Topic : Raising a Special Needs Child

Hi Heidi, it sounds like you've had a lot of challenges.  I wanted to tell you that I have Adult CF.  I'm 45 yrs!  I hadn't even known there was an Adult CF and none of my drs. did, so it took until I was about 40 to think to send my blood to a genetics lab.  Altho when they emptied my lungs that had a big clue with the pseudomonis.  Do your daughters use Tobi?  Do you deal with Cystic Fibrosis Services Pharmacy?  They are great because they serve as your advocate, too, in getting ins. to help with the huge costs and they don't hassle you for money.  Insurance is such a hassle and we don't need that on top of everything else. 

  

I only have one child, who we adopted when he was 7 weeks old.  He's 11 yrs. and was diagnosed w/ ADHD when 6 and then Aspergers when he was 7.  We've tried special diets & medications and finally found glyconutrition that has been the biggest help for him.  I homeschool him.  Now I need to go do school!  Debbi 

I would also like to see a show on NonVerbal Learning Disorder (NVLD) and Aspergers children!    The hardest thing to deal with are family members who don't believe that there is anything wrong with our son since he does well in school.  When people think of learning disability / difference they immediately think of academic ability and forget that there are many skills that you also develop outside the classroom!   To say that my son struggles in terms of interpersonal relations, is an understatement.  His NVLD is subtle but profound.  He simply does not get it.  My heart breaks because you can get through life without a university education or without an A+ in reading, BUT try and get through life without interpersonal skills... without friends ... without a life partner.   Very sad indeed.

Since these are relatively new diagnoses (within the last 5-10 years??), Dr. Phil may actually be a front-runner in getting the word out on these poorly understood children.   

Dr. Phil, please consider that these children often fall between the cracks - there's support for children with classic LDs or physical differences but very little for the child that freaks out with transitions, group settings, and over stimulation / sensory integration.  If you do a show, I'll make darn sure that my mother-in-law watches!

Hi, My grandson is 4 with aspergers/ADHD. My daughter has really fought giving him meds, but she finally had to. He is aggressive and has a mean streak at home. He is on them about 2 weeks. He still has rough times and has to go to time out, but the transition to time out is easier. He has a 2 yr. old brother. When he cries, my grandson can't stand it. It is one of the times he gets mean. He had auditory intergration at OT for that, but it is still hard for him. I haven't really heard anyone talk about their children being fixated on anything. My grandson has liked pipes, tubes and vacuums since he saw the vacuum on Teletubbies on television. I work with special ed pre-K and I had one child that only wanted dinosaurs. He is now 11 yrs. old and still loves them. We are so worried about him. He was in special ed and is now in a headstart pre-k but he still has an IEP. He will not be labeled till he is 6. My daughter is so frustrated because she feels even though he has seen a neurologist and got a diagnosis, people don't see it. Sure, he is not in a wheel chair. People really need to to know more about this, especially regular ed teachers.

I think the hardest job on the planet is to be the parent of a special needs child.  I have been teaching special needs students at the high school level and can't even imagine what the families go through as each major milestone such as graduation, and turning 21 comes around.  The past 2 years I have worked with an young man with Asperger's.  He is quite a challenge, but we love him to death!  Recently, one of the specialist I work with, gave me a book to read and I have found it very helpful.  It is by Jed E. Baker and is titled "Social Skills Training for Children and Adolescents with Asperger Syndrome."  I liked it so much I got a copy myself from Amazon.  I don't know how old your son is, and don't know where you live, but we have a Department of Developmental Disabilities which is under HHS for our state.  They provide service coordination etc.. for individuals with special needs.  Maybe an agency or group home could help provide some support services?  Hang in there and God bless you and your family.  Beth

I have a 2.5 year old son with Sensory Processing Disorder (SPD).  I have just recenlty learned about this disorder within the last 6 months and am having a difficult time connecting with other parents whose children also have it.  I am also having a VERY difficult time finding the right help for my son.  I do know that many children who have autism, aspergers, etc, have SPD as a "symptom".  My son does not have any of those challenges, he just has SPD.  And from what I understand, SPD is not really recognized by the medical community nor the school systems.  I don't know if this is just the area of the country where I live or if it is everywhere.  But it seems like there is a major lack of awareness about this disorder and it is keeping me from being able to get my son help! 

  

My son is in the Early Intervention Program because of a speech delay.  However through the process of evaluations with EI, and through my own research, I determined that SPD was what we were dealing with.  Occupational Therapy is what is prescribed to help SPD kids, however I have not found an OT within EI who knows anything about SPD.  So, after cutting through all the red tape, I finally got them to evaluate him specifically for SPD.  An OT who knows a little bit about it, came to our house, observed him and asked me a bunch of quesitons on a form.  The evaluation results were that my son is ranked "severe" SPD in 4 out of 5 categories:  oral motor, auditory, visual and tactile.   

  

SPD, for those who do not know, is the inability to process sensory input.  The brain/central nervous system cannot understand the input that is received through the senses and gives mixed messages to the body.  So, as a result, a child with SPD can have major behavioral problems like tantrums and meltdowns, aggression, disruptive outbursts, etc.   

  

My son does have a bit of these behaviors, however his main reaction to sensations that he cannot process.....is to vomit.  Now this is where it gets interesting!  Because vomiting becomes a medical issue!  So we've seen a pediatric gastroenterologist who did an endoscopy to see what was going on inside.  The results were that nothing is wrong medically as far as he can see (he also did food allergy testing).  However if my son continues to vomit the way he does, isn't he going to damage his esophogus?  I mean, its pretty bad.  I keep a journal of how/when/why he vomits.  I have buckets all over my house to avoid messes.  I take barf bags with me when we go out to avoid embarrassment in stores and at restaurants.   It is absolutely interfering with our life and they way we live.  We are constantly on edge and ready, should he throw up.  We taught him sign language to help with his speech delay, and the sign for "throw up" was one of the 1st signs we taught him!   

  

So what I am hoping for is this:  #1.  Dr. Phil, please do a show about SPD to raise awareness about this disorder.   #2.  Are there other parents out there dealing with this disorder?  #3.  If so, what are you doing to get your child the help he/she needs?   

  

I keep running into brick walls and I need help. 

  

Sarah 

Hi Deb. I have been teaching life and vocational skills to special needs students at a large high school for 21 years, and  I have been working with a young man with Asperger's for the past 2 years.  He is quite a challenge, and has those meltdowns just like your sons'.  Recently I bought a book called "Social Skills Training for Children and Adolescents with Asperger Syndrome."  It has been a tremendous help in understanding how MJ's brain works along with providing information on how best to teach social skills.  Hope this helps. 

Hi Jules, 

  

I understand what you are going through exactly.  My son is very active as well but like your son very loving and caring.  He also always goes over to people if they are crying or hurt to make sure they are ok.(very sensetive)  Always has a smile on his face and very smart.  Like your son he loves trains(Thomas).   I like you do not want people to feel sorry for my son but to admire him for his loving  spirt.  Girl keep the faith.  I know our sons can be our do anything they want to in life.  God has great plans for them both.   I often write thank you letters to my son's teachers, coach and doctors to let them know how much I appreciate their inspiration and guidance.  I once wrote the the school board for my son's school that they make a difference in his life.  I told them that when he becames President some day.  We will all look back and say I always knew he could, it just took a teacher believe in him and care.  Like that teacher keep believing as the wonderful mother he knows you are to him. 

I also want to tell you my son turns 6 at the end of Feb.  It seems as though we have both been on the same journey. 

  

I would love to hear from you again. 

Love Mal 

My Aspie son has been immersed in sensory types of interventions - that being said - I researched and researched looking for ways to help my son - we found a school that had an "OT Lab" where kids with many different disabilities learning and otherwise could come go through their system they had set up - not only did it help them destress and therefore focus but also helped them in developing those physical areas they are lacking in.  

  

What I learned is a label can identify a need and many labels have similar needs - address the need - how does it interfere with life and learning - define those and then address them.  

  

I turned my home into a "OT lab" for many years - he sat on a huge ball at his desk - improved his balance and when he was excited playing a game or stressed working on homework he could use it as a modulator to help him cope with his environment and life. THis is the sensory integration - movement and touch are often affected - sensory. I cannot praise the efforts of one innovative professional who sacrificed to make sure children like my son could have a place to learn and have hope. 

  

Modulators are key - so were the programs - we had the Listening program and Samonas and also things like Fast ForWord. OT and speech therapies are so key - learning basics like pragmatics that we take for granted and social skills! 

  

So we had big rubber bouncy balls to sit and lay on- swings - marbles and other hand manipulatives and silly putty - stress balls for hands (hackysacks are great) - these modulators are lifesavers. 

  

Step by step and day by day my son was loving assisted in catching up in skills - some he may never achieve but he has come so far in such a short period of time. 

  

I don't know if anyone really reads this - but I fought hard to help my son - and I found I had to change our home to make sure the interventions work. Workign with the school and the professionals takes a lot of dedication and time and money but in the end my son is so much better off! 

  

Hope this helps someone - K 

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 

I need some advice.  I have a 10 year old boy with ADHD and Aspergers. This year I am home schooling him, and it is extremely difficult.  However, the real problem is that my family and I have no support groups or know anyone else who has an autistic/aspergers child because we live in a rural community.  My son has a lot of rage, and meltdowns.  When he went to public school and now while I home school him he will refuse to do work that involves writing.  He will get frustrated and refuse to do math frequently as well.  I don't know what battles I should be taking on with him and which ones I should not take on.  My other family members think that I let my son dominate me at times. They think that he knows what he is doing and is purposely having meltdowns and acts out because that way he can get what he wants.  I have been taking care of my son and his 12 year old ADHD brother by myself for the last few years because my husband was in the military and deployed overseas.  He just got home last month and now we are temporarily staying with my parents.  I don't know if I'm right in thinking that these behaviors are aspects of ADHD and Aspergers, so therefore I should try to choose my battles, or if my family members are right and that my son is just manipulating me.  I have not been able to find any books on this in our small town libraries and with my husband and I newly unemployed I don't have money to buy any right now.  I don't know where to go for help.