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Topic : Raising a Special Needs Child

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Created on : Friday, July 01, 2005, 12:48:15 pm
Author : dataimport
Do you have a child with special needs? Share your advice and support with others raising a challenged child.

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April 20, 2007, 9:31 am CDT

Raising a Special Needs Child

Quote From: twistedpixie

thank you for taking the time to read what im going through, its a good feeling knowing im not alone with whats going on with my son. i hope things are working well with you, i know it can be hard seeing our children go through, what they go through.
 Your welcome. No your not alone and yes it is hard. But your a good Mom or you wouldn't care so much. I always said God made my son this way for a reason. We did move to a new school this year. My son hated the last school. Teachers just wanted him doped up even though  he was having bad side effects from the meds. Even now some of the boys on his ball team are mean to him and don't like him. He is high energy. I try to explain to him to slow down or try to be quieter but he can't help it. I've heard it explained like try to Imagine ants are crawling all over you
 
April 24, 2007, 5:28 pm CDT

Stressed & Depressed

Hi all,

 

I am a 37 yr old wife and mother of 3 beautiful children...2 boys (Cody 12, Zach 3 and my newest addition...my preemie baby girl Adriana).  I have struggled for the last 9 1/2 yrs to find help for my oldest son Cody and his trials in being diagnosed ADHD/ODD.  He has NOW been labeled bipolar.  For the past 5 yrs, my husband has been 'introduced' into being a step-parent of a special needs child & has found it equally, if not, all the more frustrating, since he is still kind of new to this.

Here's my dilemma:  Since the age of 2 1/2, Cody has been 'released' from a daycare facility, 3 schools, babysitters refusing to babysit him, taken to juvenile detention twice (once for a safe school violation and another for domestic abuse against my husband and his younger brother Zach), and NOTHING has seemed to phase him.  He has been on a string of meds since he was 4, ranging from Concerta to Strattera, Adderal to Methylin, a few more I lost track of in between, and currently taking Focalin and Depakote.  I am worried about shoving all these medications down the back of my son's throat, not knowing the side effects or long range complications they can have.  I feel the doctors are too quick to diagnose and are playing Russian roulette with my child, while we are standing back and letting them do so.

I am worn out and frustrated, depressed and stressed to the max.  I am literally running out of options.  He most recently spent a week on & off in a rescue intervention facility for unruly behavior.  Just the other day, my hubby called me during a doctor's appt. to get home fast because he had called the police to come out and have a talk to Cody.  Needless to say, I was FURIOUS!  It seems lately like my husband's first reaction or verbal comment whenever he has a meltdown is to 'call the cops and have THEM deal with it'.  It is straining our lives, the lives of those we come in contact with, and our marriage.  I am at the end of a short fuse about to explode.  Strange thing is; he and Cody were the best of buddies BEFORE we were married, after we got hitched, that relationship went straight to hell!

I know there is a great deal of emotional abuse locked within Cody.  I can not confirm or deny that "I" am part to blame in his development.  This kid has been caught in the middle of several heated battles between his biological father (who recently passed away from a long illness in January, he was 4 yrs younger than me), my parents and I, and my husband and me.  Although he lost his real father, Kevin has been there from day one, whereas his own dad rarely ever was.  There might be a jealousy issue inside too...my other two children have a father, Cody in HIS eyes does not.

JAIL is the LAST place I want to have my son sent to.  I have heard the "tough love" stories, and have lived a few, but this is MY son, and I CAN'T & WON'T give up on finding him the perfect solution, or at the most, a happy medium.  I have considered boot camp or military school in the hopes of knocking some sense into him or giving him the guidance/discipline he so well needs.  However; I am running out of options and resources to help him on his journey to the positive. 

Can someone, ANYONE, offer me some advise?  I am afraid that if he can not be reached soon, we won't be able to save him from himself.

 

Thank you in advance,

 

Kris Cunning

 

 
April 25, 2007, 2:59 am CDT

Raising a Special Needs Child

Quote From: kat869

Hi all,

 

I am a 37 yr old wife and mother of 3 beautiful children...2 boys (Cody 12, Zach 3 and my newest addition...my preemie baby girl Adriana).  I have struggled for the last 9 1/2 yrs to find help for my oldest son Cody and his trials in being diagnosed ADHD/ODD.  He has NOW been labeled bipolar.  For the past 5 yrs, my husband has been 'introduced' into being a step-parent of a special needs child & has found it equally, if not, all the more frustrating, since he is still kind of new to this.

Here's my dilemma:  Since the age of 2 1/2, Cody has been 'released' from a daycare facility, 3 schools, babysitters refusing to babysit him, taken to juvenile detention twice (once for a safe school violation and another for domestic abuse against my husband and his younger brother Zach), and NOTHING has seemed to phase him.  He has been on a string of meds since he was 4, ranging from Concerta to Strattera, Adderal to Methylin, a few more I lost track of in between, and currently taking Focalin and Depakote.  I am worried about shoving all these medications down the back of my son's throat, not knowing the side effects or long range complications they can have.  I feel the doctors are too quick to diagnose and are playing Russian roulette with my child, while we are standing back and letting them do so.

I am worn out and frustrated, depressed and stressed to the max.  I am literally running out of options.  He most recently spent a week on & off in a rescue intervention facility for unruly behavior.  Just the other day, my hubby called me during a doctor's appt. to get home fast because he had called the police to come out and have a talk to Cody.  Needless to say, I was FURIOUS!  It seems lately like my husband's first reaction or verbal comment whenever he has a meltdown is to 'call the cops and have THEM deal with it'.  It is straining our lives, the lives of those we come in contact with, and our marriage.  I am at the end of a short fuse about to explode.  Strange thing is; he and Cody were the best of buddies BEFORE we were married, after we got hitched, that relationship went straight to hell!

I know there is a great deal of emotional abuse locked within Cody.  I can not confirm or deny that "I" am part to blame in his development.  This kid has been caught in the middle of several heated battles between his biological father (who recently passed away from a long illness in January, he was 4 yrs younger than me), my parents and I, and my husband and me.  Although he lost his real father, Kevin has been there from day one, whereas his own dad rarely ever was.  There might be a jealousy issue inside too...my other two children have a father, Cody in HIS eyes does not.

JAIL is the LAST place I want to have my son sent to.  I have heard the "tough love" stories, and have lived a few, but this is MY son, and I CAN'T & WON'T give up on finding him the perfect solution, or at the most, a happy medium.  I have considered boot camp or military school in the hopes of knocking some sense into him or giving him the guidance/discipline he so well needs.  However; I am running out of options and resources to help him on his journey to the positive. 

Can someone, ANYONE, offer me some advise?  I am afraid that if he can not be reached soon, we won't be able to save him from himself.

 

Thank you in advance,

 

Kris Cunning

 

First I suggest you and your husband read all the warnings on these meds. Look at your son are they helping him? After Reading on the Internet about the dangers of the ones my son was on He at age 13 flushed them. Second I've heard Dr. Phil warn about getting the police involved in family matters. If you plan to live in this town for a long time have you thought of the long term damage this could cause? Bad reputation /other kids parents unfairly judge him/ police "knowing " him could make him a target later to them. For a child with ODD to try and get tough hasn't worked for me and mine. He is DEFIANT that's the disorder. We tend to try and deescalate the situation with a calm voice. The police couldn't scare my son when he was in second grade either. He had no fear of anything.  Rational thinking:  try to show him that he doesn't need to sas me when I'm nicely asking him to get up. The school has a hard time with any child that won't fit into their mold not just yours! I hope you have an IEP so he can get help. In my state ODD is not recognized as a disorder as far as the school so we worked in a plan called 504 for that. I suggest counseling for you and your husband with some one who is qualified in your area of need. And counseling for your son where he can learn to verbalize his feelings. The therapists can teach him how to do it in an acceptable way. Maybe your husband could spent some time with Cody alone doing something they enjoy so they can laugh. Throw the ball. Go for a hike.Go fishing.Something where your son can be praised. As time goes on and with proper knowledge your husband could have father son talks about varies subjects. Being a parent is the hardest job we ever take on in life.I have cried in talking to my son how overwhelmed I was due to his behavior at school. Thankfully things are getting better this year. Not huge progress but progress. These kids need more love and praise and attention than a child without ADHD. Set up opportunities for your son to succeed. Teach him to cook and when everyone loves the food he gets a pay off. Keep your chin up. Your doing the best you can.
 
April 26, 2007, 1:53 pm CDT

A message to Kris Cunning

Reading your story was like re-living 5 years ago I have a son who has been diagnosed with Bipolar disorder, ADHD, ODD, and PDD. He also had a rule out of Aspberger's Syndrome. My son is now 9years old and when he was five I thought I was going to go crazy, I have a boyfriend now of four years and he has endured just as much as I have if not more. My son has witnessed alot of domestic violence when I was in the relationship with his biological father, and although he hasn't been apart of his life for years now he displayed all that aggression for what he was feeling. There were days when he was completely obsessed with finding a way to kill him. At the age of 5 my son was escorted home by the police 28 times, suspended multiple times for fighting, they also devised a saftey plan for the class for when he escalated. The restraints at home ranged from 6-8 times aday and could last anywhere between 5minutes to a couple of hours. I had meetings at least 4-5 times a week. He was hospitalized 4 times, and I had an intervention team come in for added therapy to the one day a week to outpatient therapy. In the wraparound agency if achild had 20 hours of their services it was a extreme case. My son was noted as extrememly emotionally disturbed and he started with 40 hours a week and it increased to 50. I worried about him constantly and just wanted him to be happy, I wanted him to be able to play with the other kids, engage in social activities, I never though I would see a better day....That was 5 years ago and now he's going to be 10 in a few months, He has made a tremendous amount of progress, he is no longer violent at home and He has few restraints at school. My son still stuggles with some issues everything hasn't been peachy but I am thankful for these moments. I was in tears when I was reading your story, I want you to know that there is hope and he will be okay always remind him that you are never going to give up, no matter what.  Some things I have learned is that you have to be consistant with what you do. When the workers came to my house they said that I should try and count to three...I was thinking to myself "Are you people crazy?" This kid is ripping my house to shreds and you want me to count. I have already tried that" What I didn't realize is that it was how I counted, I use to say One,..Two,...Two and a half.....Well there was my mistake, I needed to count One, Two, Three, then consequence. That is just an example of some things I have picked up on over these years of what I was doing wrong. I also know that you should trust your instincts when it comes to making the decisions for your son, the professionals don't always know what is best for your child, I've come to know that hands on experience,  beats text book any day. I don't want to write you a book like I probably just did :) but I wanted you to know that you are not alone. It will get better even if you can see it now, just have faith.
 
May 7, 2007, 8:12 am CDT

Raising a Special Needs Child

Quote From: kat869

Hi all,

 

I am a 37 yr old wife and mother of 3 beautiful children...2 boys (Cody 12, Zach 3 and my newest addition...my preemie baby girl Adriana).  I have struggled for the last 9 1/2 yrs to find help for my oldest son Cody and his trials in being diagnosed ADHD/ODD.  He has NOW been labeled bipolar.  For the past 5 yrs, my husband has been 'introduced' into being a step-parent of a special needs child & has found it equally, if not, all the more frustrating, since he is still kind of new to this.

Here's my dilemma:  Since the age of 2 1/2, Cody has been 'released' from a daycare facility, 3 schools, babysitters refusing to babysit him, taken to juvenile detention twice (once for a safe school violation and another for domestic abuse against my husband and his younger brother Zach), and NOTHING has seemed to phase him.  He has been on a string of meds since he was 4, ranging from Concerta to Strattera, Adderal to Methylin, a few more I lost track of in between, and currently taking Focalin and Depakote.  I am worried about shoving all these medications down the back of my son's throat, not knowing the side effects or long range complications they can have.  I feel the doctors are too quick to diagnose and are playing Russian roulette with my child, while we are standing back and letting them do so.

I am worn out and frustrated, depressed and stressed to the max.  I am literally running out of options.  He most recently spent a week on & off in a rescue intervention facility for unruly behavior.  Just the other day, my hubby called me during a doctor's appt. to get home fast because he had called the police to come out and have a talk to Cody.  Needless to say, I was FURIOUS!  It seems lately like my husband's first reaction or verbal comment whenever he has a meltdown is to 'call the cops and have THEM deal with it'.  It is straining our lives, the lives of those we come in contact with, and our marriage.  I am at the end of a short fuse about to explode.  Strange thing is; he and Cody were the best of buddies BEFORE we were married, after we got hitched, that relationship went straight to hell!

I know there is a great deal of emotional abuse locked within Cody.  I can not confirm or deny that "I" am part to blame in his development.  This kid has been caught in the middle of several heated battles between his biological father (who recently passed away from a long illness in January, he was 4 yrs younger than me), my parents and I, and my husband and me.  Although he lost his real father, Kevin has been there from day one, whereas his own dad rarely ever was.  There might be a jealousy issue inside too...my other two children have a father, Cody in HIS eyes does not.

JAIL is the LAST place I want to have my son sent to.  I have heard the "tough love" stories, and have lived a few, but this is MY son, and I CAN'T & WON'T give up on finding him the perfect solution, or at the most, a happy medium.  I have considered boot camp or military school in the hopes of knocking some sense into him or giving him the guidance/discipline he so well needs.  However; I am running out of options and resources to help him on his journey to the positive. 

Can someone, ANYONE, offer me some advise?  I am afraid that if he can not be reached soon, we won't be able to save him from himself.

 

Thank you in advance,

 

Kris Cunning

 

Holy cow!

Frst of all, I think the whole family needs to get in some form of family counselling to learn ways to deal with the everyday issues of having a special needs child in the house.

Second thing I would do is try homeschooling your son. Get him out of school and keep him home where you can 1. monitor his behavior better, and 2. monitor the effectiveness of the medications better. Is he in a special classroom? Does he have an IEP?

3. does your son see a psychiatrist to monitor the medications? ideally, a psychiatrist should be prescribing/monitoring rather than a family dr. or developmental ped. Do they have suggestions for behavioral interventions?

4. you say that your son "could" have emotional abuse issues relating to his early years. Has he been in therapy for that? Has he rec. counselling to deal with the death of his dad? Things that happen pre-verbally can have a tremendous impact on the central nervous system and the developing brain. Could he have PTSD? If so, he needs to be treated for that! That will not go away on its own!

5. has he had any brain scans? there is a dr., Dr. Mena who does spect scans. You can google him, he has tons of very interesting research that concerns blood activity in the brain, viruses, yeasts and foods and thier impact on the brain and issues. look him up and read some of his articles. perhaps contact him? I don't know what your situation is--if you have the means for this.

6. Please don't do those boot camp type places, it's obvious that your son has some mental illness right now. it would be totally unfair to put him in a situation that could demean and shame him for something that he can't control. He needs to be treated, not just with medication, but along with a plan of therapy. If your current psychiatrist or psychologist is not doing this, get another one. IS there a large Children's Hospital in your area?

I wish you luck in your journey. And with your other children.
 
May 7, 2007, 8:18 am CDT

Raising a Special Needs Child

Quote From: twistedpixie

i am a mother with a 10 year old child who has ADHD combined type  he needs to be placed in a special day class at school and  I'm having a hard time getting the school to meet my child's needs, because the other kids make fun of him and he always seems to be  in trouble at school, it has become a hostile environment for him, they look at him as a problem child, not a child with a problem. he has alot of emotional problems and the problems I'm having with the school only makes things harder. my son has so much anger it frightens me. what can i do?
Sned a letter to the head of the child study team and specify that you would like your daughter placed in an appropriate class based on her need for xxxx (which your doctor should specify). They are required by law to respond to any written request. If your child has a diagnosis, they SHOULD respect that, but don't HAVE to. (This may very by state). HOWEVER, you can request a full evaluation of your child based on issues she is having in the classroom and at home. And they have to accommodate you.

Good luck!

If they are anything but accomodating to you, contact an education lawyer.
 
May 18, 2007, 9:29 pm CDT

Helping your special needs child

I also have a child with special needs, i had to fight the school system of NY city to make sure that she recieived the services that she needs. There are several things that you need to do.

1 Have your pediatricitan recommend a therapist.

2 Have your doctor recommend to the school that your child be evaluated for special services.

3 Talk to the psychologist or school counslor to have your child recieive some kind of therapy while in school until you can get him into a school for children with Learning disabilites. And no just becasue he's in a class for children with LD doesn't mean that he'll have to stay there for the rest of his school years.  There is a federal law that states that children with Learning disabilites have to be provided with an Appropiate education.  I think that part of your son's problem is that noone is sure how to deal with him.  Neither the school or you and your husband.  One of the First things that you have to do is have your husband STOP calling the police.  That's not helping.

4. Do some reashearch to find a school that would be able to help him. Go to the VESID web site for your state and find state sponsored schools in your area.  Contact one or two and see what their criteria  for admissions is.  Since I have found a school that helps my daughter learn the way that she needs to her average is 92.

Your child needs a IEP and Individiual Education Plan that means that you come up with a plan in conjuction with the school to decided what services your son needs, For instance my daughter gets Occupational therapy to help her with her handwriting, she see a counslor once a week and she gets extra time on her tests, to answer verbally  becasue she's dsylexic  and has find motor skill issues. 

After my child was dignosed I got letter from every doctor that dealt with her saying that she needed a special school with small classes.  I also had her IQ tested so that I could make sure that she would be put in class with children on her same IQ level.  You need to do the same, get letters from every doctor that inter acts with your son. I got letters from my daughters pediatriacan, her psychologist, psychitriast, nureologist, with recomemdations from her teachers.

The more imput you get from outside of the Departament of Education the better. 

The suggestion in the previous message that you and your family enter family therapy is also a good idea. But you also need to find a school that can deal with your son. After the first IEP is generated you will have IEP meeting each year on the ann. of the first one. that will give you the opportunity to along with the teachers, counslors, and others who deal with your child to sit down and decide if anything needs to change.  Every three years you will have what is called a TRianual evaluation, That means that your son will be retestesed to see if he still needs the services.  What you need to also know is that  any time you want to change things you can request a reevaluation your self.   The ratio of students to teachers at my daughter's school is 12:1:1 that means that there are only twelve students in the class to one class teacher with an assistant. This is in all of her classes even gym. 

I have seen the difference that this school has made in my daughter's life, She's happy and confident in herself.  This is her first year in high school and she's managed to acheive an average of 90 or better this whole year so far.  Last year she was Student body president and she volunterred at a nearby public school and worked with the younger students.  This is something that she won't have done in a regular school setting. she didn't have the confidence than. If you need any more help let me know. This is what I do. I advocate for children with learning disabilites. Good luck and if you need more informations I'm here for you.

 
May 21, 2007, 12:47 pm CDT

Raising A Special Needs Child

Quote From: ampugs

Can anyone tell me if Munchausin-by-proxy included phych 'problems' or is it limited to physical stuff only?

 

I am looking for that answer too.  I will do all the searching I can, and if I can find something I will get back to you.   Please let me know if you find the answer, I would really appreciate it.

 

 

 
May 31, 2007, 6:20 am CDT

Hope this helps...

Quote From: wahmomof3

Good Morning! 

  

My name is Joanne - I live in Canada with my husband and 3 children.  Our oldest is 7 and is a well rounded smart little girl and a joy to be with.  Our middle is 6 and he is more than a handful most of the time.  Our youngest is 2 now and she is personality plus and learning so much from her brother and sister. 

  

I watch Dr. Phil every morning since I have to record it.  I have not found really anything useful or helpful in our particular situation.  I have also spent a great deal of time on the boards reading and reading hoping to find someone with a similar situation and haven't yet. 

  

Both my husband and I are searching for answers with respects to our 6 year old son.  We noticed that he wasn't developing like our daughter did and simply put it down to all kids develop differently.  As time passed and he wasn't developing speech like we thought he should so we took him into a pediatrician.  Because our son was so young the doctor said we need to keep an eye on things which we have continued to do. 

  

By the time school rolled around we knew that he was behind considerably.  He spent 1 year (all the time allowed) in a school specific for speech delays as well as other disabilities.  While he was there he has speech therapy 3 times a week.  He didn't connect with the therapist so he really didn't put forth much effort.  We also were doing sign language with him so he could communicate a little bit at least.  We taught our oldest daughter to use it also.  We were told by the school not to sign with him any more because he was relying on that versus his words and increasing his word base. 

  

Our son is now 6 and will be 7 in July.  He is working at below a senior kindergarden capacity - he has an IEP and has a full time Educational Assistant while he is there. 

  

We have had blood work done, cat scans done, and seen a variety of doctors including an ENT who removed his tonsils and adnoids.  Everything has come up as it should so far.  We have been told he doesn't present with ADD/ADHD, Fragile X, Autism, or Asperger's.  They have told us everything that isn't the case but not what we are dealing with. 

  

I love my son so much - I want only happiness and the best for him.  When he is at school because his speech is not always understandable (chunks in 3-5 word sentences with very bad grammer) the kids will just walk away from him.  This I'm sure is hurtful to him however he hasn't vocalized that with words.  His fine motor skills are seriously lacking also.  I work at home with him as best I can - I have no training for this.   

  

Our youngest is learning a lot of bad habits that he presents with.  When he is making bad choices which happens often I have tried rewards of toys or gum etc. I have tried time outs, taking toys away, yelling, spanking (makes me feel awful!), I have even put myself on time outs locked in the bathroom to get away briefly.  Nothing seems to work!  My husband and I have no idea what we are dealing with and without that we are finding it very stressful dealing with him in a manner that will be effective. 

  

I feel badly for our oldest who is unfortunately getting the short end of the stick sometimes because our son needs so much extra time.  We try to explain it to her however she does only have a 7 year old thought process.  I'm afraid that there will be resentment later. 

  

I worry that our 2 year old will blow past him.  She is already speaking quiet a bit - how will our son feel when she is so much younger than him and is doing so much better? 

  

I worry that he will be picked on and bullied at school because he doesn't have the words to proctect himself when I'm not there. 

  

I'm a mother who decided to stay at home and work from home.  My husband workds extremely long hours so it's always me dealing and it's exhausting which is affecting my health also.  We never go out as a couple because I don't trust him with a babysitter. 

  

Our son certainly is an "own agenda" kid.  He has some days where I enjoy being with him and spending time.  I feel bad on the days that he makes 1 bad choice after another that I just want to up and leave (never would).   

  

He is not aggressive other than the normal sibling thing - I have older brothers so I know all about that :)  He is very caring.  He can be quiet funny. 

  

With school it's difficult to access his needs because he will cop out with an "Me no know" instead of sharing what he does know.  We have a communications book that goes back and forth between his EA and home where they will say he doesn't know something or couldn't do something and I know that he can. 

  

We had a letter come home last week from the Special Ed. Head that our son will finally be getting a psycho ed accessment so hopefully that will shed some light on this.  He has been placed on a 1 year waiting list for speech therapy.  My husband and I have done the Hanon Program with him and now that he is older it's more effective. 

  

If he get's it in his mind that he isn't going to do something he won't - it's just that simple.  Every Friday the kids are sent home with homework.  It's a tracing letter page - should take approximately 5 minutes to do.  With all the fighting back and forth to get him to do it sometimes we are there for 45 minutes!  He can do it AND he can do it well so I don't know why he resists so much. 

  

We are feeling very frustrated for him and for us.  If you have made it to the end of my long winded post and have any suggestions I'm open. 

  

One last thing - we don't believe in medicating is the right option for him. 

  

Sincerely, 

Joanne 

Hi Joanne,

 

It's been a year since you last posted your message and I'm hoping that by now, you've found the answers to your questions.  Do allow me to share with you some things that my husband and I have done in our family to help us find out answers to our own questions too.  Maybe, these can still be helpful to you. :)

 

We have a 3 1/2 year old daughter who's been diagnosed with Epilepsy and Language Disorder.  We also have an 11 month old who,so far, is normal according to developmental expectations.  The discovery of our eldest daughter's condition took more than two years and finding the answers required going to different doctors, therapists, undergoing tests and going for second opinions.  In our case, our family pediatrician noticed that our daughter wasn't saying much at about 1 1/2 years, not even babbling!  So she asked us to see a developmental pediatrician.  I suppose that you've done this already.  Such pedia could give you an assessment of age levels of your son's various skills (motor, speech, etc.) and you will see just how delayed he is, if such is the case.  The dev pedia couldn't quite place our daughter in any of the known disorders/conditions since she wasn't consistently showing signs in any of them (like autism, ADHD) but she recommended to start occupational therapy in preparation for speech therapy for her.  Contrary to extended family opinion that our daughter was simply a "late bloomer", we got her into OT and speech therapy thereafter.  After a few months, our daughter started to have a seizure and had 2 bouts thereafter.  Since she's having multiple seizures, we were advised to seek a neuro pedia.  Both our neuro pedia and dev pedia recommended EEG and MRI to determine if she has epilepsy and if there was anything in her brain that proves to be the focus of her seizures and can possibly explain her developmental delays.  Just a few weeks ago, we got the results and saw that she indeed has epilepsy and that a couple of lesions in her brain are what's causing it.  In addition, the lesions are found in the portion of the brain that affects language, therefore, her speech delay.  Our daughter now is trying an anti-convulsant and her therapist (and even my husband and I) have seen significant improvements in her.  She initiates conversations more and is more confident in speaking words that she already knows.  However, her expressive speech skill is still at 2 years of age. 

 

Looking back on our journey, I realize that the following have proved to be our success

1. Find medical professionals that you can trust with the health and development of your child and try to forge a team out of them.  Right now, our dev pedia knows our speech therapist and our neuro pedia, and our family pedia stays on top of all the outcome of everyone's input (we trust our dev pedia very much and her professional opinion counts a lot to us).

 

2. Research, read, learn.  We always research on tests to be done (so that we can decide as a couple if these are necessary or just nice-to-have).  Being informed is the best way we can draw out answers from trained professionals.

 

3. Be a good listener and consider the opinion of others especially if it's in an area that you're not too good at, without letting go of your own actual experiences/research/knowledge of your child as inputs to crafting the right treatment/therapy for your child.  Sometimes, my husband and I have the tendency to be defensive, what with meeting overrated therapists who provide textbook advice and not looking very much into our child's particular case/milestones.  After a while, we've learned to stay calm whenever talking with others, digest what they're saying and see how it fits into what we're trying to arrive at.

 

4. Get as much rest/sleep/breaktimes and good nutrition as you can in order to increase your body's stamina for very special needs.  Share the load with your husband and get support from those you trust whenever you can.

 

5. Get the best photos of each of your children and your husband and put them at a place in your house which you consider to be your break-out spot.  Each time I look at my own set of pictures, I get refreshed by their happy faces and realize that it's not anybody's fault that our family has special challenges.  It simply is a challenge that all of us have to deal with lovingly.

 

6. Maintain good communication with everyone in the family, providing chances to process feelings and emotions without being judgmental of the other.  In our case, there were a lot of teary conversations but  they helped release our frustrations in a peaceful manner.  Learn also how to communicate effectively with your husband and children of diff ages by reading up on it.  Moreover, the best formula we've found is to communicate with BOTH love and respect for the other.

 

7. Pray, pray, pray.  A lot of times, my husband and I realized that we were led to the right people out of all the prayers that we've asked family and friends to say for us

 

Now that my husband and I have the INITIAL answers, the challenge our family is going through now is one on adjustment to our eldest daughter's condition, always being very cautious about her health and managing possible triggers for an attack; as well as balancing our family's time, making sure that everyone's needs be addressed.  A bulk of your message expressed your major concern over your other children's reactions and impact on their behavior too and your son's difficulties in regular school.  My husband and I are considering homeschooling for our daughters.  Based on our preliminary research/readings, we found out that among the advantages of homeschooling that appealed to us are 1)  it forces us to simplify our lives by setting the focus on the family (not having to deal with a lot of expectations),   2) the family gets into a schedule that fits the needs of the family and that's flexible enough, 3) siblings get to know each other more and learn to help one another willingly, 4) each one becomes his most productive self and becomes a true self-motivated learner.  We'll see soon enough if we can manage homeschooling on top of what we have in our hands right now. :)

 

You've done so much for your husband and your children and I congratulate you and all the parents of children with special needs who have risen up to the challenge.  I know that there are more questions coming up.  We need not answer all of them right away.  We just need to be patient and continue to nurture the love in our hearts for our kids and to continue to care for them the best way we can.  This is the one treasure that nobody can snatch away from our kids.  They are showered with more love than many (which I hope parents will not take for granted).  God, in his perfect goodness and generosity, will shower you with the strength, love and blessings which you will need to care for the "little ones" He has entrusted you with. :)

 

All the best!  Take care.

 

 

 

 

 
June 8, 2007, 12:09 am CDT

I just don't know how to help her

  I have written hear before and no one responded to my post. Please If u have any advice please do tell. I am lost. I have a great doughter who just truned 11 and she is mildly mently retarted and she has Juvenile diabetes. And the doc just told me to ride it out. I don't think thats whats best for her. She has behavior issues fits I guess. I know its not all due to the blood shuger and I don't know how to stop them. I have tried everything and if it does work it don't for long. we have tried counsling and well It wasn't the right one becouse it didn't work. We went and they put her in group but didn't work at all. Counsler didn't seem to care if it did or didn't. So please some one tell me something that I can find help or u have tried and worked for you and child.
 
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