Hello Everyone.

Stephanie - posted on 03/23/2010

i have achild with special needs and yes it is nice to know that ur not alone keep in touch

Sarah - posted on 11/23/2009

Good for you! Someone needs to remind those case workers that just because a child may have some medical problems does not mean that they don't deserve a family.

Thank God for people like you. You deserve to hear what a wonderful person you are.

Michelle - posted on 11/22/2009

hi my little girl had special need and just started school was nursery fulltime where i work hope help me fine people so needs victoria can walk move about she always smile talk everyone thanks michelle maslen

Regina - posted on 02/25/2009

sorry it took me so long to get back i have been so busy have time to get on check email then off dealing with the kids.

Barbara - posted on 02/10/2009

Hi All,

I am Barbara.  I have two kids who have ADHD.  My son is an adult now but has coped with ADHD all  his school life.  He is currently on break from college and is not medicated.  However while in class, He has maintained a GPA of 3.8 for 3 yrs in college.

My daughter has ADHD, ODD, PTSD, and RAD.

Anyone know what RAD is?  I do and will be happy to educate.  You can email me here.

This is a GREAT list Brenda, Thanks for starting it.

Barbara

Barbara - posted on 02/10/2009

Hi All,

I am Barbara.  I have two kids who have ADHD.  My son is an adult now but has coped with ADHD all  his school life.  He is currently on break from college and is not medicated.  However while in class, He has maintained a GPA of 3.8 for 3 yrs in college.

My daughter has ADHD, ODD, PTSD, and RAD.

Anyone know what RAD is?  I do and will be happy to educate.  You can email me here.

This is a GREAT list Brenda, Thanks for starting it.

Barbara

Tracy - posted on 01/11/2009

I use to worry too about all the "influences" my children didn't have in their lives; friends, grandparents far away, etc. But I've learned, with all my kids that God puts into their lives what He needs to make them the people he wants them to be whether that be friends, or solitude. Every situation the Lord allows in your child's life, from the fundamentals of his/her special needs, to the fallout circumstances are there for his purpose. I think the key is to helping any of your children understand that God has not abandoned them even if the rest of the world seems to not understand or care. He knows what they need better than we do. He understands the pain of each ones struggle.  I think the key to "making it happen" as Christina puts it is being aware of God's involvement, and trusting his heart when you can't see his hand. We serve all our children best when work in concert with the Lord, and seek his best for them, rather than what may appear most "normal" to the world.

Brittany - posted on 01/07/2009

Wow lots of responses! I too have an almost 3 year old, he has Moebius syndrome which means he has no facial expression, severe speech delay, no lateral eye movement, and low upper body strength; and is also slightly autistic we think.  I agree its tough when you watch friends' kids excel, but i have to say, I think we are more proud than anyone when our babies do reach their milestones!

Christina - posted on 01/07/2009

I know that you are very discourage and a lot of us wish that our special needs children doesn't get excluded fr. what normal children do. Just to state it plain. We are their parents! If we want our children to have friends, make it happen. She is not invited to a party. Have your own party. Perhaps having your own party could teach normal children to be sensitive to other people needs. Sensitivity and loving and caring spirit can grow in their hearts but someone has to plant the seed. Maybe that is where you come in. You can make the world a better place for your special needs child by changing even just one child. So don't sit and feel sorry. Make it happen. You can do it!!!!

Brenda - posted on 01/07/2009

that is amazing.

Christina - posted on 01/07/2009

I have a cousin with spina bifida and she is now grown, married and have a family of her own. She is a teacher. I just thought that might encourage you.

Brenda - posted on 01/07/2009

I wonder if someone could take over, me being moderator? How would we do that?
Im not leaving, just would like someone else to be this person.

Tracy - posted on 01/07/2009

Fiona's right! It is very cool reading everyone's responses. It's much harder to respond concisely to everyone's thoughts.

To Fiona; It is always frustrating to me watch people's responses to any young parent dealing with difficulties of babies/children in public, whether the child has special needs or not. That reminds me of a novel approach my brother once used in just such a situation. He was a couple of people behind a young mom with a crying baby in a cash out line once. The guy immediately behind her was rolling his eyes and acting all annoyed. My brother simple moved past him and offered to help her with the baby till she'd finished her business at the cash. Lots of people are quick with the looks. Very few are quick to offer assistance. I don't think I'd have thought to do that myself until he did. Sometimes all it takes is one person taking a different approach.

I understand too, Fiona when you're talking about in dealing with children with differing abilities. My son is also my "special needs" kid but I have 3 daughters who are exceptionally bright. It is very difficult to balance the needs of all the kids. My son "needs" me in obvious ways my daughters do not, but my daughters, as "normal" & "bright" as they are, still need me to be their mother. Is it possible that Michelle, even at the tender age of 1, is feeling the need to compete for your attention? She is still a baby & doesn't yet understand what the difference between her and her brother are, but evidently she recognizes that there is a differences already. As she grows & learns to understand her brother in his context, you may see that pushiness disappear.

All of my children's needs are special to me because it's part of what makes them who they are, whether it's an official "special need" or not. The trick I think is figuring out what each child needs from you and finding a way to give it to them in a way that makes them feel like they are your priority. With "special needs" kids it's often more work & bigger reward when they do succeed, but it is in no way more important than your other children.

Getting to know your children as people takes time just like any other person. There was always a period with each of my children when I couldn't really say what it was that made them tick. Then just when I thought I knew what they were all about they became teenagers and it all changed! Life does play tricks on us, doesn't it?!

Simone; I don't know why an older girl can't have a fairy dress. Why don't you just go to Sally Ann or any second hand clothing store and find pretty adult party dress, or if can you sew, just make one. Teens are always pushing the limits of conformity with their style choices. There is no reason why you can't help your daughter find a way to be a fairy princess if that's what she wants to be. I think there has to be a way for you to do that without looking like you just stepped out of a Broadway musical too. Although, all teenage girls have some drama queen inside them. Maybe she'd enjoy exploring theatre; you could even try creating a threatre arts activity for other special needs kids. It might be fun trying.

I agree with Brenda, what strangers think is irrelevant. (Although, living in a small town/city there aren't many strangers) I have tried to teach my children to build their strongest friendships with their brothers & sisters. In another 20 years their "friends" might not even be on the same continent, but their siblings will be there for them long after I'm gone. They are their God-given friends for life.

I think one of the struggles I deal with personally, in reading people's response, aside from being thankful for those whom I identify with, is how my heart goes out to those of you who's child(ren) have "special needs" that threaten & in some cases take their lives. Helping my ADHD son learn to become a functional adult is one thing. I am essentially doing that with all my children, special needs or not. But I can't imagine dealing with something as tragic as Annette's situation. Somehow James' ADHD doesn't seem like much of a struggle by comparison. I'm sure your crown, my sister, will much larger than mine!

Christina - posted on 01/07/2009

We should have some sort of tip board where we could all post tips and possible solution to problems. There are some people that might be embarass or just shy about asking for some help or feel that their problems are insignificant.

Annette - posted on 01/06/2009

thank you

Brenda - posted on 01/06/2009

I am so sorry for your loss Annette.

Annette - posted on 01/06/2009

we had 2 children with special needs our oldest passed away in july 2007. he had CP and there is not a day that goes by that we don't think of him now we are trying to help our youngest with spina bifida, and i agree that there are some very hard times but to see their faces smiling at you makes you feel like a million dollars. I would not take a second back that i spent with our kids

Kandi - posted on 01/06/2009

your welcome i have 2 daughters one only has pervasive developmental delay not otherwise specified a branch of autisim means shes delayed in learning and they dont know what caused it . and my other one is very special needs she has mild epilepsy and ot delay and other delays along with speech. so you are not alone there many others out there just not on here trust me i have met alot in my 12 yrs being a mother :]

Brenda - posted on 12/31/2008

Yes just the one.

Simone - posted on 12/30/2008

you only have one at home? It's good your child has a neighbour. :)

Andrea - posted on 12/30/2008

gosh yes it is so good to be able to vent and have people actually understand what is going on i have been to counsellors and they just don't have a clue as they have "normal" kids they have no idea what energy it takes to have a specil needs child or severe disabilities....

my 4 yo son has severe CP as well as Intellectual and hearing problems

Brenda - posted on 12/30/2008

Actually no! Both of my older sons live on their own. lol So no playmates here. Only our neighbours kid next door.

Simone - posted on 12/30/2008

It's not so bad today. Sometimes I have to do things differently and make compromises, but life can still be good and fun. I don't think I'll ever completely be satisfied, after all how can you? When someone you love is not getting the very best in life which they deserve!

By the looks, you have more than one kid, which I'm guessing is good in that your child has a sib/playmate, but maybe also someone to compare himself to? Leila doesn't talk, but I see her shy away from kids half her size/age in fear and anxiety, and it BREAKS my heart, I was sociable and it came so naturally to me as a kid.

Brenda - posted on 12/29/2008

IM sorry to hear all this. I hear you, and how upsetting it can be. My son doesn't have friends either, only from his LLS class. He doesn't do allot of things most kids can do, because they allow it. He feels it all the time, and teels me he wished he had more friends. It's so heart breaking to see him, wanting everything that I once had as a child.

Don't worry about what stranger think. As long as she is loved, and the people in her life know who she is. That is all that matters. Stranger are exactly that, STRANGERS! They can't judge.

Simone - posted on 12/29/2008

Sometimes little things hurt and get me down, like I wish my daughter had friends, I wish I could have a relaxing day at the beach with her, I wish she wasn't missing out on things. I wish they made fairy dresses for older kids, because she still wants one. But most of all I wish strangers would look at her and see that she is just a normal little girl.

Brenda - posted on 12/29/2008

Happy New Year everyone.

Tammy - posted on 12/29/2008

I feel the same way. I enjoy coming on to Circle of Mom's but I have been so busy with the Season to come on here lately

Tracy - posted on 12/24/2008

You know, my all children were my life-long dream from the time I was a little girl. I could never have imagined it possible to love anyone so much, and to when it comes right down to it, feel so utterly inadequate to do this job of mothering most of the time. Sometimes I wonder what God was thinking when he gave me my wish. I think the key is in this one all inescapable reality. God does not give us children because we are so wonderfully capable, but because He is all that we are not. Nobody knows how inadequate they are than mothers of special needs kids. So many times I thrown up my hands in utter frustration and wondered what my next move should be. Now I look at my son, who will be turning 18 this coming spring, and marveling at the young man God is making him to be. The Lord may well have used me along the way but really he is entirely God's workmanship. I can take very little of the credit. Being a mother of a special needs boy(ADHD) has taught me more than anything to daily put my children in Jesus' hands & let him take care of the things I can't. That's lesson works well with the "normal" kids too.

Lubna - posted on 12/23/2008

Yeah u r not the only one my son who is 6yrs has Arthogrposis by birth.That is muscular weakness & is severely disabled.It is so difficult these days when kidz have holidays. I cant even take my normal son who is 7yr anywhere bc most places do not have facilities for the disabled.

Brenda - posted on 12/23/2008

We have good days and we have bad. We have went through hell, and we have the most sunny days. I try and i have had many outside resources help us, due to my asking. I cannot do it alone, being a single Mom with 2 Special needs kids is allot of work. Im often tired, and stressed out. Just to let you all know, when they hit their teens, it may get allot harder. My 16 year old is can be very mean. however he still doesn't grasp that he is hurting other feelings. He just doesn't get it.
Anyhow, I love my boys with all of me.
I wish you all a Merry christmas and the Happiest of 2009.
God Bless you all and your families.

Christina - posted on 12/23/2008

It is a luxury and great joy to get a glimpse of normal behavior from our children of special needs. Something that can easily be taken forgranted by some whose children are normal. So rejoice Mom's and savor the moments. The moments that come few and far between and remembering that life is precious. Merry Christmas and Happy New Year to all of you! Look into New Year as a promise of wonderful things to come!

Brenda - posted on 12/23/2008

That is horrible Kristine. im sorry to hear all this. good luck.

Kristine - posted on 12/22/2008

Hi Brenda,



PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.



The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep. throat infection.



What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and "attack" the heart valves, joints, and/or certain parts of the brain. This phenomenon is called "molecular mimicry", which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance.



In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea.

Brenda - posted on 12/22/2008

Wow, i pray for you Virginia. Thats allot to handle

Virginia - posted on 12/22/2008

l know its hard cause two of my kids are special needs my son is adhd,odd,and manic massivedepression disorder and my older girl has adhd and they both have learning problems

Brenda - posted on 12/20/2008

Oh god, that would be awful. It would frighten me, however I guess you would get used to it.

merry Christmas Each and Everyone.

Beki - posted on 12/20/2008

i am new to COM and i have read most of what you've all wrote. wow, so many diffrent situations on here. i don't have a diagosis for my son but he is very delayed in all areas. he is 4 in march and is at the age of a 18 month old baby with speech at less than a year. his bone age is also delayed at the same as a 28 to 24 month old and he is about that size. people don't relise his age and think he is lovely, then when they ask how old he is and i say nearly 4 years they totaly change. i had one woman stick her noise in the air, turn her back to me and she didn't say another word to me. i let them think what they like, they know nothing, but it does hurt. i hope i do find out what is wrong with my son. i want to know how i can help him more.

Laura - posted on 12/20/2008

hiya brenda,thankyou,west syndrome is otherwise known as infantile spasms its a rare and seriouse form of epilepsy in infants.

Brenda - posted on 12/20/2008

Awww, thats so sad Laura.
I know he feeling, you wouldn't change anything for the world. Wejust love our kids to bits, and life would really suck without them. Even though it gets very tough.
I have never heard of this condition.

Laura - posted on 12/20/2008

hello everyone,its a real comfort knowing that there are mums out there in a simmular position to me,i live in lanzarote its a really small island and they dont offer a lot of help,my son is 2 and half and he cant sit,talk,walk or chew food yet.i also get really down somedays and wonder if he is ever gonna be able to do any of these things,i also find it really hard when i see other normal children younger than my boy walkin talkin and doing all the normal things, but on a better note he is always smiling and laughing and such a joy to be with every little bit of progress he makes is just amazing! i wouldnt change him for the world.my son is called joshua he was born 3 months premature and he has a rare condition called west syndrome,is there anyother mums out there with kids with this same syndrome? i wish you all the best! x

Brenda - posted on 12/18/2008

Wow it sure is nice to see all of you and telling everyone about your stories.

Kristine, what is Pandas?

Brenda - posted on 12/18/2008

Tammy! we think my son has ODD aswell. He is always so compulsive, it drives me nutts. However i have to be patient. I think I have allot more patience then allot of moms around me. lol The least little thing sets Devon off.

Nicole - posted on 12/17/2008

No Brenda you are not the only Mom out there who has a child with special needs, I myself have identical twin girls that were born pre-term and still are somewhat delayed and they are going to be 10 in January. They are why I wake up every day and work so hard to provide them with the love and caring that every child needs and deserves.

Shawn - posted on 12/16/2008

Hello. Yes it is good to know that there are other moms out there that have kids with special needs. Yes my daughter can be a handful at time but i wouldnt change her for the world,

Brenda - posted on 12/16/2008

Well my son isn't a ray of sunshine everyday. However h's the most caring child I have ever seen. The things he does to me, is so unbearable, but we are getting through it. He can be very physical towards me. And now verbally abusive.

Tammy - posted on 12/16/2008

i have an 11 year old son, who is in grade 6. but only has the understanding of a grade 3 level. He has adhd , along with odd. it's a very stressful job to help him. So many doctor's and theropists appointments . He's a good kid. but when he decides not to listen or obey, he can make things really unhappy.

Also thank you for letting me join this group. Im glad to hear and know that i am not the only parents suffereing here.

Kelley - posted on 12/13/2008

Thanks for the welcome!

Bonnie - posted on 12/12/2008

its nice to see everyone come together to help one in other. Not only to I have a special needs child but he is my stepson in his teens so he doesn't like to listen to me very well.

Engi - posted on 12/07/2008

Meggy is special needs with her nutrition in particular. She is just the brightest and sweetest little girl u could ever meet. I love it when she wakes up every morning and says Boo!

Kristine - posted on 12/07/2008

Does anyone have a child that was diagnosed with PANDAS? And, if so, how are they treating your child?