NSBR: Children with special needs

[hollyxann]

I was just wondering who here in the forum has a child with special needs or a family member with special needs.
My niece is 2 and she is blind (or at least the Drs say she is). They won't know for sure til she is 3 when she goes to the eye Dr. She has nurses that come to the house and help with her development. She already has a stick so she can get used to it.
I get her about once a week and I'm not gonna lie sometimes it's a struggle. I give her mother soooo much credit (especially since she also has my nephew who is 9 months old and a complete hell-yin.)

I was just thinking it would be nice to have a mini support thread.

[nicolelogg]

My 4 year old son has autism, or at least that is what we think it is, he will be formally diagnosed sometime this year. right now he is in early intervention. My oldest daughter also may have some form of autism, and is on an Iep at school.

[Leila]

Devin has Asperger's Syndrome, OCD, GAD (general anxiety disorder), ADHD (hyperactivity type), and possibly ODD (oppositional defiance--the doctors and I disagree about this one.). He's way more than a handful, to the point that he's more than we can handle some days.

[isaacsmom]

My son Isaac is deaf (but wears cochlear implants -- so he hears and speaks) and has ADHD. We are in the process of changing up his ADHD meds and so to "test" them out, I took him with his brother and my mom to the local city baseball game tonight. And walking out after the game, I told my mom some days I feel like the worst mom in the whole world. It is a struggle to take him anywhere when his meds have worn off. I can handle his behavior, but he does unsafe things some times. And the stares from other people are out of control at times. It really is hard being a parent of a special needs kid - but I wouldn't change it -- I have learned a lot and he has an absolute wonderful personality. But some days a little break would be nice.

[kim21673]

My oldest DS, who is 19 now, has cerebral palsy. He got really sick when he was 3 months old......He was over a year old before he crawled and a few years old before he took his first steps WITH a walker. He is now in college and walks with loftstrand crutches.

I was a single mommy in college when he was little and it was VERY rough raising him alone and making sure he got everything he needed (therapy, early intervention, etc).

He has had two surgeries to help with his spasticity...one when we was 3 to length heel cords, hamstrings and they did a tibia rotation.

When he was 4 they did a Selective dorsal rhizotomy (removed part of his spine and cut nerve chords in his back). It was a pretty indepth surgery that lasted over 6 hours!! Scariest time of my life!!! It took him several months to get back up and walking again after the surgery and he tired very easily almost a year later.

[rach3975]

My 5 year old has global apraxia (a motor planning disorder), sensory processing disorder, hypotonia, sleep apnea, childhood apraxia of speech (which is finally almost resolved) and possibly ADHD. He's getting his tonsils and adenoids out in a few weeks to treat the sleep apnea, and after that we'll be able to get a better idea if his attention and impulse control problems are due to sleep deprivation or a combination of ADHD and his sensory processing issues.

We've gone through good and bad patches, and we've been in a bad one for the last 6 months or so. When Ben is tired (which is at least 30% of his waking hours) he melts down frequently, throws tantrums, throws things, runs away in public places, and generally behaves like a much younger child. DH and I have been feeling at the end of our rope lately, and we're pinning a lot of hope on the surgery. If it doesn't help the behavior issues as much as we hope, we're going to have to pursue an ADHD diagnosis and medication. Nothing else has worked, and we're starting to reach the point where we just can't go on like this much longer.

[haydensmommy217]

my 5 year old son has been diagnosed with speech delay his first words were at age 2 and a half were mom,ball and light. he is now starting to talk for his age level (thanks to his amazing speech teacher) but still has a little bit more to go thankfully hes going to be getting some more speech help in kindergarten. He is also possibly ADHD (myself and his father have it). He has some sensory/motor difficulties, he didn't start crawling till about a year old and starting walking right before his second birthday.

[scrapweaver]

Three out of my four children have been diagnosed with Asperger's . . the youngest also suffered severe speech delay, which is improving all the time. It is full on. I am very very lucky that they are in fantastic schools that give us great support. Our primary school only has 70 kids (used to only have about 40 before my eldest daughter started high school!) so the all the teachers know all the kids - they also introduce programs to assist the special needs kids but the whole class gets to participate . . and they try to encourage tolerance to the entire school, which is not only good for my kids but for everyone.

[SweetMelissa]

My daughter Rachel ( 2 and a half) is non-verbal & uses sign language. She was born with Proteus Syndrome and uses a walker to walk sometimes (only when she's really tired or in a lot of pain).

[newfiemountiewife]

My youngest, Rachael, has been diagnosed autistic, high functioning. She sees her doctor next week, and they do feel there are impulse control issues as well, we'll see what else they say. She is quite high functioning, but has problems, HUGE problems, with focusing on things in school, staying on topic, and thus, she does have an IEP for this. She also has problems conversationally, so they are working on that with her also. We have already seen big gains, we're hopeful that she'll no longer need interventions after this school year if we're lucky. We work hard with her at home too.

[Chels85]

I'm Deaf and have Cerebral Palsy (CP). American Sign language (ASL) is my first lang and English is my second. was born Hard of Hearing became full Deaf in 2008 (blame blasting music on iPod, so be careful lol) as i had struggles growing up with both, i wouldn't want change myself to a hearing person/non CP, i grew up with supportive commuity. it makes me who i am.

just accept/love your child for who they are, adjust to their needs.

[cardinalskate]

My 18 yo brother (who, along with my mother, live with me and we support them) has just been re-diagnosed with Autism after being diagnosed bi-polar for about 12 years. He had also been diagnosed borderline mentally retarded (he'll never have an IQ over that of about a 3rd grader) and ODD. After a particularly violent outburst early last year, he was put in a children's psychiatric ward for 8 months. During that time, they re-evaluated his diagnoses, as well as taking him off ALL his meds so they could do the re-diagnosis properly. Since then, he's been doing much better. He's very prone to depression, so we've dealt with that, plus usual teenage attitude. After working with a job coach for 5 months, he was deemed unemployable, so will have to work in a "sheltered workshop." These are "factories" (for lack of a better word) that do simple, piecemeal things like attaching something together for a manufacturer or even folding towels or things of that nature. Also, he will be moving into a group home at the beginning of September. We are all very excited and anxious. My mother has spent her life coping and advocating for him. This will be the most freedom either of them have ever had.

[hollyxann]

It's comforting knowing that there are others here in the community that know what it feels like. Granted she is not my child but I've gotten her once a week since she was 2 wks old.

I just feel like sometimes it's such a struggle taking her places because she tends to get nervous because of the loud noises and when people come up and start asking questions I don't know how to respond. I don't want her to feel like she's different even though she technically is. I want her to feel normal, and experience the same things everyone else does.

[winipeg1]

my sister who is 20 has Cerebral Palsy and learning difficulties aswell as curvature of the spine. she cant walk and has speech like a baby who has just started to talk, however we can understand what she is saying, she also uses makaton(sign language)
I work in a school for children with autism and severe learning difficulties.

[jessica31876]

My son who is 14 has learning disabilities and was in speech until he was 13. He still has issues with certain sounds but it is getting better. My older son had speech issues as well but was out of them when he turned 12. I believe he had learning disabilities when it came to language but was never diagnosed with them. My daughter has Chiara Malformation and has headaches sometimes as well as dizziness. It is not to the point that she needs surgery from it though...at least not at this point

[TracerM]

My twin sister has cerebral palsy. She had a mild case and it affected her motor skills mostly(walking, balance, and speech). She didn't walk until she was 3 and then she walked with a walker. She never liked her walker. She is married with 2 kids now and you can't really tell unless she is sick or tired and then you may notice her balance being off a little. My nephew also has cerebral palsy. He is four and he doesn't walk yet. He stands while holding onto furniture but not by himself (although he has been trying to do it himself lately). He prefers to crawl around and doesn't really like to use his walker. He doesn't speak a lot. He has a few words he will say but he struggles with speech. He is very smart, understands everything, and is in preschool. He is one of sweetest, happiest kids you will ever meet. He is really only behind in motor skills. He wears glasses (and has since he was a baby). They thought he was blind at first also but he isn't.

[Tracie Stroud]

Great thread! It's wonderful that we can support each other. Our son Noah, 4, has autism with severe communication delays. He's been in early intervention since he was 2. He goes to special ed preschool at the public school here, and it has been fantastic for him. We're also having his hearing tested soon since we suspect he may have a hearing impairment as well.

[hollyxann]

They want my niece to also be tested for autism because she has some mannerisms that autistic children have. We've always attributed them to her blindness. She gets tested sometime in the next few months I believe.

[Nevada Jen]

My 13 y.o. DD has a recessive genetic condition that looks a lot like CP. She has had two major strokes. She starts middle school this year and I am extremely unhappy that they only have her program at school in very bad neighborhoods. I am dreading it. I suspect I will be very much in need of support this year.

My DS has some speech issues but I honestly forget he is technically special needs too! He functions just fine if he talks at a 6 year old level. The problem comes when he talks at his normal 12th grade level. If he would just say, "I don't know" instead of "I don't know that I have made a conscious determination as to that question as of yet," no one can even begin to understand what came out of his mouth!

[mdbsktcase]

Both of my two children have autism. They are now 13 and 14. I have homeschooled them since they were 6 and 7. There are times when the road is hard but on the other hand there are so many blessings that I would never know had they not had their disabilities. There's a good blog that I found for families with someone they know that has a disability. It is called ChosenFamilies.org . I'm not in anyway affiliated with it. I just find it a great support.

[Andrea G]

Wow, it's so nice to know there are so many people around so we can all support each other. I totally want to check out that blog that Michelle just mentioned!

My son is almost 14, and is special needs. Looks like most of you have a diagnosis, count your blessings, we don't have a diagnosis, and it's not for a lack of trying, either. I could give you a tour blindflolded of Primary Children's Medical Center and Shriner's Hospital in Salt Lake City.

He's a sweetheart, and we're incredibly blessed how loved he is, and that the kids are soooo good to him. He's develpmentally delayed (don't you love that generic, catch all phrase that basically means they have no idea what's wrong). He's considered pretty high functioning, and does pretty well, if you were to compare him to a regular child his age, there's a definite difference and he's definitely behind, it's more like he's 9 or 10 yrs old in a lot of ways.

We seem to struggle with basic needs: eating, breathing, sleeping. We've had numerous sleep studies, and we're improving the sleep stuff, but it's still not great.

He's had breathing problems since he was a baby, and we never leave home without a nebulizer or inhaler. We're down to waking up in the middle of the night (when he has a coughing fit and can't breathe) and giving him breathing treatments to about 2 to 3 times a month, which is really no big deal. But we treat ongoing breathing problems daily to try to keep it that way. Allergy season makes it hard for him.

He has major dental abnormalties and it takes a minimum of 40 minutes for him to chew each meal (and that's if he's being fast, it's usually an hour) and that's only for the main course, he pretty much skips side dishes or else it would take him 1.5 hours to eat. We've been stuffing some garden veggies in and he's been eating those.

He also has major feet problems and has had 2 surgeries on both of his feet in the last year and will be having more surgery in November.

He's an adorable, happy (most of the time) boy that we feel incredibly blessed to have him a part of our family. I'm blown away at what an awesome experience he's been having in Jr. High (I had been dreading it for years and had been very skerred for the future) the kids have been wonderful to him, which I had never expected or anticipated. He had to do all of elementary at a non-neighborhood school for K thru 6 (where they had a special ed program since our neighborhood school did not), so when we were able to ::finally:: go to the nieghborhood jr. high, I was a little worried. Thank heavens he knows lots of kids from church and made plenty of new friends and the special ed program is amazing here. So blessed.

Things could be so much harder and worse. We're very thankful he does as well as he does and I feel like we are enjoying him now, more than we have his whole life. A lot of things have improved with age. We definitely still have our trials, but it's all worth it.

[TanyaH666]

My cousin Sid, who has lived with me for most of his life, has Downs Syndrome. Though he has this disability he has always been an amazing child. He is just slow. The first time he walked on his own was on his 2nd birthday and even now (he is gonna be 25 this year) it might take a couple tries to fully understand what he is saying. But he did graduate high school a couple years ago and works a full time job with the after school center he used to attend after school!

[Susan Bartolini]

My son was born extremely prematurely and has been diagnosed with Global Developmental Delay. Speech is his biggest problem area and I would put him at the communication level of a 6 year old (he is 8). He also has OT & PT needs and has lots of sensory issues (though those are getting better).

It is good to see so many of us moms dealing with similar issues here!

[Sharon Kay]

I have 2 of my 3 children diagnosed with special needs ...both are teenagers ... one has ADHD and sleep disorder ... manageable with meds totally!

The other teenager has PDD-NOS (autism), anxiety disorder, ADHD, sleep disorder ... and Aspergers although it is not on his official diagnosis due to "change coming in diagnosis and better to keep it at PDD-NOS" ... or some kind of excuse it seemed. The 2nd one is a lot harder to manage ... so many issues (and teenage attitude on top of it all) ... although on the upbeat ... he is FINALLY sleeping better than he has since about 2nd grade ... they changed his sleep meds at my insistence ... and it is working great!!