Do you have any special needs children?

[Jo]

What are their special needs? Introduce them(and yourselves) here!

[Jo]

I'm Jo, one of the co-owners of SpiffyMoms. My dd Rai was born with a large left cortical dysplasia. This resulted in intractible epilepsy. She had to have a left hemispherectomy(meaning they took out the left hemisphere of her brain) to stop the seizures or we would have lost her. She has weakness on the right side of her body due to the surgery. She also as a right vp shunt because she developed hydrocephalus after one of her surgeries. She has a g-tube for liquids but is eating all of her solids now. We are looking into a feeding clinic to help with the drinking issues and a few chewing problems. She is also mentally retarded.

She is a fantastic girl with an incredible spirit. She loves to laugh and snuggle. She really enjoys school and her teachers. She gets so excited to go. She is also very opinionated and finally learning words so she can tell us!

[Sam]

I have Ross and Elliot.

Ross is 7 and has learning disabilities,social and language delays,asthma, reoccurring slight hearing loss,possible OCD/Anxiety disorder and now I think we can add behavioral issues into the list. We are going through a very rough patch with him right now,he is not mentally well at all :(

Elliot has LD,severe speech and language disorder,he is 5 and has the learning age of the average 2-3 year old in most areas,he has actually lost some of what he has previously learned. He is a quiet child and you never really know how he is feeling. Ross lets everyone know when something is wrong,he doesn't tell you what is wrong but you know he is not happy,Elliot just remains the same,he lives in his own world.

They are both beautiful,they bring a lot of problems but also a lot of love and joy to us.

[Kate]

I'm Kate, and my daughter Maia has ADHD, depression and anxiety issues, a severe chemical intolerance causing some fairly spectacular liver reactions to things...and while still waiting for the developmental paediatrician assessment, it appears that she probably has Asperger's syndrome.

None of those things stop her from being an absolute star though, and she has to be the most amazing gift I have ever received.

[Jejune]

I'm Kristen, and my second son, Liam, has Asperger's Syndrome, which is on the high functioning end of the autism spectrum. Prior to getting Liam tested we knew very little about autism, but it's something we're learning more and more about. To outsiders, even the idea that we got Liam tested was a surprise, because he appears perfectly normal and his behaviors are not immediately noticeable. A lot of people assumed it was just bad parenting on our part, but we did follow through with our instincts and go in for the tests.

Liam's doing very well. He started kindergarten early, to help him adjust to a usual school setting, and also because he is academically ahead, even though he is socially very far behind. A lot of kids with autism are not very cuddly, but Liam can actually be the snuggliest of my kids. He's a good reader, and a loving guy, and while we have a lot of frustrations, he's an endless source of rewards as well.

[quickmom]

I have 2.

Connor was born with a cleft lip and soft palate. His repairs were done when he was 3 months and 9 months of age. He is doing well and doesn't require speech therapy with is very common with cleft children. We recently found out 3 of his ribs are deformed and we're seeing a cardio-thoracic specialist to determine if surgery will be needed to correct his condition. IMO, Connor has ADD/ADHD. He constantly fidgets and flaps his hands when he is playing. Connor misses the birthday cut off so although he is 5, he is still in preschool. His teachers have expressed their concern about Connor's inability to stay focused on activities that don't interest him. When he is really into something he becomes a totally different kid.

Ian is my true special needs kid. He spent 2 days in the NICU due to his oxygen levels, which wouldn't regulate. He had kidney reflux and was on antibiotics his entire first year of life to prevent UTIs. He developed stridor caused by laryngomalsia around 3 months of age. We still hear it and he is 3 now. Usually children outgrow this by 24 months of age. Ian has been diagnosed with global developmental delay, hypotonia and apraxia of speech. He was receiving Early Intervention services (speech, PT, OT, DT) but those ended when he turned 3. He began preschool in Jan so he could continue getting some services. Ian didn't walk until 18 months of age and still doesn't talk much. We have run test after test in hopes of finding the cause of the delays, but so far, we haven't found one. He had his 2nd MRI last week and the results are normal. Our neurologist told us we may never find a diagnosis, but at least we know what he doesn't have. Ian's eardrums are retracted but he hears. He don't know the quality of what he is hearing though. He has a hydracele hernia. He'll have surgery in April to repair that and tubes will be placed in his ears then. Ian's vision is poor and he just got glasses. We haven't actually picked them up yet, but they are paid for. LOL

My youngest guy, Quinn, was evaluated for services just to see if he met them, and we were surprised to see that he did. He now receives speech and DT. He will be evaluated for Behavioral Therapy this Thursday. We don't consider him a special needs child at this time, but we could be wrong about that.

[Nona]

I'm Wynona, and my 17 month old son, Gideon, was born with Cri du Chat Syndrome, a rare chromosomal disorder, and an associated cleft lip and palate.

He is delayed in every area to some degree, but his biggest issues are cognitive delay and speech delay. He recieves speech, occupational, and cognitive therapy, and will most likely be starting physical therapy soon. He also has some fairly sever issues with weight gain. He weighs barely over 15lbs, and he's stayed at that weight for about 3 months.

He has had three of at least five cleft surgeries. The next won't be for another year and a half or longer.

He is a blonde curly headed moppet. He is the happiest child, and very social. He loves attention, and he doesn't really understand emotions beyond joy. If someone were to cry or shout at him, he would laugh. He's sweet and snuggly, and I just love him.

[wendygrace]

Hi, I'm Wendy, and my special needs kiddo is Michael who is 4 1/2 yrs. Michael was born with an Omphalocele (organs outside of his abdominal cavity) and it is the largest the doctors here in Chicago have ever seen. Typically these kids are repaired at birth or by their first birthday, however, Michael doesn't cooperate with the doctor's timeframes. He is still unrepaired and we are hoping to find a doctor in this country, and if not, this world, who can do something about it. He also suffered severe complications while in the hospital. He has three "terminal" (life threatening) illnesses; central sleep apnea, pulmonary hypoplasia and restrictive lung disease/hypoplastic lungs. You'd never guess looking at him. :) He was intubated until he was 4 1/2 months, on oxygen until one year and supplemented during illnesses until last year (we're holding our breathe that we make it through this winter without O2) and on a feeding tube until 16 months. He also has severe brain atrophy in the frontal lobe and around his ventricles, chronic lung disease, and strabismus and astigmatism and a history of kidney and liver disease. He also has SID (sensory integration disorder) which are mainly oral at this point. He may have something along the lines of asperger's or adhd however we are homeschooling and are not interested in pursing these diagnosis' just yet. (He may have also had some vaccination reactions on top of it all). He was significantly behind as a baby (didn't walk until 19 months, didn't talk for years) but was discharged at three with no need for therapies. We think he continues to have delays but, again, not pursing at this time.

Saying all that, nothing stops him and he is doing well. He has had two surgeries in the last six months and we are expecting many more once we figure things out. He is a very cuddly, loving little boy who loves his vehicles, peter pan and his little sister. He not only is my fighter but the light of my life.

[Amber]

My son Joshua is technically considered special needs, as he does require an IEP. He has a severe speech delay and some sensory issues. He has some quirky social issues, but not to a point that would put him on the autism spectrum. He's almost 5 and still is about 85% unintelligible to strangers. He is, however, very sweet & a very bright child! He loves Thomas the Tank Engine, Star Wars, and Strawberry Shortcake :giggle

He is currently in an Early Intervention preschool where he gets speech twice a week, and he will be going soon to speech therapy through the local hospital also.

[gr8mommy]

I'm Denise, and all three of my kids were preemies, and they've all inherited neurofibromatosis type 1. Luckily, it is very mild and in fact my father in law went all his life without knowing he had it, and my husband also did not know until the kids were diagnosed.

My son Aidan also has nonverbal learning disorder, which some say is on the autism spectrum and some say is unrelated. He has trouble with the nuance of language, particularly tone of voice and inflection; and nonverbal social cues are difficult for him to pick up on. He receives social skills training, PT, OT, and is being graduated from speech therapy. It is unknown whether his motor issues are due to the NF or the NVLD; it doesn't really matter to me as long as he gets the help he needs.

My girls are thus far unaffected by their preemie status or the NF, but as Aidan's learning disability showed up as he started going through school, we aren't in the clear yet.

All three of the them are very bright, very outgoing, self-confident, and strong-willed. They have hearts of gold, are very empathetic, and love the arts.

[homeschoolmom99]

I am a stay at home mom who homeschools my son who has Asperger's & OCD.
I found this site by asking for help with rude people on Yahoo when I take my son in public! Only been on this site five min I love it already! Any one else have a problem in public with rude people??

[Jo]

Hi! I am so glad you found us!

We haven't had problems with obvious rudeness in a long time. We just get the people who stare but are trying to look like they aren't staring. I do think that is because Rai is so obviously different from other kids at this point. I think parents and children face this more when they have children who look like they should be 'normal' but their behavior isn't. It is hard to deal with and I know that Jejune has faced this with her youngest son. Hopefully she will see this soon and have something more enlightening to add. Welcome again and :hugs

[Jejune]

Welcome! As Jo said, I've got a son with Asperger's and have had to deal with issues surrounding that. What sorts of rudeness are you talking about, specifically? Most of the problems I've had have come from well meaning people who try to help us. People will come up and touch kids, something I didn't really notice before, and then my son reacts angrily and seemingly inappropriately, because he doesn't like for strangers to touch him. We've rarely had to deal with outright rudeness, but I've never found a satisfying way to describe his own behaviors when they seem rude. I think he has every right to not want to be touched, and I'm trying to teach him to just say that, instead of sticking out his tongue or yelling. The only really rude thing I can think of could have happened to almost any parent - a drive by parenting attack. My son crawled under a grocery cart, and my husband was trying to extract him without hurting him. An old man walked by and said, "Well, looks like he knows who the boss is in that family." My husband said, "Excuse me?" and the man expanded on his theory that my husband didn't know how to control his children. His wife seemed very embarrassed and rushed him away.

[Kristina]

Victoria will be 6 years old on May 13 and the last 6 years have been interesting. The Board of Education has her classified as a child with related services since she is receiving OT still. Previously she was classified as a child with a disability from 2 years old until 5 years old. She was born with congenitally heel chords which she had surgery to correct in August 2004. She can now walk heel toe. She was misdiagnosed with PDD at 2 years old which was later corrected to developmental delays. She also has been diagnosed with Sensory Processing Dysfunction, which I am now questioning if it is really ADHD. The BOE did their evals last year and told me they could not place her as ADHD because my answers fell short by 2 on the survey. Maybe I am paranoid or something but I have a strong feeling there is a learning disability in her. I am trying to not be so paranoid!