Need Someone Else to Talk with About Special Needs Children.

DISTRICT 622 SUPPORT GROUP

For parents & others involved in the lives of children with AD/HD. Meets on the 2nd Mondays (Oct-Apr) from 6:30pm-8:30pm; District Educ Ctr, N St. Paul: Ms Lilja, ###-###-####. Childcare available with 1-wk notice; call ###-###-####

Hi M.
I have 2 children that have FAS (fetal alcohol syndrome) and one of them has ODD and I have a 7 yr old with ADHD and RAD and one child with severly cognitively delayed. So if you ever want to talk I know how it feels. My e-mail is ____@____.com

J.

Hi M.:

I think that ADHD is real.....I also think that doctors are just scratching the surface on treatment for this disorder....I too have somewhat of an attention deficit and my whole life have had to learn to deal with it.

I'm not for treatment of medication....however, it depends on the severity of the disorder.

Does your son receive special training or education or maybe in home therapy???

People can be very cruel without knowing it.....maybe the best way to handle this is address it immediately to the individual that says something.....such as.... ADHD is such an uncharted territory it's difficult for people to understand and just nod your head. And try not to take comments too personal...I know that's very difficult, but people just don't know and a lot of Doctors don't know about ADHD.......
Just educate yourself about the disorder as much as you can....read everything you can get your hands on and search GOOGLE and retrieve as much info as possible about the disorder.

I do hope I've helped M.

Blessings

~K.

Hi:

I have 7 kids; 3 of which have special needs: 1 has FAS, ADD, and LD; 1 has FAS, ADHD (severe, combined type), PDD, OCD, SID/PD, and Mixed Mood Anxiety Disorder; and 1 has EOBP and ADD. Family, friends, and school can be difficult to deal with. The best advice I can give is: do what YOU know and feel is right for your child and the rest of the world can take a flying leap. YOU are your child's best resource and advocate. Develop a thick skin (at least as best you can), and everytime someone makes a "hurtful" comment say to yourself "I know I am being the best mom I can be to my child". It is hard at first, but it does get easier. You are also going through a stage of anger and relief that takes time to get through. Anger that your child has to deal with this and relief that there is a "name" for why your child acts the way that he does. All parents with special needs go through this and time does help (although these feeling do rear their ugly heads periodically; especially when the school or a particular family member is being super stubborn).

If you need to talk personally just to bounce thoughts, ideas, or just to vent, please feel free to contact me at ____@____.com

P.S. Make sure you are taking care of yourself, too. Raising kids with special needs is hard work :)

Starr

Hello. My friend has a 7 year old boy with ADHD and she also has ADD. She has had a lot of problems with people telling her she needs to get after her boy. That he is trouble etc.
He had a lot of problems in school last year. The teachers would get upset with him because he wouldn't sit for long. They wanted the mother to hold her son back a year because they said he was having too many problems.
She told me he was behind on learning to read. It's because they didn't take the time to teach him. The teachers were so busy getting after him and all that time no one ever sat with him one on one to teach him anything.
So she is not sending him back to school. She is going to homeschool him she has had enough of the school system here.
Over the summer the mother worked with him on learning to read and he is learning a lot more from being home then he was in school who people thought he was problem child.
The mother also refuses to let her son have meds. She did try it at one time and said never again.
Her son is a very very smart boy. We love hanging out with our friends. He does wear out my kids in a good way. teehee They will take long naps after playing together. :)
He is a great kid. I love his smiles. Oh and he knows how to sign. He is hearing but his mom is deaf.
I was very upset when my friend told me what was going on in school and how hard it was for him.
Please don't let anyone ever tell you that you are a bad parent or make you feel bad.
You are doing the best that you can. Repeat after me ok.....
I'M A GREAT MOM...... :)

M.
Mom to a 4yr old hearing, 2year hoh and a 1yr maybe hard of hearing.

Hi M.,
I have a son who is now 11 that was diagnosed at 4 with ADHD. I sought out help when he was a toddler because his temper tantrums were so bad (lasting 45 min at times) that I didn’t know what else to do. They told me to hold him on my lap in time out and not to give in. He would get so worked up that he would vomit so after doing it for a week I stopped and ignored his tantrums. It seemed to get a little better unless it was something like leaving Mc Donald’s Play area or somewhere else he really liked or an unexpected change of plans or routine. I now look back and remember him crying for four hours straight on trips to our in-laws as an infant because he was being restrained in the car seat. He has also always been sensitive to bright light mostly sun light, tags on his cloths and loud noises. When I would vacuum he would always scream or make noises, almost as if he were trying to be louder than the vacuum noise. As he has gotten older his anger has become an issue and he also has been diagnosed with depression and anxiety. Very common they almost seem to go hand in hand with ADHD.
I know how you feel I cried myself to sleep many nights when he was in first grade because of all the med changes trying to find the one that worked for him so that he could be a happier little boy. One wasn’t working the next turned him into a little boy with no emotion and the next made him seem worse! I was so frustrated that I said enough and had him taken off all meds to see if we could find a way to help him with a positive behavioral plan. Then no one wanted to play with him! So back to the meds and crying myself to sleep until finely we found one that fit and I cried because I finely saw his beautiful smile and heard him laugh again:0)! He did much better in school and had many more friends but at times still just didn’t seem happy. He would explain it as feeling homesick. The doctor put him on another med along with the ADHD med and is now doing much better, he still has his ups and downs but they seem much more normal (ha- what’s that) . It breaks my heart because he is actually a very very sensitive boy and has a very kind heart,( this past winter he helped a little old lady that had slipped in the snow bank while getting her mail when all of the other kids just laughed and walked on. He had tears in his eyes when he told me what had happened.) but he sometimes makes bad choices because he doesn’t think of consequences to his actions or is just simply misunderstood. They now think he might have onset of bi-polar. I’m to the point that I’m afraid to take him to his appointments for fear of yet another drug.
NO we are not bad parents, actually quite the contrary WE ARE EXCEPTIONAL PARENTS, we are FANOMINAL PARENTS!
Shower your little one with hugs-n-kisses and tell him that he is the smartest neatest kid you know. That’s what they really need because for most of there waking hours they feel like they can do nothing right.
As you can see I am anxious to have some one to chat with too.

Great big hugs to a terrific mom and dad!
T.

You could look at Fraser.org I'm not sure if they have parent groups for children with ADHD but they have a ton of resources available for children with special needs and probably do have some parent groups for children with special needs or could help you locate them.

Hang in there, it sounds like you are trying to do everything you can for your child-just remember there are a lot of ignorant people in this world. Your child is blessed to have a parent who cares so much.

Where at in MN do you live? My daughter was recently diagnosed with moderate to sever anxiety and possible bipolar. They initially thought she had ADHD but have since kinda ruled it out. I am in the process of starting a support group for parents of children with emotional and behvior issues. I have found that alot of time because others don't take the time to educate themselves on these disorders they see children who suffer with these issues as behavior problems and discourage their kids from playing with them. By the grac of god I happen to have friends whose own children are in the same boat as my daughter and she goes to a school that is welcoming and openminded to children with her issues so she has lucked out but I still want to expand her network of friends and I want to get more support from other parents out their as my daughter has just recently been diagnosed with all this.

M.-
My daughter started having some issues regarding her feelings toward her father (we are divorced) and her step-mom so I pushed for her to see a psychologist or counsler. She has been going to the a psychologist since November 2005. However once first grade started, behavioral problems ensued. So the therapist then worked on those issues. Toward the end of the school year is when the school finally got on board about testing her for possible ADD and/or anxiety. We did the neuropsychological testing in which the diagnosis is ADD with anxiety. The school had wondered if she had gotten everything out of first grade, if it needed to be repeated. The person who did the testing and the school's testing showed that she got everything out of first grade and it was not beneficial to repeat, it would actually set her back. This year is second grade, everything is in place for help for her at school, I spoke with her teacher about this along with sending her an email. I was very glad to learn that her teacher has prior experience w/ children w/ ADD. I feel that will help her alot. We have opted to not do medication at this time, to work on the behavioral at home and through therapy. But some days are soooo hard, the tantrums and pushing and the yelling. Not only dealing w/ that but she also has asthma and allergies in which she does take medication for. For me also having to deal w/ her father and step-mother who wants to take her off all medication and blah blah blah. It has gotten into a huge mess where it is currently going through lawyers and the court. I'm also trying to finish college, I already moved my graduation back from September to December so hopefully I can still make that goal. I do have a wonderful husband (we have been married 5 years) and supportive parents. I made this kind of long but I have also been trying to find parents w/ children in this situation! Would love to be able to do a support group! I live in Farmington, is there anything more local than St. Paul?
J.

M.-I live in Big Lake,my 14yr and my 12 yr old boys both have the diagnoses of ADHD. Both also have Aspberger syndrome. The schools have been very helpful,our peds doc was great also. My older son is no longer on meds for anything,but he was a very mild case. My 12yr old on the other hand is WOW. out of control with out meds. He paces cannot concentrate and comes home from school all worn out.
You are not a bad parent!!!!
Call the school consulor for help and find a doctor who will listen to you and not brush you off.
M.

M.:
I may not know you but, I'm still going to praise you!! I'm sure you work hard with son, don't forget about you too!!

I'm a daycare provider and have worked with one of my daycare children who has ADHD, he's no longer with me, but I know him and before he was diagnosed his mother and I could not understand some of the things he would do. Now knowing what he has, he is on meds, and wow what a change. He even apoligized to me one day when he forgot to take his meds. He said " T., I'll try my best, but I think I forgot to take my meds and I don't know if I can control what I do, but I'll try" This all coming from a 8 year old boy at the time.

So even though I don't deal with it any longer I still know what your going through and I praise you for raising your son to the best of your ability. WAY TO GO!!!!!

Hey! You are not alone or the only parent that has to deal with these type of paretning issues! There are lots of parents connected to Pact 4 that are dealing (to some degree or another) with similar concerns.
My 9-year-old just recently completed a "find out what's going on and get help phase of his life". We began with our family physician, moved on to county resources, met with a family home-based visitor through Woodland Centers, utilized respite care, held a Family Based Decision Making Process meeting (which was most helpful), and worked with A Day Treatment afterschool process. It was exhausting, but well worth the effort.
I began by telling my son I realized he was hurting and I promised to persue the matter until we found the help we-not just he-needed. I feel good about that.
Well, that is a thumbnail sketch and some encouragement. Contact me if you want/need to know more.
You know in your heart what is going on with your child.
Surround yourself with people that can help you see around you "blindspots" and keep on moving in a positive, caring direction with your child!

Hi M.
I work for Child Care Resource and Referral Agency in Shakopee. My suggestion is to connect with First Step ###-###-#### and ask about support groups and resource for ADHD. There are many resources. Also if you were not a great parent you would not be searching out supports for him and you. Congratulations to you for being so tuned into his needs. The school district should also be able to put you in contact with other parents and support groups. Talk with the special needs coordinator the school.

Hi M.,

I am a 36 year old mom with 2 children on girl, 13 and one boy 8. My son has Asperger's Syndrome, which is a form of autism, but often misdiagnosed as ADHD. I know how you feel, when you say how people react. My son is very smart, but lacks a lot in social skills. Plus he gets very excited at times and goes overboard with his behaviour. I go to a support group for parents who have kids with special needs, it is very comforting to me to know that there are others and they understand what I am going through, and at times have tips on how to deal with certain issues.
I live in Vadnais Heights. Where are you at? Feel free to write me, my email is ____@____.com.

S.

I also have a child with "characteristics" of the ADHD. She has been assessed by a number of different places, including schools and private counseling centers. One psychologist actually wrote in his report that it was just a parent-child conflict. I understand your concern for this issue. You can write me privately if you wish.
Good Luck,
J.

M.
First of all, anyone that tells you ADHD is not real is incredibly ignorant and insensitive. A great way to get connected to many services is to call ###-###-####. It is Hennepin County's Social Service "Front Door". If you ask for a Children's Mental Health Case Manager they will ask you a few questions and then a social worker will come out for an interview. The social workers that come to your home are very helpful and full of information and referrals. You can decide at that point whether or not your family and son would benefit from the services. I know that having Hennepin County involved may seem weird, but it is a voluntary program that is not based on income, but rather on a child's mental health needs. You can get connected to parent support groups, mentors, after-school programs and lots of other helpful services. If the county doesn't feel like an option for your family, you should check out CHADD. There is a website, although I don't know it specifically, but if you google CHADD it should get you there. It is a national agency which provides information and support for people with ADHD and ADD. Another option is Pacer.org. They are a local agency with TONS of helpful information for people with all types of disabilities, including ADHD. Hope this was helpful. Best of luck to you!

your not alone and people that dont have to deal with this kind of disorder can be pretty mean!!! i have a 9 year old girl that has odd. optionanl defiant disorder.. some what like adhd... i at frist thot it was me and later when we started therpy and meds on her as she was really bad. i learned it wasnt me. i now have her off meds for almost 3 months now and shes learning how to control herself. as school is here i might end up putting her back on but time will tell if i have to do that. but i wish you good luck and if you want you can send me a personnal message i dont mind to talk. good luck hugs and keep your head up..

Hi M.,

I would love to talk with you-my son is 8 years old and I am having a very difficult time with his ADD. It hurts me too to watch him try and navigate through this very intense disorder. I feel so helpless-like what can I do to help him without treating him like he's broken. I too have adult ADD so I understand what he's going through a little, but not enough. Please email me-and anyone else who might be able to offer some insight and/or support! ____@____.com
Thanks!
J.