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jess_g
11-14-2010, 07:39 PM
Hi just wanted to introduce my son to everyone. I posted a while ago on the suggestion board about adding in this forum as I find it hard to post my questions and issues about my son in the lounge since he does not fit in that well and a lot of what I do with him doesn't seam that normal to many folks (like the fact that he went to Target with me the other day and did not bump into anyone or knock anything off the shelfs which made my day). I am hoping there may be a group of moms out there that have similar experiences to share.

My son is a former preemie that is now 10 and doing pretty well. He is smart and funny and happy but he has delays in fine and gross motor skills and speech. He has had so many medical tests done on him but so far they have not found a cause for his delays.

Anyway I just wanted to say hi and see if anyone else wanted to share their story.

Thanks, Jessica.

sariana
11-14-2010, 09:44 PM
I would love to share but don't have time right now. I'll be back later!

Pepper
11-14-2010, 09:59 PM
Hey there,

I'm glad you suggested this forum - I'm on a couple of different needs-specific parenting boards, but i'm hoping that this one will evolve into a good fit for me, too. DS1 is 4-1/2, adopted from Korea @ 5-1/2 months. His cleft lip & palate were fixed here and he had speech & language delays...as he's gotten older and into preschool, it's become apparent that he has other challenges as well. We are on a wait list to get a full developmental eval but he's hyperactive, impulsive, sensory seeking, a little anxious, and has no clue whatsoever socially (though I personally don't think it's Asperger's since he expresses HIS emotions and needs pretty well).

DS2 is 20 months, adopted from Korea @ 13 months and is just the sweetest little thing ever. Which is good - he doesn't seem to hold a grudge at DS1 at all, no matter what the behavior-du-jour may be :-)

Uno-Mom
11-14-2010, 10:06 PM
[QUOTE=Pepper;2922441]
DS1 is 4-1/2, adopted from Korea @ 5-1/2 months. His cleft lip & palate were fixed here and he had speech & language delays...as he's gotten older and into preschool, it's become apparent that he has other challenges as well. We are on a wait list to get a full developmental eval but he's hyperactive, impulsive, sensory seeking, a little anxious, and has no clue whatsoever socially (though I personally don't think it's Asperger's since he expresses HIS emotions and needs pretty well).

QUOTE]

You describe my godson perfectly (except that he's 12 now and was adopted from India at six). He has a complicated rare syndrome but it's getting more and more obvious that there are some secondary diagnoses happening.

I'm so glad this forum got started. My girl seems fairly typical but I'm very interested because of my godson. And also, my profession is with folks who have developmental disabilities. I just started working with more kiddos, up til recently I've only worked with adults. I'm finding it very different, working with the children. There was a real need for this forum!

lalasmama
11-14-2010, 11:48 PM
So pleased to see this board now! :)

I'm Mimi, permanent foster mom to 6-year-old Lala (as well as "extra person" to SO's kids "Easy" and "Challenge"). La's been with me for more than 3 years now. She's got ADHD, some anxiety, and some minor learning disorders, assumed to be caused by in-untero drug exposure. However, she's doing 100-times better than most meth-babies, so I try to remember that some ADHD, anxiety, and minor LD is a blessing compared to what a lot of parents get when there's meth exposure!

Gena
11-15-2010, 12:40 PM
Thank you, Jessica and the mods for this board.

I've posted about DS's issues a lot, but I think it's good to have a thread where we can all share our kids' diagnoses.

DS is 6 and in the first grade. he is partially mainstreaming this year and doing very well.

DS was officially diagnosed with autism a week after his 3rd birthday. He has hyperlexia (a different way of processing language) and dyspraxia (a motor planning disorder) as features of his autism. He has made amazing progress, but still struggles with verbal language, social interactions, transitions, and sensory issues.

Additionally, DS also has oculocutaneous albinism. We are not sure which type, but suspect Type 2. (He does have some pigment, so we know it's not Type 1. ) DS was under investigation for this dx for years before it was finally confirmed (and reconfirmed by second opinion). As a result of the albinism, DS has complex vision problems. However, his vision is considered very good for someone with this disorder. He has extreme farsightness, extreme astigmatism, foveal hypoplasia, transillumination defects, and misrouting of the optic nerve. Due to these, his best corrected vision is 20/40-20/50 (again, this is very good, since many people with albinism are legally blind) and he has reduced depth perception. He is also very photophobic and needs to have his eyes protected from the sun.

Over the summer, we discovered that DS has a chromosome 19 microdeletion. This is so rare that no one knows what the clinical significance of it is.

sariana
11-16-2010, 01:05 AM
I'm finally back.

My DS was born at 32 weeks, 2 1/2 weeks after I went into preterm labor with no warning signs whatsoever. He is now 6 and in first grade. His challenges include the following:

-gross motor delays, including issues with his feet. He was a toe-walker and had serial casting when he was 2 1/2. He continues to struggle with muscle imbalance between his legs, and he still walks by "bouncing" on the balls of his feet. Until just a few months ago, he galloped instead of running. He recently was diagnosed with tibial torsion, which in his case causes his feet (esp. the left) to turn out to the sides from the hip. Running is difficult and awkward for him, though he has improved phenomenally in just the last few months.

-"self-care" delays: This has mostly been corrected now. But he was delayed in all those things involving dressing himself, brushing his teeth, and all the other little areas where toddlers are supposed to assert their independence.

-social delays: He qualified for OT through our regional center at age 2. By the time he was 3 1/2, he was struggling in preschool, and he got into our disrict's autism program. A couple of years into that, he was diagnosed with Asperger's and ADHD. He remained in special education classes through kindergarten. This year he is in a typical first-grade classroom. Unfortunately, he arrived in first grade as our state (CA) was eliminating its class-size reduction program. There are 32 students in his class, which is overwhelming for him. All in all, though, he is doing quite well.

-continued difficulty with social skills/appropriate behavior: He still struggles with personal space issues, keeping his hands to himself, understanding what is considered "normal" behavior, setting limits, etc. We worry about his ability to make and keep friends because he is a typical Aspie in that he doesn't catch on when people are annoyed by his behaviors. He tries to imitate his peers but misses something crucial (e.g. calls out "See you in school tomorrow!" upon arriving at soccer practice rather than at the end, when it would be appropriate). He is very set in his ways; he doesn't like to play with others because he wants to be in charge and give all the orders. They "don't do it right," so he isolates himself rather than adapt to their games and activities.

I always wonder how many of his issues are the result of his prematurity and how many are just a part of his personality. He is an amazing compilation of my husband and me: I can trace his personality traits and say, "He gets that from me. He gets that from DH. He gets that from both of us." But we have a nearly-3-year-old DD, and she is a completely different person. For example, I see now HOW MUCH DS was delayed in self-care issues. DD wants to do EVERYTHING herself, and she is such a contrast to DS, even now with the age difference. She was only a month early. Is that relevant? Or just a coincidence? I always wonder...

I'm so happy to see this new board because it is so true that parents of children with special needs have unique concerns and perspective.

Sorry this post is so rambling. I think this will be a good forum as people post specific questions and concerns. Trying to reduce my DS to a single post was more challenging than I expected!

elliput
11-19-2010, 12:44 AM
I'm a few days late to this thread. :) I was quite excited that we had interest in creating a special needs forum here, and then promptly forgot to check in on it once we created it. :duh:

As you know, I am Erica. My DD was officially diagnosed with mild to moderate autism shortly after she turned 4. Speech and fine motor are DD's biggest delays, but in the past 1.5y of therapy (speech and occupational) and school, she has made some huge strides. Currently, DD is a mainstreamed special ed kindergartener. She spends some time in the interrelated class, but mostly is able to interact and participate with her class with the aid of a para. Social skills are still a challenge, but have greatly improved also. My biggest fear of DD being in a regular classroom were that the other kids would shun and make fun of her for her delays. My fears were laid to rest when her teacher informed me at the parent/teacher conference that all of the kids in the class just adore her. That made my day.

TwoBees
11-19-2010, 11:07 AM
:waving4:
DD was born at 28 weeks after a almost nearly normal pregnancy (I really enjoyed being pregnant) that ended in preeclampsia. She weighed 2 lbs 1.8 oz at birth, and spent 8 weeks in the hospital. She is nearly 13 months old now (about 14 lbs) with vibrant red hair and a a firey personality to match. She has mild gross motor delays (although catching up fast!) and eating/oral sensory issues. Otherwise she is a very happy, energetic, and outgoing baby, er...toddler. :heartbeat:

I'm also really glad to have this forum.

zag95
11-19-2010, 12:36 PM
Hello-
DD was born with a bilateral cleft lip and palate in Jan of 08. She had NAM (which is like a baby retainer) prior to her lip repair, and has had her palate closed. We are looking at an additional surgery possibly this summer to close a fistula on the roof of her mouth, as well as lengthen her palate.

DD has done great- been doing EI for almost 1 yr- and have been doing private speech therapy since June- we have made great progress, but still have much to be done!

Currently, I am working on beginning the fight with our insurance to cover additional sessions for speech, past the 30 per year, as it is medically necessary for my daughter. I know based on a prior post about speech services (I think it was in the bitching post?), I may have a bit of a fight!

I am happy to see this thread available for support and advocacy for parents and kiddos!

snowbunnies300
11-19-2010, 11:46 PM
Finally a few moments to introduce myself and my three amazing ASD kids! I look forward to having a place to go and ask questions or post praises.

DS1 is 7 and is totally non-verbal. Once in a blue moon we hear part of a word. The only clear word I have ever heard him say was "touchdown" and he repeated it after hearing it on the radio. That was 4 years ago. We hear a lot of dugga dugga, mm, mama, da da. Otherwise it is laughing, giggling, whining, crying, growling etc.. He has trouble with both gross and fine motor. He learned to wave last year. We are so happy he can wave to people who say hi or bye to him! He really likes to listen to music and watch Veggie Tales videos. The Wiggles are also a top item to watch and listen to. He has received therapy since he was 15 months. We first had in-home therapy till age 3. Then began school and therapy at a therapy center (4 hours a week of therapy). He is only in his regular classroom for a hour or so a day. Otherwise he is in the special ed room. He has an aide all of the time. His classmates are accepting of him. Today I witnessed a classmate walk out of their room and say hi to DS when he was walking with his PT. This child didn't have to say hi as he knew all DS could do was wave back. This warmed my heart so much! DS has shown aggression towards family and teachers/aides/therapists but not to other children. We pray this continues. I dread the day he hits another child.

DS2 is 5 and is beginning to talk more and more. He still doesn't initiate speech per say. If he brings you a toy he wants help with he will hand it to you and wait. You have to prompt each and every word to find out what he wants. He can say the word but won't unless prompted. He has been in therapy since 18 months. Kind of the same schedule as his older brother. He is further advance than his brother but still has fine and gross motor difficulty. He is not potty trained day or night (DS1 is only day time trained). We are struggling with this right now. We are so proud that DS2 is starting to "read" sight words. He now knows about 20 sight words. He is in his regular class for about 1 1/2 hours a day. He has a screaming issue and knows that as soon as he screams he gets taken out of the classroom. He loves to be around mommy and daddy. LOVES light-up toys. He lays them all out and then goes one by one starting them. He can have several lined up on the floor and each one going off. It can get noisy to say the least but he is playing.

DS3 started therapy at 2. Only one year of at home therapy before starting school and the therapy center with his brothers. He is non-verbal but has said a couple words here and there. We are expecting that to take off. He is also starting to potty train and I have high hopes he will be trained in the next few months. I think he grasps things faster than his older brothers. He has sensory issues, as do his brothers. It seems like each child is further along in development than the one before. He seems to like many of the same things as DS1.

So my life revolves around 3 kids who's needs I provide for daily. I dress them, toilet them/change pull-ups, bath, talk for them. Many times I feel like I haven't gotten out of the infant stage. I have a WONDERFUL, CARING, SUPPORTIVE DH!!! I couldn't get through this without him. I stay at home so a lot of the care falls on me but when he is home he steps right on in. I don't have to tell him he needs to help or I need time to myself. He is my rock.

I find it hard to hear parents complain about their children. I have to remind myself that they don't know any different. I've lived the ultimate meltdown more times than I want to remember. I get the stares as they see a tall 7 yr old boy flapping his hands and babbling incoherently. I hate how people stare. What I wouldn't do to have them eat different foods. They all have texture issues. What kids doesn't like ice cream? I know...MINE. What kid hates to open presents? I know...MINE. But whenever I start to feel down I remind myself that it could be worse. I could go and sit in the waiting room at any Children's Hospital and see that it could be much worse.

Thanks for listening. I look forward to getting to know all of you better!

Pepper
11-20-2010, 09:39 AM
Currently, I am working on beginning the fight with our insurance to cover additional sessions for speech, past the 30 per year, as it is medically necessary for my daughter. I know based on a prior post about speech services (I think it was in the bitching post?), I may have a bit of a fight!


You may already know of this group, but just in case you don't - Widesmiles has some information up on their webpage about working with insurance cos. They also have a listserv & you can post questions more specific to your state & situation.

http://www.widesmiles.org/

elliput
11-20-2010, 10:48 AM
You just gave me a great idea. I'm going to start a resources thread and pin it.

zag95
11-20-2010, 07:30 PM
Thanks Pepper for that recommendation! I also have a great resource

http://www.waappleseed.org/craniofacialconditions.html
which is a group that helps give you suggestions on advocacy with insurance (there is a 20 pg document on steps to take etc). I am in Oregon, and this group is working on adding resources applicable to Oregon- I have contacted them on behalf of Smile Oregon, a non-profit group advocating for children and families affected by cleft in Oregon, that I am involved with. This is a great resource!

happy2bamom
02-03-2011, 08:32 PM
I've lived the ultimate meltdown more times than I want to remember. I get the stares as they see a tall 7 yr old boy flapping his hands and babbling incoherently. I hate how people stare. Thanks for listening. I look forward to getting to know all of you better!

I totally feel for you. My DS (age 6) has CP, so his limitations are very visible. As hard as our road has been at times, I think that it must be more difficult for parents of kids with struggles that translate into behavioral issues. I feel parents being "judgy" when we are in the waiting room for therapy so I can only imagine what the judgement feels like in more public places. I'm so sorry that people stare at your DC. That would be difficult for me.

happy2bamom
02-03-2011, 08:38 PM
To formally introduce myself: I am the mom of 2 boys. One is almost 7 and was diagnosed with CP at 18 months. The diagnosis was out-of-the-blue and totally rocked our world. There were complication at birth, causing an emergency C section. DS had meconium aspiration, chemical pneumonia and almost didn't live. The first week of his life was very traumatic for all of us, but then everything seemed normal until the diagnosis at 18 months.

Currrently we are facing speech (articulation) problems, gross and fine motor struggles. All of which are related to low muscle tone. DS has been in therapy since 18 months for all of his limitations. We are lucky and blessed to be his parents. He brings us joy and challenges that we could not have imagined. I struggle with bitterness toward the doctors, b/c I believe in my heart that had his delivery been handled differently that he would be completely healthy.

DS#2 is active and healthy, but currently receives speech therapy for articulation.

HIU8
02-04-2011, 11:08 AM
I'm Heather. My son is 6. He has been in OT for 18 months for SID with fine and gross motor delays and motor planning issues. He has made some really great progress though. He also has some issues with pragmatics (he used to not speak to anyone outside family). He now initiates conversations and says hi and bye to peoplw without being prompted to do so. As of now we have no formal diagnosis. We are actually going to KKI on Monday to see a develpmental ped.

Here is what I find very interesting: DS is A LOT like my sister. He is immature (about a year behind socially). My sister was THE SAME way. Although she had learning disabilities that DS does not exhibit-at least not yet. Her friends were a year younger. DS is also like my brother (who may have also had fine and gross motor issues as a kid) (my brother didn't read until the end of second grade, was scrawney and uncoordinated and his handwriting stunk (and still does). My mother feels my brother probably had some SID issues (no tags in the clothes, food could not touch on a plate and he only ate certain foods and nothing else).

DS was born at 38 weeks (so not considered a preemie). He hit all his milestones at the average time (rolling over, sitting, walking, talking, self feeding etc...). His issue was that he was very hard to parent b/c things needed to be a certain way all the time (not so much anymore).
Oh, and DS is currently in a T/K class in a private school for kids with pragmatic issues (and some who in the autism spectrum etc...). He will be going to K next year at a different school.

JTsMom
02-04-2011, 02:36 PM
I guess I'm a few months behind. :bag I post a lot about Jason's issues, but I figured I'd list them all out here.

I'm Lori. :wavey: Jason is my oldest son. He's 5.5. He was born with a complex heart condition- Double Outlet Right Ventricle with Pulmonic Stenosis, a VSD and a small ASD. He was diagnosed at 24 hours old- we'd had no idea anything was wrong during the pregnancy. He had open heart surgery at 3 months, and it was considered a complete repair, but since then, had a cardiac cath procedure done, and will likely need some more work in the future. He has no pulmonary valve. None of his cardiac issues slow him down though! He is closely followed by his cardiologist.

He hit all of his milestones on time, until he got closer to a year old, when he started losing the words he'd acquired. He basically didn't speak, with the exception of "mama" until he was 2.5. His doctors blew off my concerns until he was 3, and I kick myself for not trusting my gut more. I always knew something was off, but couldn't figureout what it was exactly- I still don't know! He is kind of spectrumy, but just misses an official diagnosis. ASD is the closest thing to fitting, but it doesn't fit perfectly. The specialists we've seen all say that some would give him an ASD diagnosis though. His has always been quirky, and goes through obsessive phases, especially regarding electronic and mechanical things. I have never met another child like him.

Around 3, he started speech therapy. People thought I was crazy b/c he never stopped talking, and his articulation was very good. His issue is more with pragmatics. He uses a lot of echolalia and scripted language. About the same time, he was diagnosed with SPD and started OT. Things seemed to get better for a while, but then he stopped making progress altogether.

We saw a neuropsychologist and had a full eval done. He believed Jason's issues stemmed from his cardiac condition. About 6 months ago we saw a dev. ped. She added ADHD to the list, along with various dev. delays.

He has serious behavioral issues. He is extremely hyperactive, has little impulse control, and is a really challenging kid to be around at times. I get the "bad parent" glare everywhere we go, unless he happens to be in his charming mode, in which case people can't stop gushing about him. Every outing is an adventure one way or the other! He's also very loving, smart, and funny. He's an awesome big brother! Social situations are extremelly difficult b/c he wants so badly to play with other children, but his behavior tends to scare them off. That breaks my heart more than anything else.

Recently, we started seeing new therapists, and they are tyring lots of new things with him. I'm really excited, but scared to get my hopes up again. They are addressing things that I've always brought up concerns with, but nobody has ever worked on- auditory processing, for example.

We're getting ready to start up with therapeutic listening again, and are going to try metronome therapy. We're also trying a GFCF diet.

Currently, we are homeschooling b/c a public school classsroom would be a disaster for him. He couldn't handle a regular classroom, but special ed wouldn't be a good match either. That may, or may not change in the future. He does well academically but only b/c I can totally cater to his needs, and b/c his behavior is a million times better at home with me.



I'm really glad this forum is here. I often feel like I'm totally clueless about what to do, who to see, etc., and BBB is the only thing that has gotten me through. I owe many of you a debt of gratitude for your advice and compassion over the years.

ETA: I totally forgot to add that the developmental ped also found a high TSH level, and some very mild food allergies. We're waiting to see specialists for those issues.

melrose7
02-04-2011, 06:58 PM
Hi. I am glad I saw this new forum, even though a few months after it was created. My name is Becky and DD1 is 5.5 and got a PDD-NOS diagnosis just after her 3rd birthday. She also got diagnosed at 2.5 with apraxia, verbal and global. She had fine and gross motor delays, low muscle tone, and is behind academically in K4. I have a background in child development so I was watching for things from birth but was still shocked to get the diagnosis. She met the first year milestones within the normal range but at the end of the normal range. Never really liked the bottle, would rather eat people food. Later I learned she doesn't chew her food correctly and has a tongue thrust. At 2 she had few words and lost some words she originally had, she would walk on her tip toes, she wouldn't step down stairs but would rather sit/scoot down them. Other people would say, she'll talk when she wants to, look how careful she is being, she might be a ballerina when she grows up. But I knew those things were not right.

I waited til she was 2 and then got the first hearing and speech evaluation. Waiting for EI took us to 2.5 and she is so stubborn that a half hour session with a therapist did nothing for her since she wanted to do what she wanted to do and would end up crying most of the session. Besides speech she had OT and special ed. This is when I began thinking there was more going on that her speech. She went to a special ed class at 3 years old and repeated it at 4 also. She got speech and OT and was in a classroom with only 5-7 other kids. She is aggressive towards other teachers and to her peers at times. She will hit and bit, sometimes. After we got the autism diagnosis we had to wait about a year for intensive in home therapy but since sept 2009 she had been getting 20-25 hours a week of in home ABA therapy. Right now she gets the therapy in the afternoon and goes to a regular K4 classroom with an aide. She needs constant help and supervision throughout the day.

She did get potty trained last year over Christmas vacation and that was a great success. She has a handful of words, lots more that are approximations but she finally said "mommy" right before mothers day last year!! we are waiting on approval for an ipad that we can use for a language device for her. she loves music, cards, people, and rough play. she has come a long way since starting therapy and I get sad thinking how far she has to go but she is overall a very happy little girl.

blondflava
03-16-2011, 07:43 PM
Hello everyone, I'm very glad this forum exists. Here's our story..My pregnancy with DD (my only child) was a complicated one almost from the beginning. The PAPP-A test (early pregnancy screen) came back abnormal, and I was told I'll be closely monitored as it might be a result of a chromosome syndrome or, in best case, a low birthweight of the baby. All seemed good though, NT test was fine, at the (early) Anatomy Scan they told me though they were having trouble measuring all baby's parts and they had to repeat it in a few weeks once the baby got bigger. So I had it done again at 22 weeks and found out the baby was measuring small for gestational age. I was put on modified bedrest, scheduled for weekly scans for growth and blood flows. Because my blood is RH negative, I had to get Rhogam shot as well (my DH's positive). As time went on, baby was falling more and more behind, her heart started enlarging and they decided to do a c-section at 34 weeks, after a week stay in hospital and further testing.
DD was 3 lb 6 oz and 13.5" (IUGR baby), very anemic, they had to transfuse blood immediately, her hemoglobin was very low. At 3 days old, after a bone marrow aspiration, she was diagnosed with a Blackfan_Diamond Anemia (inability to make red blood cells), Wolf-Parkinson White heart issue (extra flap in heart) and extra information in chromosone 7. It turned out they were wrong about the anemia, after countless transfusions and blood work, 3.5 months later, her hemoglobin started rising on its own. We have no idea what went wrong in pregnancy and why DD was born small and sick.
Tatyana is turning 2 next month and is doing great, considering such a rough start... She's small, ftt, at only 20 lbs, very petite, trouble gaining weight. Huge issues eating, always has, hypersensitive gag reflex, unable to eat chunks, textures, will gag if oatmeal gets on her hands. We're doing feeding therapy, but we were told by a few therapists that she doesn't need speech or occupational therapy, we were not approved for EI either (evaluated twice). I'm getting a new feeding/speech therapy consult, we didn't get results with only feeding and it's been a year.
Apart from that, she seems to be developing normally, she might be slightly delayed in some areas, but doctors seem to think it's normal considering what she's been through... The eating hurdle is very hard to overcome though and putting a lot of stress on our family :(