Special needs mommy's :)

LainMac

Hi Folk,

I haven't figure out a quick way to invite people all at once. And even though I am the creator and monitor of the group, even I can't find it through a search. So I am copying 1 name at at time sending individual invites.

I got through page one and will do a page a day until I catch up.

If someone would like to become co moderator, we could split the list up and it would go quicker.

MariaM7786

Hi I would love to join! Both of my children have special needs, my oldest child has ADHD and my baby girl is diagnosed with a very rare chromosome disorder, which leaves her developmentally and physically behind. She will never be independent but that is ok with me, because i just love her so much! Trying to lose weight and get physically fit because I was diagnosed with fibromyalgia and I need my health and all of my strength to take care of her right now and the years to come.

SparkleShine

I started a Group

Super Special Moms

As a closed group, could be a bit more open about our issues and we would have to worry about trolls less.

Please join.

So cool! Thansk for doing that!:flowerforyou:

I also wanted to add that I have a typical developing daughter who is 13. She is awesome and is a loving, fun, and silly girl. Sometimes I feel she the harder one of my two kiddos! She is very head strong!!!

Ittybitty22

great post im a sahm with a daughter with charge syndrome she is one of the better cases 2yrs old and most dnt make old

EmRobo

I would love to join.

I have two children, one typical, one atypical

My eldest has just turned 4, she is the atypical one, she has global development delay, a speech disorder, and other various things, we are waiting for tests and diagnosis, but they are slow and don't want to diagnose here in the UK so early. We are trying to get her looked at to see if she is Autistic too.
On top of that she has mobility issues and we are trying to get to the bottom of that too.
We are sorting out her statement for school when she starts in September for her to have 1-2-1 support

Its so hard work and you all know, not just physically but mentally and emotionally, and this has complications on my eating etc

LesliePierceRN

Both of my kids are special needs, with very different conditions. My daughter has a rare inborn error of metabolism called Propionic Acidemia, which is fatal 75% of the time in the first weeks of life. She will be 16 years old in June. My son, who just turned 13, has autism.

Carnivorekat

I am a special needs mum too - my son is 7 and was diagnosed a year ago with Tourettes Syndrom and ADHD - he is a delightful little boy most of the time, but it can be stressful at times dealing with his tantrums and his down times when his Tics are really bad. I am an emotional eater so has played havoc with me trying to eat healthily but I am struggling through. My son is on medication and hopefully the change in medication we are just going through at the minute will help things.

It is difficult for others to understand the situation when they do not actually experience the problems raising a child with special needs has - I think it is great to have as much support as possible

Flab2fitfi

Hi can I join too. I'm a mum of four - I have a 12 year old who has high functioning Autism. I also have a 7 year old who is awaiting diagnosis and a 22 month who has speech and language delay with social communication concerns ( sounds familiar to anyone lol)

lucylousmummy

my son is called matt, he is 12 and his official diagnosis is

adhd
odd
conduct disorder
tantrum dysregulation disorder
childhood bipolar
anxiety disorder
dyspraxia
autistic spectrum disorder
and abandonment issues

we get little to no help, have to fight for every ounce of support we do get, i've had abuse from parents of "normal" kids because my son doesn't understand normal friendships, personal boundaries, or social situations. we have a fight every single day to get him to take his medication, take care of personal hygiene, or cooperate in any way.
i also have a 4 year old son and two daughters aged 13 and 1, there lives are made hell by matt who is highly violent towards his older sister and very domineering to his younger brother, so far he is leaving his youngest sister alone but we constantly worry for how long this will last
i have to be on call 24 hours a day, school phones at least once a week unable to cope and wanting me to pick him up, due to this i have found it hard to either find a job or hold one down, so now im a stay at home mum.
fortunately for me i have a wonderful support network, my family (after years of not realising how bad it had become because i hid it well) are really supportive, often giving me a couple of hours respite from him or giving the other kids a break by taking them out for a few hours. my friends although they dont fully understand what i go through, listen to me vent my frustrations and offer any support that they possibly can.
mine and matts biggest support comes from my husband who is matts step dad, he has raised matt from him being 4 years old and goes to every single appointment with us, treats him just like he does his own, unfortunately matts real dad is a complete waste of time, after having nothing to do with him from being 18 months old (we seperated when matt was 12 weeks old, divorced immediately, and he dropped all pretenses of wanting to be a dad soon after) matt got in touch with him out of curiosity in november, i explained matts difficulties, told him if he wanted a relationship with matt i would help him in any way i could, but by the beginning of march he had gone again leaving matt in a worse state than ever
i take my hat off to each and every single mum (or dad) on here who has a special needs child

Dumbell_Diva

Hi I have 3 children, my 7 year old son is autistic and we are in the process of getting him officially diagnosed. Both peadiatrician and doctor said he is on the autistic spectrum but I have a fight on my hands as his teacher told me theres no point going through the lengthy diagnosis process as he already gets the help he needs with his writing and he isnt severe enough (??!) He is hysterical most mornings about going to school, hates school, cant cope with school or playing with his friends which usually ends up with him being told off for being too rough or not following the rules of the game. When someone comes to the door to play with his brother or sister he tells me they arent allowed in!! If we go to the park and people are there he doesnt like it. Accademically he is brilliant at maths and science but not so good with writing, most of the class write pages of stuff whilst he struggles with one or two sentences. His speech is hard to understand, he had speech therapy a couple of years ago. He also has like little tics, he will shrug shoulders without realising or blow raspberries without realising, and does a little dance when excited, he doesnt display this behaviour at school, most of his eccentric behaviour comes out at home and not school. Its such a hard thing to go through when he is shouting "you dont listen or I hate you", Ive had no advice and everytime I talk to his teacher I end up feeling like Im causing a fuss. Its such an upsetting and demoralising road to travel on, if anyone wants to add me that would be great! Helen x

Carnivorekat

He also has like little tics, he will shrug shoulders without realising or blow raspberries without realising, and does a little dance when excited, he doesnt display this behaviour at school, most of his eccentric behaviour comes out at home and not school.

It sounds like he may also have Tourettes Syndrom, it is worth checking that out too - my son has Tourettes and ADHD and it took us 3 years to get him formally diagnosed.

I hope things get easier for you - and it is definitely worth getting formal diagnosis even if the school do help out lots. You can then get extra help from the Council, and also possibly DLA - its definitely worth going for.

Acaravello

Hi Diane!

Have you ever heard of CMV? My son is 16 months old and has global developmental delays. I contracted CMV while pregnant with him and the virus attacked him and wreaked havoc on his little brain

Acaravello

Hi, I'm Diane,

My son Benjamin is 12 years old and has the development of a 2yr old. To this day I haven't been given an official diagnosis, I'm told the fetus suffered brain damage during development and therefore he has severe global delay. He is non-verbal, has epilepsy and is in a wheelchair. He scoots around the house on his knees and is very happy 100% all of the time. Its very difficult trying to figure out what he wants, he learned to point 2 years ago which has made a huge difference. We are trying to teach him sign language and have had success with simply signs : eat, drink, more, all done. And he starting using a communication device that has pictures for him to press the buttons of what he wants. It takes alot of consistency and repetition in order for him to learn something new. I also have an 20yr old step-son, 18yr old son and an 11yr old daughter, who do not have any disabilities.

Hi Diane!

Have you ever heard of CMV? My son is 16 months old and has global developmental delays. I contracted CMV while pregnant with him and the virus attacked him and wreaked havoc on his little brain

TerraMatris

I started a Group

Super Special Moms

As a closed group, could be a bit more open about our issues and we would have to worry about trolls less.

Please join.

Please add me when you can. Thanks

I would love to be a part of this group too. Add me if you can

I would also love to be part of this group and the open group...you all are wonderful...it's great to hear from others

Dumbell_Diva

He also has like little tics, he will shrug shoulders without realising or blow raspberries without realising, and does a little dance when excited, he doesnt display this behaviour at school, most of his eccentric behaviour comes out at home and not school.

It sounds like he may also have Tourettes Syndrom, it is worth checking that out too - my son has Tourettes and ADHD and it took us 3 years to get him formally diagnosed.

I hope things get easier for you - and it is definitely worth getting formal diagnosis even if the school do help out lots. You can then get extra help from the Council, and also possibly DLA - its definitely worth going for.

Thank you! before we thought it was autism the teacher used to shout at him for not doing his writing and threaten him with the headmistresses office, he was coming home in tears every day and hysterical about going in the next day, so I kicked up a fuss, I told her I thought he was dyslexic as he was getting into such a state so i took him to see the doctor who thought he was autistic and arranged the paediatrician appt. Im sure the teacher is taking it personally! I told her the doc arranged it all not me, she said she doesnt know what it will achieve as he already gets help.... but he doesnt get one to one, its one to four or something like that! Its been so draining!! Teacher said he is withdrawn at school and doesnt give eye contact but she said as he didnt cause any problems she didnt think to mention it. His school friends tell me he is in tears every day at school!

mignon83

Hello, I also have a special need child with Downs is going to be seventeen next Monday May 7. You can add me as a friend if you like.

Miss_E_

Hi, i have a 9 year old son with high functioning Autism he attends a main stream school and is very intelligent, but he is super sensitive and has very high anxiety, I am DREADING him starting main stream high school in a few years, but hes to intelligent for a special needs school. I suffer from high levels of stress, not stress from my son because even though he is autistic he is very well behaved and we are use to his routine and his ways, but stress from trying to fight the education authority so that my son gets the education that he deserves, the gym has been my savior and i believe that i would be on a high dosage of anti depressants if i didn't go to the gym regularly, feel free to add me xxx

TerraMatris

He also has like little tics, he will shrug shoulders without realising or blow raspberries without realising, and does a little dance when excited, he doesnt display this behaviour at school, most of his eccentric behaviour comes out at home and not school.

It sounds like he may also have Tourettes Syndrom, it is worth checking that out too - my son has Tourettes and ADHD and it took us 3 years to get him formally diagnosed.

I hope things get easier for you - and it is definitely worth getting formal diagnosis even if the school do help out lots. You can then get extra help from the Council, and also possibly DLA - its definitely worth going for.

Thank you! before we thought it was autism the teacher used to shout at him for not doing his writing and threaten him with the headmistresses office, he was coming home in tears every day and hysterical about going in the next day, so I kicked up a fuss, I told her I thought he was dyslexic as he was getting into such a state so i took him to see the doctor who thought he was autistic and arranged the paediatrician appt. Im sure the teacher is taking it personally! I told her the doc arranged it all not me, she said she doesnt know what it will achieve as he already gets help.... but he doesnt get one to one, its one to four or something like that! Its been so draining!! Teacher said he is withdrawn at school and doesnt give eye contact but she said as he didnt cause any problems she didnt think to mention it. His school friends tell me he is in tears every day at school!

Having a child with TS can be very frustrating...when my son was in 3rd grade his teacher became upset that I kept coming in to check on him (and his teacher). We are our children's strongest advocates...don't back down.

I took my son to multiple doctors...including a psychiatrist...in the US...schools can provide this service for their students.

Stand strong...have faith.

focus4fitness

Hi Moms! I have a seven year old with apraxia of speech.

skylark94

I joined the group.

My 7 year old daughter was 15 weeks premature. She has cerebral palsy with physical, emotional, and cognitive delays. She also has epilepsy and a VP shunt.

sewist

Please add me when you can.

My 9 year old son is low functioning autistic, non-verbal and self-injurious. Fortunately, he is able to make some eye contact and likes to cuddle as he goes to sleep.
After years of working with the public school, he now goes to an amazing school for children with Neuro deficits where he recieves all the therapies and support he needs to progress. He also has a service dog that helps him stay safe when he is out in the community. While there are tough times, we feel lucky to have him as our son!

LainMac

Hi Everyone,

The group

Super Special Moms

is now find-able in if you search on the groups tabs. Some of you have already found it on your own. I am so psyched that we are getting together with people who "get us" ~ get what our kids go through and get how hard it is to do right by our children and still save something for ourselves.

I hope the group to be a place where we can safely vent our problems and celebrate our successes no matter how small. Like "Today I went to and IEP meeting, the SPEd folks were jerks, and I did not over eat."

houseofcarpenter

hi, i have 4 children, my eldest is 11 and has aspergers syndrome - he has just started secondary school and we are having alot of problems with bullying which are causing him great anxiety last week he said he didn't want to live anymore - heartbreaking - getting so frustrated with the school and the system he was classed as in a cisis state and they arranged for an emergency meeting next friday!!! lets hope all goes well for us in the mean time!! i have joined your group i think we all seem to have to fight so hard for any type of help x

Mootpoint

@houseofcarpen - my ASD son had the same difficulty during the first two years of mainstream senior school - not a fun time! We finally decided (the school and us and various agencies) that he should be part-time; which is what happens now. It works for him as he always has someone with him in the school lessons he does attend - and he is finally getting the help he needs - hang in there. Have you had a TAC meeting yet? Also, if the school aren't listening, try CAHMS. They really helped my son :-).

michellelmcc

Hi, I am a mom of 4 wonderful, amazing children. My oldest son, 13y has ADHD, 12 yr daughter ADHD, 11yr son with anxiety issues and a 10 yr son with ADHD. My worst times are getting them out of bed and out of the door and bedtime. This cause me a great deal of stress that I usually turn to food for support. It would be wonderful to have support and to support other moms with special need children.

KellyKAG

My daughter is 9 and has a "tic disorder" and makes a horrible teeth chomping noise. When she tries not to make this noise she makes a loud hum in the back of her throat. Its starting to affect her socially in school and i feel so bad for her. She is painfully shy which only makes it worse.

Then there is my son who is 6 years old and has ADHD and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders).The PANDAS causes horrible worries and OCD type symptoms. He is always very concerned he is a "bad boy" or has done something wrong. He comes to confess something every five seconds and needs nonstop assurance that he is okay and what he has done is okay.

I'm tired.

breezymom81

I am the Mommy to two special needs- my daughter has a Chronic GI disease- Eosinophilic Gastreoenteritis, she ws formula feed only until 4.5 and in the last 3 years and been able to start eating foods- we are at 10 different foods- all whole (no spices, breading etc) and experiancing a huge set back! So trying some new foods. She is aSuper Hero and will always be my hero, we have under gone so many surgeries I can't keep count -with out our log!

My son is 10 has the same condition jsut not as severe,

They are amazing!

jaxbeck

Ohh I would love to be in the group, My 7 year old son is PDD-NOS, most likely an aspie IMO

JessicaJoy723

My son is six and a half years old and at the age of 3 was diagnosed with Autism...then last year we were told he has a rare syndrome called Chromosome 6 deletion syndrome. There's not a lot of information about it but he continues with all of the therapies he received before the new diagnoses. He is also still in the Autism program since he still falls into the spectrum. The only thing I would give anything for him to be able to speak to me. His communication is his weakest area. I hate not knowing when something hurts or to know what makes him happy. It has got to be so frustrating for him at times. Luckily I was also blessed with my daughter who is 9 and he could not have a sweeter more loving sister. Having a special needs child can Dec have its hard moments but someone told me once God gives special babies to special moms. Its my goal to make him and my daughter have wonderful lives and know how much they are loved

TerraMatris

hello all...

...my doctors put me on a special nutritional program...which has helped tremendously...and now that I am back on "calorie counting" I was hoping this support group was still active.

Is anyone still out there...and how are you doing?