuff (we dropped $400 yesterday on an initial visit and 2 supplements) and it not working. Again, no way around it in my mind. It's worth a try, right? It's my daughter's LIFE we're talking about. I HAVE to try... for her. I owe it to her to do EVERYTHING I can.
The dr. was nice enough... very sweet with my daughter. I sat and talked with her the first hour, and my husband brought our daughter the last 15 min. I will say that the dr. seemed VERY sure of herself. Not arrogant, necessarily, but just really very sure of herself. Which is good... but I guess I just don't want any false hope. From all the research I have done, it seems roughly 20-30% of children are actually helped by this kind of treatment. My daughter's counselor feels it is probably closer to 50%, for various reasons, mostly because people have a hard time following the VERY strict diet, (i.e. any little dietary infraction makes a BIG difference) and that often people don't give it enough time to work. So I have to keep those things in mind.
The tests the dr. will be running to start with are: a complete digestive stool analysis, urine caso morphine through Great Plains, hair analysis, and this blood work to start: Candio CRP, CBC w diff, CMP, Lipid panel (fasting), Magnesium (RBC), TSH, T3free, T4, Urine R & M, C & S, Zinc (RBC), 25 (OH) D. 2 weeks later, she will do a Triad from Meta Metrix or Great Plains. I'm not sure what a Triad is or what it is testing for... I do have some follow-up questions for sure that I need to call about later today. We already are doing EFA (essential fatty acids- she is taking fish oil) supplements, but she wants us to take 4 a day now. We are also already doing digestive enzymes and probiotics. We just have to stop these 5 days before the Nutri Eval test... though I'm not sure what/when that test it.
I picked up Dr. Kenneth Bock's book and just started reading it. Hopefully it will help me to understand all of this stuff. It is one that keeps being recommended by various people. The dr. referenced it a few times yesterday, and seems to be interested in following the same protocol for the most part.
Say a little prayer for us as we begin. I'm scared... nervous... anxious... and yes, even a little hopeful. :)
I was feeling pretty pissed off yesterday. Pissed that we are the ones that have to do all this stuff. I mean... 99% of all of the people we know don't have to do any of this shit and their kids are just fine, you know? It just freakin' pisses me off sometimes. But it is what it is. We have 2 beautiful children who need us to do everything we can for them to have great lives, so we are trying to do just that. It just annoys me sometimes. Again, refer to my first blog post to hear how I feel about being blessed, and knowing how good I have it, etc. I get it. Just venting. After all, this blog IS called HOW THIS MOMMY REALLY FEELS. That is how I really feel. And I do have a very dear friend whose little boy is literally allergic to EVERYTHING. He simply cannot eat. I think his two safe foods are baby food applesauce and Dum Dum lollipops. He has to be fed through a tube in his stomach. So wah wah me, I'm gonna whine and complain because I have to remove a few things from my daughter's diet? I think we'll survive. It's just gonna suck until we get used to it. Time to put on the big girl panties and get this done!!!!
The dr. was nice enough... very sweet with my daughter. I sat and talked with her the first hour, and my husband brought our daughter the last 15 min. I will say that the dr. seemed VERY sure of herself. Not arrogant, necessarily, but just really very sure of herself. Which is good... but I guess I just don't want any false hope. From all the research I have done, it seems roughly 20-30% of children are actually helped by this kind of treatment. My daughter's counselor feels it is probably closer to 50%, for various reasons, mostly because people have a hard time following the VERY strict diet, (i.e. any little dietary infraction makes a BIG difference) and that often people don't give it enough time to work. So I have to keep those things in mind.
The tests the dr. will be running to start with are: a complete digestive stool analysis, urine caso morphine through Great Plains, hair analysis, and this blood work to start: Candio CRP, CBC w diff, CMP, Lipid panel (fasting), Magnesium (RBC), TSH, T3free, T4, Urine R & M, C & S, Zinc (RBC), 25 (OH) D. 2 weeks later, she will do a Triad from Meta Metrix or Great Plains. I'm not sure what a Triad is or what it is testing for... I do have some follow-up questions for sure that I need to call about later today. We already are doing EFA (essential fatty acids- she is taking fish oil) supplements, but she wants us to take 4 a day now. We are also already doing digestive enzymes and probiotics. We just have to stop these 5 days before the Nutri Eval test... though I'm not sure what/when that test it.
I picked up Dr. Kenneth Bock's book and just started reading it. Hopefully it will help me to understand all of this stuff. It is one that keeps being recommended by various people. The dr. referenced it a few times yesterday, and seems to be interested in following the same protocol for the most part.
Say a little prayer for us as we begin. I'm scared... nervous... anxious... and yes, even a little hopeful. :)
I was feeling pretty pissed off yesterday. Pissed that we are the ones that have to do all this stuff. I mean... 99% of all of the people we know don't have to do any of this shit and their kids are just fine, you know? It just freakin' pisses me off sometimes. But it is what it is. We have 2 beautiful children who need us to do everything we can for them to have great lives, so we are trying to do just that. It just annoys me sometimes. Again, refer to my first blog post to hear how I feel about being blessed, and knowing how good I have it, etc. I get it. Just venting. After all, this blog IS called HOW THIS MOMMY REALLY FEELS. That is how I really feel. And I do have a very dear friend whose little boy is literally allergic to EVERYTHING. He simply cannot eat. I think his two safe foods are baby food applesauce and Dum Dum lollipops. He has to be fed through a tube in his stomach. So wah wah me, I'm gonna whine and complain because I have to remove a few things from my daughter's diet? I think we'll survive. It's just gonna suck until we get used to it. Time to put on the big girl panties and get this done!!!!
Sunday, June 24, 2012
The beginning
I'm not sure where to start... from now or from the beginning? I'll start with how I really feel... today. Today I am feeling sad, frustrated, hopeless, exhausted, emotional, out-of-patience, angry... you name it. I have been wanting to start this blog for a long time now. I have another blog that I haven't posted to in a year, which I guess is when things REALLY started to get tough and take its toll on me... when I really started to feel differently. That blog is about parenting... but the nice, sweet, heart-warming stuff that I feel comfortable sharing with everyone. This one... not so much. I don't know yet who I will share this with... or if I will share it with anyone... I don't know if I could ever be so honest as to how I really feel.
I can't say for sure when we knew our journey as parents was not going to be "typical." Goodness- what the hell is "typical," anyway, when it comes to parenting? Nothing, I guess... but I have to say, of all of our friends and family... there is maybe only one other person who has any inkling what it's like parenting a child with special needs. It still sometimes feels weird to say "special needs" when discussing my daughter, as I've always associated that term with physical handicaps or more severe issues such as Down Syndrome, serious health problems, severe autism, and the like. But what I am learning is that my daughter DOES have special needs, and I AM a parent of a child with special needs. You may say that every child has special needs in one way or another, and I suppose you may be right. I do agree with that statement... but the truth is, my daughter is anything but typical. I have seen people practically sit on their butts and watch their child be able to raise themselves. OK, definitely an overstatement, but you know what I mean, and if you don't... well, maybe you're one of the lucky ones (I always think of this passage from Mary Sheedy Kurcinka's epilogue to Raising Your Spirited Child... "The Rose in My Garden." "Spirited kids are like the roses in my garden. They need more attention. Throw a little water on the other flowers and they grow. Not the rose- it needs special treatment. It has to be pruned and guided in its growth"). Now, I KNOW that raising even a perfectly well-behaved, easy, issue-less child is FAR from easy. I do know how hard parents of these children work. This shit is hard, no matter how you slice it. But there certainly are differences, and if you can't think of what these differences may be, let me spell them out for you. Can you go to church as a family? Can you go to restaurants? Can you take your child shopping? Can you go to family outings or friends' houses or birthday parties or events without watching your child every second or scoping the place out like a Secret Service agent to see what she can possibly get into or to where she can escape? Can you take your child to the movies? Can you go on vacation, to the zoo, to the museum... and actually enjoy yourself? Are you always afraid that your child's off-the-charts impulsive behavior is going to cause her or someone else serious harm? Does your heart hurt when you think of your real fears for her future if this doesn't get better? Well... these are just a few of the "typical" things we can't do, or have a VERY hard time doing... and these are some of our very real fears that we live with every day. Let me just say it before you do... you may be thinking "be thankful for the child you have," or "God has a plan," etc... believe me, I know this... I do. I prayed hard for this baby girl, and we had a tougher time than many conceiving her. I personally know someone who lost a young child, and I'm certain she would give anything to have him with her today and be struggling with issues such as these. I know there are sweet babies out there fighting for their lives. I get this, I do. And I KNOW how lucky and blessed we truly are. I love both of my children more than life itself, and would honestly walk to the ends of the earth for them... I think most mothers feel this way. These two children have brought me more joy than I could have possibly imagined, and my daughter with special needs truly has more life, love, and joy in her heart than I have ever seen in another. But none of this makes our day-to-day life any easier, or makes me feel much better at the moment. This is my blog, my story... I need a way to vent and just get this all out. My hope and prayer is that by chronicling this, I can someday show my daughter how far she's come, how hard she's worked, and how much her father and I loved her along the way... even on the tough days.
About 4 months ago, we finally received some possible answers as to what may be going on with our sweet girl. She was given diagnoses of ADHD- combined type, (meaning both inattentive and hyperactive) Anxiety Disorder- both Generalized and Separation, and Sensory Processing Disorder. So a little bit of what some would call "Alphabet Soup..." ADHD, GAD, SPD, blah blah blah. It is believed at this point that the main underlying issue is her anxiety, as well as something called "constitutionally poor self-regulation" across all domains- attentional, sensory, emotional, and behavioral. This apparently manifests as emotional dysregulation, an increased anxiety response, exaggerated reactivity, a need for increased sensory stimulation, behavioral dysregulation, and physiological dysregulation (e.g. difficulties regulating appetite and sleep). It is stated in her evaluation that "While self-regulation difficulties account for all of her difficulties, there is no single DSM-IV diagnosis that adequately explains her particular constellation of symptoms. Therefore, her broad array of symptoms and clinical needs are best described by the following mental health diagnoses," (ADHD and Anxiety Disorder). Sensory Processing Disorder was diagnosed by an Occupational Therapist soon after. I am still learning about this disorder, but my daughter is what you would call a "sensory-seeker," meaning she is always seeking more sensory stimulation. She does also have some avoidant behaviors and some sensory sensitivities, for sure, particularly to sound and temperature. What we are learning is that for some reason, she has very limited, if any, coping skills. Things that were supposed to have developed naturally just have not developed. At this point, she is going to require a lot of support and intervention to gain the skills she needs. Truly, this is all just beginning for us, as it has taken this long to get help from the experts in this area. It's called BHRS, (Behavioral Health Rehabilitation Services) or Wraparound. You can only get these services if you qualify through the county/state... and you have to apply for Medical Assistance in order to qualify. My daughter does based on a loophole because she has special needs, but this has been a process of paperwork, red tape, evaluations, meetings, and the like. Finally, 4 months after her diagnoses, she is just now starting to receive services as of last week. We have also been doing weekly OT for a couple of months, and have been in weekly outpatient counseling for well over 6 months. The Wraparound services she will be receiving are mostly TSS (Therapeutic Support Staff) at 5 hours/wk and BSC (Behavioral Specialist Consultant) at 3 hr/wk (The BSC hours mostly are not face-to-face, but include paperwork, consulting with other team members, etc). The county did not approve the amount of hours recommended by the psychologist, nor did they approve her for a 4-month plan of care... they are giving her 60 days and she will need ANOTHER eval and we will need to have another meeting with the county, and hopefully the BSC and Wraparound agency we are working with can prove that she needs these hours and these are in fact going to help her. The way we are looking at all of this is Wraparound will (hopefully) help us with the behavioral issues, OT will help with the sensory issues, and outpatient counseling will specifically be addressing the anxiety.
It can be very difficult for a parent to feel pretty helpless. My husband and I are both well-educated individuals who come from good families... sometimes I feel like we should know how to do this... but we just don't. Some days I feel like we're doing pretty well, then something happens that makes me feel like I completely suck at this. And what sucks about THAT is that this is the one thing I always wanted to do... the one thing I truly thought I would be great at, and I'm sucking at it. So that's a pretty shitty feeling. But then I tell myself we're getting all the help and support that we can, and seeking out all of the resources to TELL us what to do with our daughter's unique set of diagnoses. Recently we have decided to try biomedical intervention... we have our first appointment coming up this week. I had briefly tossed around the idea of it before, but we were in such a desperate place, and after a long talk with the pediatrician who has known our daughter since birth, as well as some other team members, we had decided to try some stimulant meds to help with her ADHD symptoms. They were HORRIBLE, to say the least. It is obvious that due to her anxiety disorder, as well as the fact that she is generally a pretty emotional girl, that she will not be able to tolerate stimulants. Her reactions to low doses of both Adderall and Methylin (generic Ritalin) were similar- Adderall was worse- CRAZY off-the-charts anxiety and emotional reactions... I would take the hyperactivity and impulsivity ANY day after seeing what those drugs did to my daughter. It was pretty gut-wrenching to watch. After a lot of research on my own, chatting with a friend who does biomed for her son, and reaching out to one of my closest girlfriends who is starting to do some biomed herself, (she is a chiropractor) we have decided to give it our best shot. It essentially involves holistic treatment of the underlying issues in the body that may be causing our daughter's symptoms. After this first appointment, my assumption is she will undergo various tests- bloodwork, stool samples, etc. to look for food allergies/sensitivities, vitamin and mineral deficiencies, yeast overgrowth, etc. You then do an elimination diet and take supplements based on the findings and advice of the doctor. This specific doctor is an ND and MD (naturopathic doctor and conventional medical doctor) and considered to be a DAN doctor, (Defeat Autism Now) who has taken the DAN training and understands the biomedical approach. My daughter is not diagnosed with autism, though she certainly has some traits, and there was a time that more than one professional in our lives thought she probably was on the spectrum somewhere. This was ruled out, however there are many people that believe, and many parents that have reported success, with biomedical treatment and ADHD, not to mention that there are some doctors who actually feel that ADHD is in fact a milder form of autism. So... we shall see. I am VERY nervous about all of it. I believe in it, but I also know it typically will help a relatively small percentage- about 30%, I believe. Our daughter's counselor feels it is probably 50/50, as he said that the diets can be extremely difficult to follow, and even the smallest dietary infraction can have a negative effect, hence the parents giving up, thinking it's not working. It is also my understanding that it can take up to 6 months to see positive effects, and that's another reason that people will give up, again thinking it's not working. My goal is to give it our all, 100%, for 6 months and see what happens. I am most afraid of our daughter's reactions when she can't have a certain food that she wants/likes, and especially when she can't have what the other kids are having at school, parties, etc. At 4 years old, she is already starting to realize that she does things differently than other kids- i.e. "Well so-and-so doesn't have to take pills with dinner (digestive enzymes)," and "so-and-so doesn't need sleepy medicine (melatonin)," and "so-and-so doesn't go to therapy..." you get my drift. I learned that anxious kids do NOT like to be different, and I had no idea that was a part of her obsession with being like certain other children. She is not an easy-going kid who will just take what I say without question, or without a big fight... so this is going to be TOUGH, and I know that. I just don't see any way around it. It's all out-of-pocket, and it's ALOT of money... but I don't see how I can't at least rule this out. Wouldn't that be something, if that's what all of this was about?!?!? I HAVE to try, for my daughter. For our family. I am a bit skeptical that this is going to be some magical cure for everything, but maybe with all of the other interventions and if my husband and I can learn and stick to how we're supposed to be parenting her properly... well, maybe, just maybe this will all work together. This is my hope. Wish us luck!
I can't say for sure when we knew our journey as parents was not going to be "typical." Goodness- what the hell is "typical," anyway, when it comes to parenting? Nothing, I guess... but I have to say, of all of our friends and family... there is maybe only one other person who has any inkling what it's like parenting a child with special needs. It still sometimes feels weird to say "special needs" when discussing my daughter, as I've always associated that term with physical handicaps or more severe issues such as Down Syndrome, serious health problems, severe autism, and the like. But what I am learning is that my daughter DOES have special needs, and I AM a parent of a child with special needs. You may say that every child has special needs in one way or another, and I suppose you may be right. I do agree with that statement... but the truth is, my daughter is anything but typical. I have seen people practically sit on their butts and watch their child be able to raise themselves. OK, definitely an overstatement, but you know what I mean, and if you don't... well, maybe you're one of the lucky ones (I always think of this passage from Mary Sheedy Kurcinka's epilogue to Raising Your Spirited Child... "The Rose in My Garden." "Spirited kids are like the roses in my garden. They need more attention. Throw a little water on the other flowers and they grow. Not the rose- it needs special treatment. It has to be pruned and guided in its growth"). Now, I KNOW that raising even a perfectly well-behaved, easy, issue-less child is FAR from easy. I do know how hard parents of these children work. This shit is hard, no matter how you slice it. But there certainly are differences, and if you can't think of what these differences may be, let me spell them out for you. Can you go to church as a family? Can you go to restaurants? Can you take your child shopping? Can you go to family outings or friends' houses or birthday parties or events without watching your child every second or scoping the place out like a Secret Service agent to see what she can possibly get into or to where she can escape? Can you take your child to the movies? Can you go on vacation, to the zoo, to the museum... and actually enjoy yourself? Are you always afraid that your child's off-the-charts impulsive behavior is going to cause her or someone else serious harm? Does your heart hurt when you think of your real fears for her future if this doesn't get better? Well... these are just a few of the "typical" things we can't do, or have a VERY hard time doing... and these are some of our very real fears that we live with every day. Let me just say it before you do... you may be thinking "be thankful for the child you have," or "God has a plan," etc... believe me, I know this... I do. I prayed hard for this baby girl, and we had a tougher time than many conceiving her. I personally know someone who lost a young child, and I'm certain she would give anything to have him with her today and be struggling with issues such as these. I know there are sweet babies out there fighting for their lives. I get this, I do. And I KNOW how lucky and blessed we truly are. I love both of my children more than life itself, and would honestly walk to the ends of the earth for them... I think most mothers feel this way. These two children have brought me more joy than I could have possibly imagined, and my daughter with special needs truly has more life, love, and joy in her heart than I have ever seen in another. But none of this makes our day-to-day life any easier, or makes me feel much better at the moment. This is my blog, my story... I need a way to vent and just get this all out. My hope and prayer is that by chronicling this, I can someday show my daughter how far she's come, how hard she's worked, and how much her father and I loved her along the way... even on the tough days.
About 4 months ago, we finally received some possible answers as to what may be going on with our sweet girl. She was given diagnoses of ADHD- combined type, (meaning both inattentive and hyperactive) Anxiety Disorder- both Generalized and Separation, and Sensory Processing Disorder. So a little bit of what some would call "Alphabet Soup..." ADHD, GAD, SPD, blah blah blah. It is believed at this point that the main underlying issue is her anxiety, as well as something called "constitutionally poor self-regulation" across all domains- attentional, sensory, emotional, and behavioral. This apparently manifests as emotional dysregulation, an increased anxiety response, exaggerated reactivity, a need for increased sensory stimulation, behavioral dysregulation, and physiological dysregulation (e.g. difficulties regulating appetite and sleep). It is stated in her evaluation that "While self-regulation difficulties account for all of her difficulties, there is no single DSM-IV diagnosis that adequately explains her particular constellation of symptoms. Therefore, her broad array of symptoms and clinical needs are best described by the following mental health diagnoses," (ADHD and Anxiety Disorder). Sensory Processing Disorder was diagnosed by an Occupational Therapist soon after. I am still learning about this disorder, but my daughter is what you would call a "sensory-seeker," meaning she is always seeking more sensory stimulation. She does also have some avoidant behaviors and some sensory sensitivities, for sure, particularly to sound and temperature. What we are learning is that for some reason, she has very limited, if any, coping skills. Things that were supposed to have developed naturally just have not developed. At this point, she is going to require a lot of support and intervention to gain the skills she needs. Truly, this is all just beginning for us, as it has taken this long to get help from the experts in this area. It's called BHRS, (Behavioral Health Rehabilitation Services) or Wraparound. You can only get these services if you qualify through the county/state... and you have to apply for Medical Assistance in order to qualify. My daughter does based on a loophole because she has special needs, but this has been a process of paperwork, red tape, evaluations, meetings, and the like. Finally, 4 months after her diagnoses, she is just now starting to receive services as of last week. We have also been doing weekly OT for a couple of months, and have been in weekly outpatient counseling for well over 6 months. The Wraparound services she will be receiving are mostly TSS (Therapeutic Support Staff) at 5 hours/wk and BSC (Behavioral Specialist Consultant) at 3 hr/wk (The BSC hours mostly are not face-to-face, but include paperwork, consulting with other team members, etc). The county did not approve the amount of hours recommended by the psychologist, nor did they approve her for a 4-month plan of care... they are giving her 60 days and she will need ANOTHER eval and we will need to have another meeting with the county, and hopefully the BSC and Wraparound agency we are working with can prove that she needs these hours and these are in fact going to help her. The way we are looking at all of this is Wraparound will (hopefully) help us with the behavioral issues, OT will help with the sensory issues, and outpatient counseling will specifically be addressing the anxiety.
It can be very difficult for a parent to feel pretty helpless. My husband and I are both well-educated individuals who come from good families... sometimes I feel like we should know how to do this... but we just don't. Some days I feel like we're doing pretty well, then something happens that makes me feel like I completely suck at this. And what sucks about THAT is that this is the one thing I always wanted to do... the one thing I truly thought I would be great at, and I'm sucking at it. So that's a pretty shitty feeling. But then I tell myself we're getting all the help and support that we can, and seeking out all of the resources to TELL us what to do with our daughter's unique set of diagnoses. Recently we have decided to try biomedical intervention... we have our first appointment coming up this week. I had briefly tossed around the idea of it before, but we were in such a desperate place, and after a long talk with the pediatrician who has known our daughter since birth, as well as some other team members, we had decided to try some stimulant meds to help with her ADHD symptoms. They were HORRIBLE, to say the least. It is obvious that due to her anxiety disorder, as well as the fact that she is generally a pretty emotional girl, that she will not be able to tolerate stimulants. Her reactions to low doses of both Adderall and Methylin (generic Ritalin) were similar- Adderall was worse- CRAZY off-the-charts anxiety and emotional reactions... I would take the hyperactivity and impulsivity ANY day after seeing what those drugs did to my daughter. It was pretty gut-wrenching to watch. After a lot of research on my own, chatting with a friend who does biomed for her son, and reaching out to one of my closest girlfriends who is starting to do some biomed herself, (she is a chiropractor) we have decided to give it our best shot. It essentially involves holistic treatment of the underlying issues in the body that may be causing our daughter's symptoms. After this first appointment, my assumption is she will undergo various tests- bloodwork, stool samples, etc. to look for food allergies/sensitivities, vitamin and mineral deficiencies, yeast overgrowth, etc. You then do an elimination diet and take supplements based on the findings and advice of the doctor. This specific doctor is an ND and MD (naturopathic doctor and conventional medical doctor) and considered to be a DAN doctor, (Defeat Autism Now) who has taken the DAN training and understands the biomedical approach. My daughter is not diagnosed with autism, though she certainly has some traits, and there was a time that more than one professional in our lives thought she probably was on the spectrum somewhere. This was ruled out, however there are many people that believe, and many parents that have reported success, with biomedical treatment and ADHD, not to mention that there are some doctors who actually feel that ADHD is in fact a milder form of autism. So... we shall see. I am VERY nervous about all of it. I believe in it, but I also know it typically will help a relatively small percentage- about 30%, I believe. Our daughter's counselor feels it is probably 50/50, as he said that the diets can be extremely difficult to follow, and even the smallest dietary infraction can have a negative effect, hence the parents giving up, thinking it's not working. It is also my understanding that it can take up to 6 months to see positive effects, and that's another reason that people will give up, again thinking it's not working. My goal is to give it our all, 100%, for 6 months and see what happens. I am most afraid of our daughter's reactions when she can't have a certain food that she wants/likes, and especially when she can't have what the other kids are having at school, parties, etc. At 4 years old, she is already starting to realize that she does things differently than other kids- i.e. "Well so-and-so doesn't have to take pills with dinner (digestive enzymes)," and "so-and-so doesn't need sleepy medicine (melatonin)," and "so-and-so doesn't go to therapy..." you get my drift. I learned that anxious kids do NOT like to be different, and I had no idea that was a part of her obsession with being like certain other children. She is not an easy-going kid who will just take what I say without question, or without a big fight... so this is going to be TOUGH, and I know that. I just don't see any way around it. It's all out-of-pocket, and it's ALOT of money... but I don't see how I can't at least rule this out. Wouldn't that be something, if that's what all of this was about?!?!? I HAVE to try, for my daughter. For our family. I am a bit skeptical that this is going to be some magical cure for everything, but maybe with all of the other interventions and if my husband and I can learn and stick to how we're supposed to be parenting her properly... well, maybe, just maybe this will all work together. This is my hope. Wish us luck!
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