Gifted Issues Discussion homepage Forums Twice Exceptional Latrophobia

Lori, you are showing your son how to deal with difficult things when you take care of your mother. You are showing him how to be proactive, and search for answers. There is no hiding from the fear of cancer taking your husbands health or life, but you showed him how to respond by caring for him, and facing it head on.
You are doing well is so many areas, with such a difficult task. So much of this you are not able to spare him from, but he does benefit from seeing you deal with pain, heartache, & fear. Does he get any benefit from seeing you get terribly upset going to a dentist? I'm not asking you to reply to that, because only you & your husband know what is best for your son, I'm just an outsider who only knows a tiny bit from what you've posted.

I do wish you well, and hope you get the answers you need soon.

Again, I would strongly suggest if you have not already done so that you consider treatment for anxiety for your son and for yourself. It is great he's trying to read about stuff but that's a really big list and he may benefit more from having someone to really give him personal help.

I don't suggest trying to hide big stuff like this from him like critically ill family members or his own disabilities. But, I don't see how that means he needs to sit and watch you shake at the dentist. I would strongly consider finding another place for him to be at these times because it is a real risk factor for increasing his anxiety.

I hope the referral mess gets straightened out. How frustrating though I'm afraid I'd say based on our experiences these sorts of mix ups are par for the course.

I would try to keep your expectations not too high for the evaluations. They are worth doing for sure, but in our experience there aren't always really clear cut treatments for hypotonia or dyspraxia. You may get what sounds like cliched advice like enroll the child in OT, karate, swimming, etc. This advice initially struck me as cliched, but down the road I will admit that it helped.


Please take this as advice from a fellow anxiety sufferer and hear what is intended to be a very kind tone ... Lots of people get terrible stuff to deal with and not all people suffer from that terrible stuff equally. You've got a heap of stuff on our plate. No question about that. Getting help for anxiety really can help. Therapy, meds, etc. all can help get a person through. If nothing else you are modeling for your kid that when you need help you ask for it.

Take care.

The dentist visit went surprisingly well. She took the time to explain what she was going to do to him before she did it and when he made jokes about what she was doing, she came right back with her own jokes and they both had me laughing. It is so good to see a medical professional who knows how to use humor and compassion with patients. The OT that my son got to see a total of six times was also like this. It was too bad that our insurance would not pay for any more OT.

We can't afford to pay for OT or anything else without insurance unless we take him out of piano and other activities and I don't think we want to do that.

I am trying to find a swimming instructor willing to give my son private lessons at the YMCA and we haven't found anyone yet. The YMCA people said there is someone who might be able to give him private lessons next month. Hopefully, my son won't have to wear a scoliosis brace 23 hours a day because I think it might make learning to swim when he already has a swimming phobia to deal with even more difficult.

We will find out next month after they take more X-rays if my son, who had sock problems and clothing tag problems will have to wear a brace. This is a child that I used to tell that he should be glad he isn't a girl because girls have to wear a bra and heels and he would never be able to tolerate it. I looked at pictures of scoliosis braces online and they look worse than I imagined--much worse than any bra--and you have to wear the brace at night. He has always had trouble falling asleep and I can't imagine trying to sleep while wearing a brace. So this is another medical related worry that is in the back of my mind.

I read something in the newspaper this morning that I know applies to me. It was advice from the doctor who wrote the book "Gifted Hands: The Ben Carson Story." He said "Mindset affects health. Danger from fear, stress, anger and not believing in yourself mean people need to change their mindsets to improve their lives."

It is just hard sometimes because I know I am at an increased risk for stroke, which sometimes leads to dementia, and also cancer and diabetes because of my family history. I worry about leaving my son alone before he is ready to be alone in a place where he would be denied an appropriate education because he is twice exceptional, where people believe the best way to raise a boy is closer to the Spartan method of child rearing than Dr. Sears and that all boys must be physically strong and play football.

I am trying to be proactive about my health and I will model that behavior for my son. Asking questions about possible side effects and educating yourself is a very smart thing to do and I support my son in asking questions. I will continue to look for more information about these health issues because there are things I can do to lower my risk, and my son's, especially by keeping our weight normal and exercising. It is the people in my family who were obese that had most of the health problems.

We can eat more fruits and vegetables. We bought a juicer and my son for the first time decided he wanted to plant his own garden. My dad let him have his own area to plant and helped him do it.

I can limit my time and definitely my son's time around relatives or anyone else who wants to say things about my mother's condition and behaviors that she has no control over and hang on to the memories of the way she was before she became ill. She would never have wanted her legacy to be one that causes fear and anxiety. Her legacy should be and is her love of learning that she managed to pass on to her grandson even though he was only four when she suddenly became ill and had no memory of who he was even though he lived next door and we saw her every day.

I can limit my son's time and my time around people, especially adults, who are bullies.

My dad takes care of my mother 24 hours a day, taking care of her every need as you would have to do for an infant and he doesn't have the anxiety that I have. After working and saving his money for years, with the expectation that there would be some "golden years" there were none because of my mother's illness, but he doesn't complain. I asked him for his advice in dealing with difficult things and he told us that the fact is that it is a cold cruel world and you just have to "improvise and adjust" but you also have to be thankful for what you have. It could be worse.

And then he smiled and said something else. I think he knows that I was always a little sensitive about not feeling as smart as my younger sister and my artist uncle and my mother who only took a few college classes but could answer way more Jeopardy questions than anyone else I knew because she read all the time, and now I am homeschooling a child who learns so differently from me and is so much smarter than I ever was and I often feel that I don't know if I am doing the right thing. My dad said, "At least you have common sense and some of those smart people in our family don't." Then he told my son that he thought he had more common sense than his adult sister and he might need to help her once in a while. My son said he already knew this and he was already helping her and he is.

So thanks everyone, I am feeling better today. I am using my common sense to improvise when dealing with life challenges and I will continue to work on adjusting to the difficulties. I did get a prescription for anxiety meds that I can use if I have to.

Would the insurance pay for PT or for therapy with a psychologist? Often insurance is less likely to cover OT than they are PT. We found PT more helpful than OT for hypotonia. Really with a kid as old as your son, once you get set up on a plan he may be able to accomplish as much at home with regular exercises as he could in therapy anyway. Another idea might be to look around a bit in the homeschooling community for an athletic high school age kid who might like to teach swimming or work on some other physical activities too. That may be inexpensive and highly motivating too.

My sympathies on the possible scoliosis cast. I wouldn't underestimate the possibility of a kid rising to a challenge or getting out the other side a stronger person. I know the situation is not what you'd choose but he may surprise you by handling it better than you expect especially because he's a smart kid and he is old enough to understand the whys if he needs the cast. That can go a long to helping with the rest.

My husband, son and I just got back from visiting my niece who just had a new baby girl and she is perfect, but it brought back memories. My sister, who videotaped my son's birth was there and we had a chance to talk about our memories of my son's birth. She remembered both a nurse and the doctor telling her to turn off her video camera because my son's heartbeat had slowed way down and my husband said it stopped right before the doctor told me we have to get the baby out NOW. But they couldn't get him out right away because they had trouble with the some of their equipment and the doctor ended up having to use forceps to get him out. I had my labor induced with pitocin and it seemed everything was going wrong toward the end. The cord was wrapped around his neck but I thought everything was finally okay when they got him out, but he was a floppy baby. For some reason the doctors he saw at the military base did not authorize OT or PT or anything even after we showed the doctor the results of testing showing he had a 50 percent delay in gross motor skills and his muscles were weak. He walked at 18 1/2 months, not very far, but he walked and it seemed like his doctors thought he was okay. Again I trusted the doctors. I can't help but wonder if my son's hypotonia and dyspraxia are my fault because I did not ask about possible side effects of having my labor induced and just went along with whatever the doctor said. I was one day past my due date and I totally trusted the doctor. I didn't ask questions and I never looked up any medical advice online. I do now, probably too much, but my sister is the same way after seeing what happened to our mother.

I think it will always be hard for me to trust doctors after some of the problems we have had and I am now wondering about the necessity of wearing a brace, even if they recommend it. My dad said he was told recently that he has scoliosis but it never bothered him, maybe because he didn't know he had it. My aunt has it too and it never bothered her and you can't tell by looking at her that she has it. And when I read that too many X-rays can be bad and they want to do all these X-rays to see if there is any change, I wonder if this could be doing him more harm than good.

I don't know why it is so hard to get our insurance to pay for PT or OT but it has always been a problem for us.

My son has had a few athletic high school age kids make fun of him and I don't think he would be willing to work with a kid.

If he's had negative experiences with older kids that would be all the more reason in my opinion to pursue that option. It isn't a healthy thing for a person to walk around believing whole categories of people (teenagers, athletic people, etc.) are unkind. That isn't to say I'd pick any random stranger but I would start talking it up with friends and be open for opportunities.

Spending time quarterbacking the past kind of puts you in control of feeling like you are doing something but in reality it won't improve the present. A huge percentage of births in this country now include induced labor and I'd hardly suggest all of those women are to blame or deserving of having disabled kids. I understand the temptation to look for an answer in the past but I'd keep a close on it because too much of that can be a sign of depression.

Many insurance plans won't pay for sensory therapy, but most will pay for kids who have hypotonia or more significant motor disabilities. It may take some fighting as insurance will sometimes initially deny claims that eventually they will pay. Usually the office staff at clinics should have good ideas for how to code and submit claims to get them paid. That said, again in our experience other activities (karate, swimming, horseback riding) accomplish as much or more than OT or PT for hypotonia. With all of it I would be realistic though and aim for improving the quality of life he has with some acceptance that not everyone is dealt the same hand.

How do you put a child a child in a karate class with non-dyspraxic kids? How do you get the instructor to understand your child's disability is causing his difficulty with doing some of the activities and not laziness when he looks totally normal and seems so smart?

How can I put a very bright, sensitive almost 11 year old child in a group swimming class with mostly six and seven year olds year after year without causing self esteem issues?

It is very hard to find private lessons for anything where we live and private lessons are very expensive if we can find them.

He knows all athletic teenagers are not unkind. His cousin, who gets a lot of attention for his ability on the football field, usually takes the time to talk to us in spite of his buddies making fun of his cousin. My son thinks his cousin probably lost some cool points for letting his friends know that he is related to such a geek. His cousin was not surprised at some of the comments his football buddies made about my son and says his friends "are just that way."

His acting teacher was "just that way" too and thought it was okay to tease him about his difficulties by telling all the other kids in the group to be careful around him because he was really several years younger than his actual age. This is what I got for trying to explain his disability. I told her if might be easier, when they choreographed dance routines, to think of him as a child several years younger. I never imagined that she would say something like this to the group. But this is where my son learned to deal with adult bullies and he can handle them better than I can.

I think a majority of the people in my small town are very nice people, unless you are different from them or disagree with them about anything. It is one of those facts of life that I didn't discover until I was an adult and my son had to deal with this as a child.

I do continue to look for reasons why my son has this disability because my daughter will probably have children in a few years and I want her to avoid taking any risks with the birth of her children. I am not depressed. In some ways I think having his disability has made my son more mature, with more empathy, and even smarter in some ways than average kids. I want to know if there was a way to prevent what happened to my son so it can be avoided with my future grandchildren.

I learned that the use of pitocin increases the likelihood of depressed fetal heart rate patters and increases the chances of fetal distress due to decreased oxygen availability. This doesn't happen to everyone, but I would never have risked my son's life if I had known there was such a risk. The cord was wrapped tightly around his neck also and I know that lots of babies have no trouble at all with that also. Same thing with the forceps delivery. But one of my son's doctors thought "possible mild birth asphyxia" might have had something to do with his problems and I want to know if my daughter can avoid having some of these same issues when she has children.

I have no idea what the resources are like in your area but I believe there are good and helpful people everywhere and it is a matter of putting forth effort until you find them. I understand it is easy to get discouraged if he's had negative experiences but I would do what you can to model keeping a positive attitude and being open to people being kind and opportunities to be successful.

We are dealing with similar diagnoses and we've had success with the kinds of activities that neurologists would typically suggest. I'm unclear if you are starting from scratch at 11 or if he's already been involved in activities.

Things that have worked for us: 1. family activities - walking, working out on the playground, yard work, playing catch. Ultimately the goal in life is to be active and this is especially important for people with low muscle tone. 2. Noncompetitive activities with people of different ages instead of competitive activities with same age peers. Community activities like yoga, dance, etc. can be good 3. Nontraditional teachers including teenagers - cast the net wide and ask friends for help.

My suggestion if you have not already done so is to visit the director the Y and explain your situation and see if they've got an idea. In many communities an 11 or 12 year old can go in the adult beginners class. Or, perhaps they can find a college student swimmer who can teach a lesson. Also, let people you know from homeschooling, church, your neighborhood, work, etc. know that you are looking for help.

Finally, as you consider birth concerns you may want to check on the rates of these interventions. Last I heard pitocin was used in more than half of births so I would not assume causation there. For what it is worth we are also coping with disabilities and I had natural childbirth. There are no guarantees in life other than there is no guarantee.

Good luck with the appointment and everything else.