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Feeling isolated and misunderstood

I have never done this before, but I have been craving some solidarity from other parents!!  I have two boys 14 and 10.  My oldest is the “go with the flow” kind of kid, and my 10 yr old…well lets just say he jumps first asks questions later.  He was diagnosed at age 7 with ADHD, and we started on the road of meds.  Fast track to now…because of an overriding medical condition, pseudotumor cerebri, that developed in the fall of 2013 he was restricted from any ADHD meds, and sports.  He sees a therapist once a week to help with behavior.  It saddens me that his list of friends has become almost obsolete.  The party invites have near diminished, and the play dates are very rare!! Even when we as a family are invited somewhere I feel I sit on pins and needles waiting for him to do something so totally him, but frowned upon by the majority. I can honestly say I have NEVER felt more isolated than I do right now.  He tells me no one plays with him at recess. I ask him how that makes him feel…his response…their loss!! LOL.  Though I am not sure I should believe him:(

Replies

I feel your pain!  My oldest sounds very similar to your oldest.  My 11 year old causes me to feel the same as you and she does take meds.  Just starting with this school year - 5th grade - we took her out of the public school and put her in a private Christian school - for multiple reasons - social and academic.  The smaller private Christian setting has been a huge blessing for her.  Class sizes are about half of the public school, the teacher has an aid in the classroom and the Christian values that are taught daily really make a huge difference in the way the kids treat each other.  The aid in the classroom there (which was never provided in the public school) is very helpful to managing my daughter’s ADD.  My daughter has been so much happier and she has made some friends at the new school (she really only had 1 in the huge public school she was at and she was bullied too).  She no longer just swings by herself at recess like she did at her old school.  She goes to this school on a scholarship that is provided by the State of Ohio for kids that have certain disabilities to use to go to private schools. The disability that qualifies her is a hearing impairment but I know that there are other things that qualify a kid for a scholarship… autism, emotional problems, etc. We didn’t even know about the scholarship until we started looking into private education for her and it was a pleasant surprise.

As far as going to events as a family and being nervous about your child’s behavior, I have the same feeling.  I hate it!!!!  I guess it is good to know you are not alone right?  Good luck with everything!

Posted by LizzieD on May 08, 2014 at 10:37pm

I feel you! There is a support group here that never meets and the one time they did, it wasn’t very helpful. I feel alone a lot of the time. People can’t understand what it is like. We have to love our kids and assure them it will get better. They might not be the kids with a ton of friends but having 2 or 3 who understand and have patience is enough.

I am sending you a huge hug.

Posted by momodoodle on May 08, 2014 at 10:37pm

THANK YOU!!!!  To add to the plate we had to hire an advocate for him.  Back in December I naively allowed an IEP re-eval meeting, and was blindsided when they approached me about calling in the ED(emotionally disturbed) unit , so someone could offer the teacher more “advice”.  That was lingo to me and my husband, they were starting the process of putting him another school.  We were floored.  He was in the hospital in September, October, November…He had been through so much, and they want to call an ED unit.  I will let your imagination go with the choice expletives that whipped through my brain:)  His advocate has been our knight in shining armor!! Our school district wants us to look at their options, but I am still waiting to hear from them.  I did look at a private school today. It caters to kids with many challenges, classroom size is less then 10, kids have “movement” breaks, and they have lots of resources and staff contains OT and speech.

Posted by mamaloz on May 08, 2014 at 10:53pm

I really understand what you are feeling.  My youngest son, 11 years and in 6th grade, has Asperger’s and also ADHD.  He is one of 12 kids in his class, and while that is good for academics, it is not good socially If you are one of the kids who is being shunned.  My son is never invited to do anything with his classmates, although he did get invited to a birthday party once this past year.  His classmates basically ignore him.  I went on a field trip yesterday and saw first hand what he goes through every day.  Even some of the parents want nothing to do with us.  It is so sad.  On the bright side, he does have a wonderful teacher and a lot of adult support.  And he has been doing better in general lately.  6th grade is tough, socially, though, and worse if you are not like most other kids.  I agree that lately I have just wanted to feel a connection with other parents.

Posted by americangothic95 on May 09, 2014 at 4:59am

Hi mamloz!

These situations really hurt a momma’s heart! I know how you feel.

Does your son participate in any activities outside of school? It seems that getting him involved in group activities that he’s really passionate about and really enjoys will give him the opportunity to meet kids with similar interests, allowing the difficult task of making friends a bit easier. Some clubs will even have a higher percentage of “quirky” kids in them, giving him an even greater chance of relating.

As for the social issues at school, reach out to the guidance counselor and his teachers. It’s not okay for him to be alone every day at recess (unless that’s really what he wants). Ask them to help him connect with another student at recess. We have had teachers help with this during recess and also had guidance counselors put together lunch with them and one other student my son wanted to get to know. It is helpful when they pick a student that may be shy or quirky or the like. My son has picked kids he most annoys at times, and a lunch group can’t overcome that. wink

There are some great articles on ADDitudeMag.com on helping children with ADHD make friends:
http://www.additudemag.com/adhd/article/924.html
http://www.additudemag.com/adhd/article/5401.html
http://www.additudemag.com/adhd/article/2512.html

And this webinar archive: http://www.additudemag.com/RCLP/sub/10656.html

Penny
ADDconnect Moderator & Mom to Tween Boy with ADHD and LDs

Posted by adhdmomma on May 09, 2014 at 4:34pm

I feel your pain.  We are in the beginning stages of having my son diagnosed with ADD/ADHD.  I have known for a couple of years that he was different from other boys in his age group so finding friends for him has been difficult.  I had the pain of watching two of my friends (one of which is a grade school teacher) sons tell him that he couldn’t play with them at the playground yesterday.  I was upset and maybe shouldn’t have voiced it, but these women were oblivious to what their kids were saying to my son and I wasn’t going to just sit back and watch him be bullied and left to cry.  Of course the boys acted like they were innocent and their mothers got the ‘not my child’ demeanor.  So now I feel I even need to evaluate who I am friends with and not just my son’s friends.  Needless to say, this is turning out to be a lonely road we’re heading down. 

I hope you find the support you need for your son as well as yourself.

Posted by Tivo2012 on May 14, 2014 at 9:32am

@ Tivo2012 an @americangothic95 My heart goes out to you as well.  How old is your son?  I have, and am learning from my son what matters, and what does not.  I am trying very hard to embrace his quirks, and ignore the ever dreaded eye rolling!!  It is so hard sometimes though, because his social skills are a bit lacking, and his “filter” for just blurting things out is set on low:)  I have desperately been seeking a support group, to vent with, and let the kids hang.  But so far I am unsuccessful.  Sometimes I just want to shake some people, and say “you don’t know our story, it is long, complicated and difficult at times.  So don’t judge!!”  Good for you, being your sons advocate.  I am ashamed to say there have been times I disciplined my son, based on others accounts of a situation versus his side of the story.  That has come to an end though.  I am on the same road…so don’t feel to alone:))))

Posted by mamaloz on May 14, 2014 at 6:57pm

I too feel this pain.  It hurts so much to know how much your child is struggling in school.
My daughter (9 1/2) has Anxiety & ADHD such a big heart but doesn’t relate well with her peers.  We’ve done social skills groups and she still meets weekly with a therapist.
The other girls are now getting worse with excluding her and antagonizing to get reaction. I hate hearing how she’s always the last one picked for reading, math groups, gym partners.  Recess and lunch are the worst!
I’d love to put her in a private school but its just too expensive for us. We did do sleep away camp (rec from dr.) and she came back so happy and full of confidence, we were overjoyed.  Unfortunately it only took until October for it all to fall apart in school. 
Stay strong, its good to know you have support here.  glad I found these boards

Posted by JAJ on May 15, 2014 at 6:31am

I also feel your pains. My son was just diagnosed with ADHD and ODD. He can be a little impulsive to say the least! I’m a single mother of him which is turning 8 and a 3yr old. I often have to fight with him to get him out the door to even have dinner with friends or family. I was brought up that your children are a reflection of you and your parenting so we live as hermits at times because I know its going to be a fight to go anywhere unless he really wants to go. Then there is the emotional battle of the tantrums every single time. Or my favorite the continuous asking if we can go home yet. I don’t have any friends that have this amount of issues so they can not relate the frustration.

Posted by txmama2 on May 15, 2014 at 10:43pm

@txmama2, my son is 6 and has just been diagnosed by his therapist with ADHD.  We are still waiting to meet with the pediatric neurology group to get a complete diagnosis since his therapist believes he might also have sensory integration dysfunction.  Needless to say his behavior in unpredictable and the tantrums were daily.  His therapist actually recommended the 1-2-3 Magic book and DVD series to us.  I have to say that while I have been always skeptical to these different parenting programs that it has been working for us!  This had been the first week where I have been able to curb his tantrums.  We have also completely changed his diet which might contribute to the behavior change.  I would highly check with your local library for the book I mentioned.  It is really simple and easy to follow.  Good luck!

Posted by Tivo2012 on May 15, 2014 at 10:55pm

I am so sorry to hear this hun. Pseudotumor Cerebri is a very poorly understood disease, but it is treatable. I do understand why they have to keep him from ADHD meds.

My son also has ADHD,  he’s very good academically, and very poor socially. I hope your older son is understanding of the situation, because he can be your kid’s best ally.

This is the first reply I give in this group. I do want to let you know that I am in the Biotech field, understand the scientific nature of most of these therapies and with all the knowledge I’ve gathered, I still feel often completely hopeless.

Perhaps diet can play a role. I have not done the appropriate research but firmly believe that diet plays a part in any therapy. Other than that, I will look into
Pseudotumor Cerebri in case any novel treatments are in the horizon.

Posted by JockDad on May 16, 2014 at 3:51am

Hi there just to let you know that I totally relate to your pain and understands how you feel, I have a daughter that just turned 16 this month, she is in grade 10 now, and always has been struggling at school, a year ago she was finally diagnosed with a severe Anxiety, ADD inattentive sub-type and a learning disabilities. Her social skills are poor and have a hard time making friends. Other girls in her school are excluding her, and she is always the last one to get pick for any school group project or activities, never get invited to any parties or girls get together. When she was in grade 5 she was severely bullied by 13 grade 7 girls. it broke my heart watching her having anxiety attacks because of the impact from previous experiences. She’s in private school, it help a little bit but cause us financial difficulties. I am just thankful that she is a very well mannered 16 years old girl with a very big heart, loves going to school to learn despite of her disorder. All she wanted is to just get accepted by others for who she is, lucky enough our family is surrounded with all wonderful friends that supports and understands the situations. When she was finally diagnosed, I tried explaining to her what kind of disorder it is and I always educate her, and even told her to read about her disorder so she knows how to help herself. She is very disorganized and has no concept in time, I still help her with most her home works and projects, because she is the queen of procrastinating. she has a tutor that help her with Math and she also attend tutorial offer by the teachers at her school an hour a day. Honestly it is so hard to live with someone like my daughter, but I know that I can’t give up on her, I have to advocate for her for as long as she needs me. Just keep in mind that you are not alone, there are many of us, don’t give up, and I will pray for you and your family, good luck with your son and may GOD guide him always.

Posted by wisdom on May 25, 2014 at 6:39am

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