By The Wiz

1. I’ll start out. My kid has CAPD, or APD. Compensatory strategies, stories of success, would be helpful. Thank you.

   Comment #1 by The WizJanuary 4th, 2008 at 9:57 am

2. […] AND….while we’re on the subject, (I know!  Longest post ever!) we have created a new page for parents with children who are on the spectrum.  Basically, we want to put parents in contact with one another.  Have questions about your new baby with Down Syndrome? (bek, I’m looking in your direction)  Post them up there.  Have answers for her?  Post them up.  Need to know who has done what for their child with Autism, and has it helped?  Go check it out.  Found a great website that helps identify symptoms of APD? Great.  Get it up there. Please.  Get the picture?  […]

   Pingback #2 by Mormon Mommy Wars » Primary ConcernJanuary 4th, 2008 at 10:01 am

3. My 2nd son has mild autism. He is mainstreamed, with speech and occupational therapy. I would love to share our experiences with early intervention. I would also love to get advice for how to help him after Kindergarten. My big question right now is:
   How do I go about applying for Social Security and long-term Medicaid for him? I’ve heard that he can qualify for these and it will help with his medical and theraputical expenses. Anyone have any advice?

   Comment #3 by Mother of the Wild BoysJanuary 4th, 2008 at 1:16 pm

4. My one-year-old son (third child, second son) has spina bifida and hydrocephalus. He just started crawling (HOORAY!!!). I am incredibly blessed by the early intervention people who come out every Monday and do physical/occupational therapy with him.

   Comment #4 by KerynJanuary 4th, 2008 at 1:20 pm

5. My middle son has autism. At first everyone told us it was mild… and now that he’s older, I would put him more in the moderate to severe end of the spectrum. He gets speech and ot at school and we also do speech again on our own during the week. He does hippotherapy (horseback riding) once a week and we are looking into more ot…

   Comment #5 by MelissaJanuary 4th, 2008 at 2:05 pm

6. My oldest child (a son, 5 1/2) was just diagnosed with Aspergers (it’s high on the Spectrum). He’s in kindergarten and mainstreamed and getting speech, OT and some special ed services. I’m really glad we were able to get his services. I had kept him home for preschhol, and was going to homeschool him (I thought he just had a really sensitive temperament and was emotionally immature). But seeing what sort of special help they can give him, I know I could have never replicated all that at home. It is rather sad and scary to send him off every day, though.

   Comment #6 by snow whiteJanuary 4th, 2008 at 3:34 pm

7. what are CAPD and APD btw?

   Comment #7 by snow whiteJanuary 4th, 2008 at 3:34 pm

8. Ok…google is my friend! My son has a little of this too. He always passes the hearing tests but he often mishears or ignores things people say, unless you make physical contact or get close to his face. How does your child manifest his symptoms?

   Comment #8 by snow whiteJanuary 4th, 2008 at 3:42 pm

9. My oldest son, Noe, just turned 5 and has autism. His autism was diagnosed as mild, but his language acquisition has been slow, so he is likely in the moderate range right now, although his compliance and behaviors are good….so I’m not exactly sure where he falls.

   We do private ABA (Applied Behavioral Analysis) 12-15 hrs a week, private speech therapy and he goes to an ABA preschool run through our county’s school district. We have been on and off the gf/cf diet. I didn’t see a lot of results, but would urge other families to give it a try as it does seem to help some kids. We also have him on a vitamin regiment, have done yeast treatment and are looking into other biomed treatments.

   My big questions right now are how to successfully include him in a regular classroom. I think I will put him in a self-contained ABA kindergarten, but hope to start including him in a regular classroom in 1st grade. Others experiences and advice are much appreciated. My personal email is jrazz22ataol.com

   Thanks for this page, Wiz! Great idea!

   Comment #9 by JenJanuary 4th, 2008 at 4:30 pm

10. snow white -

    He ignores people, needs mucho repetition, and will answer questions later than you asked. It takes him longer to process what you are asking, so he often gets ignored in preschool if the teacher is covering multiple subjects, one right after the other. That’s hard for him - “one right after the other.” He’s still working on thing one, and the other kids have moved on to thing three.

    He “shuts down” when there is a lot of background noise, he simply cannot follow what is going on. I guess it’s better than him acting out, which he does do on occasion, but usually it’s the shut-down thing.

    Comment #10 by The WizJanuary 4th, 2008 at 6:26 pm

11. I am due in April with a baby girl who has Trisomy 21, or Down Syndrome. Since we don’t actually HAVE her here yet, I have lots of questions…. but a few answers for those that just want to know the basics.

    Other T21 Mommies….. come on over to my blog (or show me yours). She is our 4th child….

    Comment #11 by bekJanuary 5th, 2008 at 7:34 am

12. I think this page is a great idea, so thanks for putting it up. My oldest son, Spencer (almost 3), has mild autism. He’s going to be starting a preschool at the elem for kids with developmental delays next week, and we’re really excited about that. We’re also currently looking into biomedical stuff (we’re starting a GFCF diet and looking at other things). Since our younger son is allergic to soy (and sensitive to dairy, and some other foods we don’t know about yet), we think it’s likely Spencer is sensitive to foods, too. Oh, and my e-mail is katiekins22 (at) yahoo, if anyone wants to chat about any of this stuff.

    Comment #12 by VadaJanuary 5th, 2008 at 7:50 am

13. Our son is 10, he is cognitively and physically delayed, although he can walk and talk, his skills are below where he should be. He is about 3 developmentally. He is autistic, has an refactory seizure disorder, a fairly rare genetic disorder, and some other letters, ADHD, ODD, sometimes we call him the alphabet soup boy because of all the letters. He is getting a g tube next week because he refuses to eat. I am hoping this page takes off, I sure could use some support! Thanks.

    Comment #13 by Jo in UtahJanuary 6th, 2008 at 9:02 am

14. My oldest son has PPD-NOS and probably SPD. He attends a special ed preschool which includes speech and OT. I am looking into what my insurance will cover in terms of private OT and possibly group therapy (for all his social problems).

    My younger son has a few delays including speech. He has speech therapy and a special teacher who comes to the house once a week.

    I am having a hard time with my son’s preschool. I get very little feedback from his teacher and none from the speech therapist and the occupational therapist. Is that normal? One of the reasons I am looking into private therapy is that perhaps if I am paying them they will have to talk to me!!

    Comment #14 by MarieJanuary 6th, 2008 at 1:27 pm

15. Keryn, Although I was not involved and can’t advise on anything, I wanted you to know that my nephew also has hydrocephalus. He has had numerous surgeries and (here’s why I’m writing) is healthy and whole and currently in flight school training to become a commercial pilot. There are many advances, now more than when he was a babe, and you can have hope. You have my blessings and prayers.

    Comment #15 by s'meeJanuary 6th, 2008 at 4:46 pm

16. I have a nine-year-old daughter with Asperger’s Syndrome and a four-year-old with Autism (not sure yet how “severe” to characterize it).

    My daughter started out school mainstreamed but was never able to adapt to the gen ed classroom, so she is now in a self-contained classroom for students on the autism spectrum, where she is doing better academically but still has some behavior problems. I have her in counseling and also on an anti-depressant–it seemed to be helping her a lot initially, but now we are having problems again, and I’m not sure if she’s outgrown the dose or if it’s hormones or what. She’s come so far in the last couple years, but I’m at my wit’s end with her again. She is not ready to be mainstreamed again.

    My four-year-old has speech/communication delays. He had stopped speaking pretty much altogether around age 2 1/2-3, but he’s been in speech therapy (in addition to OT) for the last year and has made great strides in that area. He’s a fairly agreeable child (so far, knock on wood), and he’s become much better at self-regulating, but he’s still difficult to communicate with–not near the level I’d expect for a four-year-old. He’s very much in his own world. On the other hand, he is responding very well to therapy.

    Marie - you should be getting more feedback from the teacher/therapists at your son’s school. You can’t support them at home if you don’t know what they’re doing or trying to accomplish. How often do you see/talk to them? You should definitely ask for more information. I send my son to school with a spiral notebook that the teachers and I can communicate with. That way they know what is going on at home (insofar as it’s pertinent) and they can jot notes down about what’s happening at school. Perhaps you’re already doing something like this and are having trouble getting them to write in the book–ha–in which case, you are entitled to call an IFSP meeting (I’m assuming you’re on an IFSP?) and put it in writing on your IFSP what sort of feedback you expect, the method, frequency, etc.

    Wow, this is a long comment.

    My e-mail (if anyone is interested) is madgiraffewife@yahoo.com.

    Comment #16 by madhousewifeJanuary 7th, 2008 at 10:43 am

17. Thanks, s’mee. It’s always awesome to hear great success stories!

    We’ve been really blessed with our boy’s hydro–he got his shunt when he was three weeks old, and hasn’t had any infections or troubles with it–it’ll be a year on Jan. 12. Of course, shunts don’t last forever, so he’ll definitely someday get at least one replacement, but we’re grateful that his first year has been as easy as it has. He doesn’t seem to have any brain damage associated with the hydro, but he does have the Chiari II malformation of the brain common to kids with spina bifida. This usually doesn’t have too many problems associated with it — usually they are learning-disability related, like having trouble with spatial things, ordering and prioritizing troubles, stuff like that. He might need some extra tutoring in school, but he shouldn’t have any problems being in a mainstream classroom.

    Of course, he’s all of one, so who knows? All I know is he’s really really cute.

    Comment #17 by KerynJanuary 8th, 2008 at 8:39 am

18. Hopefully not a threadjack, maybe a question for later?

    My brother has a 3 yo moderately autistic boy. By no means am I suggesting that I am an expert in the awesomely complex world of autism and I don’t claim to know what is right for this child.

    That being said, how much “should” they be doing for this child? They send him to a special ed preschool but refuse any other therapy suggested. He is violent, non-verbal, no sign language. What is typical therapy at this age?

    Comment #18 by Leticia in OhioJanuary 9th, 2008 at 3:08 pm

19. well, why are they refusing other therapies? Is it cost? Or some other reason? It seems logical that if it’s a special ed preschool, he would be working with therapists there. That being said, there are specific therapies that can be practiced at home that can help the behaviors of more affected children. My son has Aspergers and is very mild, so he just gets OT and Speech, and works with a Special Ed teacher on social awareness and adaptation, so I don’t know much about those specific therapies. It’s also going to be hard to get them to try stuff if they don’t want to, though.

    MadHouseWife: Awesome idea about the notebook! I have been exchanging notes with the teacher, and the Speech teacher sends home a “homework” folder, but a notebook would be great to keep it all together!

    Comment #19 by snow whiteJanuary 11th, 2008 at 3:04 pm

20. *unrepentant multiple poster*

    Wiz-
    That’s something we have to work with as well. my son does best in small groups. He doesn’t shut down with excess stimulation, though, he gets really wound up. Even as a baby, he was fine at home, but as soon as I would try to take him to homemaking or some church activity and he would throw a huge fit. He does better now, especially if we tell him ahead of time what will be going on so he’s warned, but his emotional sensitivity is still there, and we still usually have to leave early or walk the halls with him at some point.

    Comment #20 by snow whiteJanuary 11th, 2008 at 3:11 pm

21. My 4 year old son was diagnosed with ASD - PDD- NOS. Don’t you just LOVE acronyms? He is about 1 year behind in language, and although he has Autism, he LOVES people and interacting with people, but we have most of our issues with “communication” and physical boundaries.

    Comment #21 by Lindsey WyniaJanuary 12th, 2008 at 11:15 pm

22. Snow White: I don’t think it is a matter of funds for them. In all honesty I think it is a matter of pride mixed with depression. When the school district tried to send an OT out to their house they refused. They refused speech therapy as well. They have repeatedly talked about how various therapists visiting their house, or going to various office appts would be a waste of time.

    Any perspective on how we can better support them in getting help for their child?

    Comment #22 by Leticia in OhioJanuary 15th, 2008 at 12:32 am

23. Lindsey–that’s where we have most of our trouble too. Except that now he’s in school, we have to deal with some small motor deficiencies as well. He refuses to hold his pencil the right way (he’s a fisty) and he doesn’t use scissors very well. Despite his trouble with personal space and social cues though, he just loves people. That makes me a little more worried that he might become a bullying target later on, though. Maybe I’ll homeschool in middle school.

    Leticia–I guess I can see how they might get discouraged, especially if their son is pretty affected. OT and speech really do help, though. I was amazed when we went in to our evaluation, because the results are so technical. I’d never even heard of “crossing midline issues” etc, and I know I wouldn’t be able to replicate the results of all their experience and training if I was trying to do it myself. I guess the only advice I would have is to praise what they are doing right, and to praise any sign you see that their son has potential. My hubby was depressed at first when we discussed the possibility of our son’s dx, but I kept pointing out to him how smart our son is, and how the dx doesn’t change who he is, it just changes what we will need to do to help him reach his potential. Although he still can’t write legibly, he will eventually be able to, and not many other kids his age would listen to a 20 minute lecture on the human eyeball, or tell you what a mormon cricket or a wetapunga is. We just have to appreciate him for who he is and what he’s capable of, and eventually the rest will catch up.

    Comment #23 by snow whiteJanuary 15th, 2008 at 1:25 pm

24. Snow White - Thanks, girl. I needed some encouragement for myself to keep encouraging them. Very good perspective.

    Comment #24 by Leticia in OhioJanuary 17th, 2008 at 12:53 pm

25. Leticia in Ohio,

    I read your post about your family and it reminded me of some of the folks I work (have worked) with. Some parents sorta need to be spoon fed a little bit of info regarding the implications of having a special needs child. It seems like parents in general have to go through that whole grieving process at their own pace and I’ve met many who have said- yeah my child has this syndrome, but we’re not gonna to ST or OT or PT. And they’ve come around on their own terms (but they’ve needed lots of support and education from others to show them the benefits). Just a thought.

    Comment #25 by hayngrl101January 18th, 2008 at 8:06 pm

26. I have a six year old daughter who was diagnosed with 22q.11 Deletion Syndrome, aka DiGeorge Sequence (DiGeorge, Shprintzen, VCFS, etc.) Some of her symptoms are immunodeficiency, heart probs, misc. medical junk, learning disabilities, etc. Right now she is getting ST and OT at school, although we have sought them privately as well in the past. Her language seems more behind and there are a variety of deficits in her language… she sorta sounds like she could be CAPD also, but its difficult to differentiate with all of the features associated with her syndrome. She is such a special girl and we love her dearly, but sometimes her tendency to be emotionally sensitive makes one weary. And she is also significantly behind in social skills… she is mainstreamed kindergarten with a full-time aide who helps to keep her on task and reteach stuff.

    So. Any other 22q parents out there?

    Comment #26 by hayngrl101January 18th, 2008 at 8:24 pm

27. Mother of the Wild Boys:

    Help after kinder… my nephew is also on the spectrum and his folks advocated for a full-time aide who stayed with him and helped during school. I believe he was always in a mainstream classroom, possibly with some pull-out time. Anyway, the aide was the same person clear through elementary school and they slowly phased her out so that he could function independently in middle school. They had an excellent experience with the aide.

    As far as SSI and Medicaid go, it sort of depends on what state you live in. So what state do you live in?? Sometimes each one has a different way to apply for the programs, but with SSI, you can just go to your local Social Security office and pick up the application. Sometimes it is beneficial to have a social worker or service coordinator (someone who works with families of kids with disabilities) to help coordinate the application process and get all the documentation needed.

    I will say that SSI does have some income limits, but if you qualify for even $1, your child will automatically be covered by Medicaid. But. The income limits seem a little low to me…

    If you are denied SSI based on too much income, then the next step is to apply for the Medicaid. Seems like each state calls it something different- Katie Beckett Waiver, Katie Beckett Medicaid. This Medicaid program is a federal program and some states opt not to participate in it. So first, you need to find out if your state participates… I love this program because its for the child, regardless of family income/resources, and will pick up the tab on stuff regular insurance might not cover- therapies, ST, OT, PT, DT, and medical supplies if needed. Most service coordinators should know about it and be able to help apply (in Idaho, you can apply directly thru the dept of hw)…

    I hope this helps…

    Comment #27 by hayngrl101January 18th, 2008 at 8:36 pm

28. I’m happy to see this blog. I’m mom to a wonderful 20 year old son who was born with spina bifida and hydrocephalus. He is medically complicated and fragile. He is a wheelchair user and has cognitive delays. He is also our happiest child and a great example to others. He is an Eagle scout! We have definitely struggled to advocate for him not only in school but also in the church setting. It is great to see the church come out with the new disability resource page at http://disability.lds.org/disability/eng/ . It is definitely a step in the right direction to educate people.
    It has been hard to watch other young men go away on missions and know that is not a possible reality for out son at this time. Anyway, I would be happy to share our experiences or help anyone with younger children that have spina bifida.

    By the way, we have been on the Katie Beckett Waiver for several years and it is indeed a blessing.

    Comment #28 by CindyJanuary 24th, 2008 at 10:12 am

29. I have a 4 year old autistic son. Currently he attends an ABA all day preschool that the state funds. However, after preschool my fee is more than my house payment per month even with the scholarships and help from the state. He has made so much progress in the last two years and I’m afraid when I put him in the public school system he will regress. He will be going to a special needs kindergarten. I’d appreciate any experiences with special needs kindergarten in the Salt Lake Valley. Michelleb (at) byu.net.

    Comment #29 by MichelleJanuary 24th, 2008 at 10:30 am

30. I saw the word “ignore” used in reference to kids with APD a couple times in this thread, and it bugs me. They’re not ignoring you. They can’t hear you.

    I know you didn’t mean it the way I took it, I’m just sensitive to this stuff, having lived my whole life with APD and not knowing it. I was teased for my whole childhood/teen years for being an “airhead.”

    Comment #30 by Susan MJanuary 24th, 2008 at 11:45 am

31. Cindy, I have SO many questions. What do you do with a latex-precaution kiddo and elastic? Or shoe rubber? My 13-month-old (let’s call him G.) doesn’t have latex allergy, YET, but a very high percentage of kids with spina bifida develop it, so we try to keep him away from latex.

    I don’t want to bore people with too much spina bifida stuff, but I would love it if you wanted to email me: volcano at gmail dot com.

    Comment #31 by KerynJanuary 24th, 2008 at 6:19 pm

32. I can understand that, Susan, and I’m probably one of the ones who used it. I just meant that that’s how it appears to outsiders. My son also mishears things I say, although he always passes the hearing tests. It’s mainly when he’s distracted (and I’m distracted, since it often seems to happen while I’m busy making dinner and he comes in to ask me questions). He does better when I speak to him much closer to his face.

    Comment #32 by snow whiteJanuary 28th, 2008 at 10:06 am

33. my oldest child (a girl) has mild autism. She is 7. She is in mainstream school. And her school is awesome. We have most of our trouble with her at church. She wants to in with all the other kids, but most gospel topics are way over her head. Numbers and letters she understands. Talking about God and spirits, etc just doesn’t register. I don’t really know what to do with her at church. We’re trying to get her an aide called for her, but it’s hard to find anyone who can do it well.

    I’d love to talk with other parents who have daughters with autism. They are much harder to find. I’m really scared about puberty starting in a few years! You can contact me at my blog or at carolyn527@gmail.com.

    Comment #33 by apple pieJanuary 31st, 2008 at 7:45 am

34. I ave a 10 year old daughter with Aspergers and we have come a LONG way! When I first heard this 3 years ago I left work, so I could parent her…very hard choice when you are a SOLO parent, but for me she came first at this venture. I became her advocate, coach, friend, and facilitator as well as mom. I am ever so glad I made this choice. IT has been HARD and weary but miracles are being seen: she is in the regular classroom stream with the assistance of an EA(part time) with the exception of language. WE gave her coping skills not meds, changed her diet, role played lots, gave her lots of structure, and love and she seems to be doing well. For that I am so very grateful…she is becoming an amazing caring preteen.

    Comment #34 by HollieFebruary 1st, 2008 at 2:27 pm

35. We just welcomed our sixth child to our family 3 months ago. After he was born we found out he has Down Syndrome. We are learning so much and just loving our sweet Preston. I enjoy sharing the ride with other moms on this same road.

    Comment #35 by RachelFebruary 1st, 2008 at 7:46 pm

36. I am the mother of a six year old son with Asperger’s Syndrome. He was diagnosed about 18 months ago after many appointments and many people telling us “there sure is something wrong with him but we do not know what it is”. He has been regressing lately and had boughts of high anxiety but we are working through these. He is very smart and reading has come naturally to him. He can sit down and read 4-5 beginning chapter books a day and he is in Kindergarten. Numbers and order is also a major fascination for him.
    The major issue that I am having, and it is my issue, is the lack of support from family and those who are not around my son on an intense daily basis, actually acknowledging that he has Asperger’s. I feel very alone. My child looks like a typical developing six year old on the outside but on the inside he struggles to traverse the world around him. How can I get my family to understand this and offer more support?

    Comment #36 by KimFebruary 19th, 2008 at 8:58 pm

37. That’s an important consideration, Kim. We have that trouble, too. My son looks and (mostly) acts completely normal, so when he’s wigging out over something minor or throwing a frustration fit, people often assume it’s a discipline problem. I think in general, most people have never even heard of Aspergers, and although they have heard of Autism, it’s hard to connect the two, because usually only the kids who are low on the scale are presented. I think it’s just good to research it yourself and then share materials with your family.

    Comment #37 by snow whiteFebruary 20th, 2008 at 10:05 am

38. I tried doing that, but it felt like my efforts were futile.

    I asked my youngest sister to watch my daughter for a while- we juggled school schedules during college and my lil sis ended up getting really involved in therapy stuff and doc appointments. As a result, she became quite familiar with the issues at hand and I was able to confide in her some of the devastation we felt when we received a diagnosis and also when my family failed to offer support. Now, my sis understands and often helps to educate the rest of the family. They still have not fully come around.

    The other thing we did was create a family outside of our own. We have gotten in contact with other families with similar issues and we’ve also included the health care folks, therapists, etc. in that family. So when I am frustrated or feeling low, I can call someone from this group to get advice or just be a sounding board. Its not ideal, but it works…

    Comment #38 by hayngrlMarch 1st, 2008 at 12:38 pm

39. I find with Aspergers people just dont get it until they are trained and trained some more. Because it is very much a “social” illness even 5 years into it I get stares when my daughter has a melt down. There are VERY few that I can leave her with and I am a solo parent. I cant tell the number of conversations I have had where I was asked how I discpline…errr! Those close to us are now just getting it. By the way when she is having an OFF day I have learnt I need to let others things go to give her the one on one support that she needs.So that means some Sundays we dont get to church as there are often sensory issues at work too ie the bus noise, the feel of tights, the fabric, the light…all of this can work against them…it is about coping one day at a time.When that happens I am fortuante enough to have close friends in the know so they check in. i have found that I have had to build my own support system outside of family. Roo looks like a beautiful 10 yr old who is happy and healthy but each day she goes thru so much that we may never truely understand. BEing the mom of an Aspie’s child is a gift as well as a learning curve. Just remember to be patient and PRAY lots.

    Comment #39 by HollieMarch 19th, 2008 at 3:50 pm

40. I’ll add a little variety…
    My 4 y/o has Leukemia (ALL). It has been quite a ride, to say the least. If you are in a similar boat, I’d love to hear how you get through it all.

    Comment #40 by juliMarch 20th, 2008 at 12:45 am

41. I have been working in the field of disabilities as a social worker for the past 10 years. The last 4 years as a supervisor in Early Intervention. When I lived in Utah I assisted with and wrote a waiver using Medicaid monies for people with disabilities. Anyway, where I am getting is that if anyone needs help navigating the system, let me know. I have experience in all sorts of government and non-profit organizations and can provide whatever my brain has in it for your use. I love these kids and hope the best for them. Please email me at kilpatrickclan@gmail.com if you want or need any help.

    Comment #41 by KatieMarch 21st, 2008 at 9:23 pm

42. Anybody dealing with a baby club feet? I’d love to swap stories.

    Comment #42 by KatieApril 16th, 2008 at 11:57 am

43. My almost 14 year old son was diagnoised with Asperger’s almost 2 years ago. It was such a relief to finally have a name for the problems he was having.
    We just got back from a family vacation to Nauvoo and what a challenge that was for him and us. Between the crowds and the long winded tour guides, he had a very hard time. He so wanted to look at some of the shops like the gun shop, but the tours were so long and boring for him. Add the noise and fumes from all the tour busses (sensory issues) and he lasted only about 30 minutes.
    We are finding as he gets older, his behavior gets more unpredictable and his immaturity become more apparent. It is had to think that he is 14 and starting high school this year (Yikes, that is so scary for me!)
    Church is very hard for him, between the flouresent lights and the noise and of course, the boredom. He had planned on attending Scout camp this year, but we soon realized that it is not a good idea. He has trouble at weekly scout meetings and more often than not we get a call saying he has disappered.
    But on the flip side, he is such a loving child, extremly smart and has such a quirky sense of humor. I hurts me to see him struggle so much. As he gets older, we struggle with the realization that he won’t be doing the “typical” mormon boy things like getting his eagle scout award or maybe even serving a full-time mission.
    Sometimes we feel alone as we deal with this as we live far from family and we don’t feel especially welcome in our ward. It is nice to read all of your posts and see how you are coping with your struggles and to read about your blessings.

    Comment #43 by CindyJuly 19th, 2008 at 9:41 am

44. I am a special ed teacher at a middle school. I teach kids with severe disabilities. If anyone has questions about the school, related services, IEP’s, behavior, etc. I would love to help!

    Comment #44 by JackieJuly 31st, 2008 at 7:44 am

45. My 5 year old son has autism. He was diagnosed 3 years ago, and after a lot of intense therapy he is doing wonderfully. However he is starting Kindergarten this year and is not able to be in a regular classroom yet. Lucky for us our school district offers an autism classroom which he will attend.
    The hardest part for him (and us) are his social skills. He has none, basically. Put him a room full of kids and he will only talk to the adults–and then he will not leave them alone no matter what they do. He also loves to touch strangers, and gets mad at random people for not doing things his way.

    Comment #45 by KasiAugust 12th, 2008 at 10:28 am

46. My 3 year old son doesn’t have an official diagnosis yet, mainly because we moved to another state 2 months before his follow up with the pediatric specialist. What I have been told is Developmental Delays at risk for Autism. I got him into the state early intervention program but only received services for 2 months before he turned 3, when he was supposed to be transitioned to the public school system. However, his birthday is in the summer and so the school district decided “not to follow procedure” and therefore… school starts Monday, they haven’t finished his evaluation and he is not in the system, although I “registered” him in April (signed all the paperwork and did as much as I knew I needed to)and I was assured that I didn’t need to do anything else except be ready when the team called with an appointment for the evaluation. I am incredibly frustrated! Nothing happens unless I make it happen, and yet I can’t make things happen when I don’t know what to do next/what needs to happen next, and it seems as though no one involved at the school district knows either. I am coming to find out that it is incredibly difficult to get anything done. I also can’t give it 100% of my attention having 2 other kids also(ages 4 and 3 months). I must say though that getting my daughter into Pre-K was also frustrating and yet now seems like a breeze compared to this other process!
    I have an appointment with a new pediatric specialist- in January 2009- but I am going to see about getting him into private therapy, and continue the process to get him into the PPCD Preschool (by Monday) so when we do get to go in for the testing and diagnosis that he hasn’t regressed.
    And now I’m going to go before I complain any more! ;^)

    Comment #46 by JenniferAugust 20th, 2008 at 9:58 am

47. Jennifer, where do you live?

    Comment #47 by KasiAugust 28th, 2008 at 12:09 pm

48. My 2 1/2 month old son was born with eyes that did not develop properly during gestation. It is a condition called coloboma, and it has no cure. He has seen a specialist 3 times and has had in depth exams, but all they can tell us is that he can see light and MIGHT be able to see “enough” to have a normal life, or he may be more on the legally blind side of the spectrum. It is all a big waiting game.

    I would love to make a connection with a parent who has navigated the world of a child with special vision needs.

    Comment #48 by AmandaSeptember 12th, 2008 at 10:38 pm

49. Hi All, I have a 6yo daughter who has PDD-NOS. She is also deaf. She communicates through sign language only. She attends a deaf school & is in 1st grade there. Her IEP includes a one-on-one aide for her in the classroom. She would be completely lost in class without a one-on-one aide. We hope that with the aide this year she will make paying attention in class a habit because we don’t know how long the district will be willing to pay for her aide. If anyone wants to connect with me feel free to email me at fringieshh at hotmail dot com.

    Comment #49 by JessicaSeptember 21st, 2008 at 11:49 pm

50. Not certain if I should post here but what the hey. My 6 yr old has an auto immune disease called vitiligo. Basically the skin looses all pigmentation. It’s not rare but it is uncommon & of course there is no cure. As w/ any auto immune disease once you have one you will more than likely develop others. At this point H is in the medical journals because she is one of only a handful of children who are as severe as rapidly as she is. @ one point she was 90% covered in vit but since we’ve changed our pool from chlorine (we live in Az) to hydrogen peroxide she’s actually developing more “spots” of color.

    We had a huge scare earlier this year as she was loosing her hair (side effect) but it came back. I realize that this might not sound as serious as some of the other issues addressed here but it can be pretty devastating to a child. She’s been teased by children that don’t understand.

    Anyone else out there with something similar or do you know anyone who has this? I’d love to hear from anyone who might even want to know more. Thanks

    Susan - sues2u240@gmail.com

    Comment #50 by Sues2u2September 23rd, 2008 at 5:19 pm

51. Sorry Kasi, I haven’t been on this website since I posted my message.

    We live in San Antonio, TX.

    Good News! Brenden was able to start in the first day of class! He is doing well…except for his obsessions- those being long hair on little girls (he plays with it and usually rips chunks out), and running away from where he is supposed to be.
    The hair issue is one we have been working on for well over a year and his older sister knows it, the poor girl has lost so much hair to him and I feel terrible about not being able to get him to stop! I’ve had to cut her hair short because there were so many chuinks missing it just looked wrong, but that didn’t stop him for long. Any ideas for me to work on from his side of the issue would be greatly appreciated!
    I am pretty sure he thinks the running away thing is a game because he wants to play and chasing him is playing right? I know he runs as a way to deal with over-stimulus, at least the OT gal told us it was most likely a sensory issue, but it is getting him into potentailly dangerous situations at school and home so any ideas to help with that would be welcome also.

    Comment #51 by JenniferSeptember 24th, 2008 at 12:51 pm

52. I have a 10 year old son with ODD (oppositional defiant disorder), ADHD, depression, and OCD. The doctor believes that puberty will either help or will show that he is bi-polar. As his parents we have so many worries. Is there anyone who has a child with similar struggles? I really need to hear some experiences with positive outcomes. We have tried so many therapies and behavior programs that I feel like an expert on some of them. I would love to help anyone. And like many of you, we struggled for years for an IEP. His third grade teacher told me that he was just lazy and that there was nothing wrong with him.

    Comment #52 by ChristySeptember 25th, 2008 at 8:24 am

53. I can’t tell you how things will turn out, Christy, but I have a few similar children with ADHD and Sensory Integration issues, that also suffer from depression and anxiety and ODD behavior. There is a lot to worry about, but there is also a lot of hope. I have the same concerns with one son in particular, that he may turn out to be bipolar when he’s older. My oldest is a teenager and is turning out really pretty good, although I worry what will happen when she gets out on her own if she decides to not medicate. I just try to stay as informed as I can on the subject and do the best I can with them, and PRAY like crazy for guidance.
    I’m also looking for any mothers out there of a child with microtia or atresia (missing or underdeveloped ear) as I try to figure out what’s the best route to reconstructive surgery for my middle child.

    Comment #53 by ShellieOctober 4th, 2008 at 10:08 pm

54. Oh, and that first lady at the top, the Wiz, my middle child has been treated as if he has CAPD, (no one wants to pay to diagnose him)is he in speech therapy? That has been most helpful as well as lots of visual cues or using touch to direct his attention where it needs to be. And trying to eliminate distractions whenever possible.

    Comment #54 by ShellieOctober 4th, 2008 at 10:11 pm

55. My almost 3 year old was a former 27 week preemie.He spent 99 days in the NICU. He is severely developmentally delayed but we just found out that he cognitive level is that of a 3 year old. He has Cerebral Palsy, a Seizure disorder, Cortical vision Impairment, Scoliosis, Para Ventricular Lukomolatia(sp) (PVL)Which has caused a lemon sized fluid filled hole in the left side of his brain, IVH which is bleeding in the brain that makes the Ventricles larger.. (this is one cause of Hydrocephalus which He does not have).He has limited use of his right side because of the PVL. He is using it more now than he has in the past. He is doing well can sit, roll, army crawl, go from sitting to laying and vise versa, and has just started putting weight on his legs. He starts preschool on his 3rd birthday which is next week. We are SOO proud of him! Come check out our blog and you can see the progress….

    Comment #55 by Em and Zachs MomOctober 9th, 2008 at 12:14 pm

56. I would like to say how amazing my life has been for over 27 years. My daughter was the second girl in the Western USA to be diagnosed with Rett Syndrome. This affects girls. The girls are born looking and acting normal. Within 9 months to 24 months the girl goes through changes within. These angel girls wring their hands which is the symbol for Rett Syndrome, bite themselves, loose gained abilities. Some range from mild to severe just as Downs Syndrome and other special needs syndromes. My daughter is a gift for our family. She is a loving smiling angel. I will add she is spoiled to the core & is a queen in her own right. Socializing she loves, giggles when she receives attention. To hug and kiss her helps when I am having a not so fun day. Our Heavenly Father blessed my family with having her in our eternal family. These wonderful girls are loving. My daughter is at the severe end of the syndrome which means a 75% curviture of her spin which means she cannot sit for long. She has 5% air space in her right lung which means her left lung does the work. Laying down on her side is her life most of the day. We move her to keep her comfortable. Of course Disney keeps her happy. I have a cousin whom is blessed to have a Rett girl also but she is at the mild end of the sphere. She has been able to walk and function more then my daughter. We are not sure about a true genetic link. As of the past two years she seems to becoming more verbal which has surprised us. Our sweet angel talked until she was 2 years of age, was able to feed herself and play with toys. This was lost. Her favorite activities are hugs, cuddles, drinking hot chocolate actually anything chocolate, watching Disney movies and being noticed by visitors. Her mind is sharp, she knows whom likes her. Through Priesthood blessings she has received her life has been made easier in ways she would not of otherwise. My daughter is a dear dear friend, listens to my heart aches with a sweet smile and leans into my arms.
    Always remember that special needs children bring challenges in a family but the positive out weighs the challenges.
    We do not feel we are anything special, our daughter is the special angel. Our other children spoil her and have involved her in their lives.
    When she does pass through the veil she will be blessed with a perfected body & we can walk together, talk together for eternity.

    Comment #56 by Lillie's momNovember 13th, 2008 at 1:22 pm

57. Amanda (#48),

    My son was born with PHPV (right eye didn’t develop properly) and nsytagmus (”shaky eyes”). I don’t know a lot about coloboma, but I am on a couple of Internet groups for parents whose children have vision issues, and I know a few of them have mentioned coloboma as part of what they are dealing with. I would highly recommend one these groups to you, the group called APHAKIC (on Yahoo groups). Keep in mind that most of the parents on these groups have different eye problems and the coloboma is not their main issue. But maybe you can find some direction for resources to learn about coloboma. Good luck!

    Comment #57 by LauraNovember 14th, 2008 at 2:47 pm

58. To all y’all,

    My sister has two children, a boy and a girl, who were diagnosed on the spectrum. Her son got great therapy (in TX) and is now in kindergarten (in AZ) in a main stream classroom with no special assistance required. Her daughter is in a priority preschool right now and progressing. (She will now look at you when you speak to her! This is a major step and thrills all of us.)

    My sister, who is a certified teacher and worked in special ed., said one of the most helpful books she’s read so far is The Out of Sync Child. It helped her understand some of the issues relating to SPD that her children deal with. Just a thought for those of you dealing with SPD and looking for information.

    Bless you all for being brave for your children!

    Comment #58 by LauraNovember 14th, 2008 at 2:52 pm

59. I have 4 kids from 5 down to 19months. My baby has an ASD and also Chiari malformation 1. She has good days amd bad days and we are waiting for her to either get More sick that the doctors Must do brain surgery to save her or we have to wait until she is old enough to make it through surgery. Any way you look at it, I need good advice from moms on how to help her with her pain.
    Thanks,
    up all night….

    Comment #59 by KeraDecember 2nd, 2008 at 8:41 am

60. I’m striving for the same mission as yours - to provide more support for us special needs mommies. I’m always glad for more support - glad I found this site!

    Comment #60 by Tara @ kidzDecember 7th, 2008 at 2:08 am

61. I have 2 special girls. My 13 year old has Autism and my 8 year old has Down Syndrome. Just for fun we have 3 boys in between are special girls who are all typical. I have been through a lot and am still going through much. I really want/need a friend to talk to…..

    Comment #61 by JulieJanuary 7th, 2009 at 6:35 pm

62. i am studying to become a Special Needs Assistant and am currently completing a project on Hydrocephalus. can anybody give me a few ideas on how to assist the inclusion and integration of a child with hydrocephalus into a classroom situation? how to help the child mix with peers and form bonds? id really appreciate any help.

    thanks

    Comment #62 by ornaJanuary 8th, 2009 at 5:46 am

63. I have two boys on the Autism Spectrum my oldest (11yrs.) has almost recovered. He has mainly social issues left. My younger son (9yrs.)is quite severe but is in a great ABA based private school. We have done a lot of biomedical interventions with him and he is on the GFCF diet. We are really fortunate to live in Massachusetts where services can be really good depending on where you live.

    My life is so much better than it was five years ago. It’s amazing what a difference a couple of years can make.

    Comment #63 by MarjorieJanuary 26th, 2009 at 11:00 am

64. I have a 6 yr old daughter diagnosed with PDD-NOS. She did not have language until she was 2, and then it was only one word statements to identify objects, but never to ask for them (descriptive, but not functional/pragmatic). My husband and I went through many ups and downs with people we thought were friends but were not - who actually said they did not want their children playing around a child on the spectrum because, after all, they REALLLYY don’t know that it is not contagious yet. (WHATTTT?*!!!@$!!!) My daughter is very sweet, wants to interact, and does not act out - just doesn’t have the language typical for a child her age. She has made FANTASTIC progress in the last year, so much so that her educators are discussing declassifying her. While I do think eventually that will be appropriate, for now she would still have trouble without the special services.

    There is some info I want to pass on to others with same/similar situations. Not long after my daughter’s diagnosis, my husband confided that he did not speak until he was three. He then told me he was in special needs classes until he was 9. When I inquired about this with his mom, she confirmed that he was special needs until 4th grade and that she was told that his IQ was 72 when he was 7. He actually told me stories about spending days in school to learn to tie shoes, steps to plant a flower, etc - all vocational stuff. At age 10 he was given a WRITTEN standardized test, as required by the state. His score was outrageous - putting him in the 99th percentile. Thinking that this was certainly a mistake, his teacher retested him. Basically same result. The school then re-evaluated him. A few years later, he ended up in the gifted classes, albeit with some modifications. He liked using earplugs when he took tests and had to be in the back of the classroom as he absolutely could not sit still. Ultimately, he went to an Ivy league school for college and is today an orthopedic surgeon.

    I have no idea how my daughter will ultimately develop, but if there is one lesson that I took after hearing my husband’s story, it is that I will not close any doors for her, nor will I let anyone else.

    Comment #64 by CatherineFebruary 2nd, 2009 at 7:23 pm

65. Love this site!! I have a 22 yr old sone with CP and hydro, has had 112 surgeries, is wheelchair bound, can’t feed himself, sit up, roll over, etc. He is the best and so funny!!! He is the easy one! I have an adopted daughter with RAD, (reactive attachment disorder), she has NO conscience,lies, steals, etc. She is 11 yrs old and there is no support/doctors/therapists that work…Any thoughts??

    Comment #65 by lvquiltergirlFebruary 10th, 2009 at 6:01 pm

66. I have a 16 year old son with Aspergers. It is wonderful to read of all the children that are being diagnosed earlier than my child was. It helps to have a diagnosis to work with. My son has his learners right now for driving. It will probably take a couple of years before he will be driving on his own. There have been so many heartaches, grieving, and joy this young man has brought into our lives. Would I take away his autism? I used to pray for that. After all we’ve gone through, I would not. He has accomplished so much and he wouldn’t be who he is!

    Comment #66 by MarilynMarch 20th, 2009 at 8:19 am

67. All five of my children are all on the Autism Spectrum - High -functioning classic Autism, Aspgerers, PDD-NOS.
    I also have Aspergers. My Husband has shadow traits.
    I am willing to offer support or answer any questions anybody may have.
    You can check out our family adventures on my blog.

    Comment #67 by ShantelApril 20th, 2009 at 12:46 pm

68. I think parents should not get confused with ADD or ADHD or Mild Autism. When my son was 3 or 4 years old, I was told he had ADHD, which did not make sense because he is not out of control and able to sit still. I was by another doctor that he had ADD, WRONG!! Another doctor told me Mild Autism. Parents should look into (APD) Auditory Processing Disorder: (The Hidden Disability) I read through it and my gosh, this is exactly what my son has and I just found out recently by his speech pathologist who is not a doctor but truly believes that this is what my son has. Doctors think they know your child but they do not. The only person who truly knows their child is the parents. I as a parent, never truly agreed what doctors told me. My son is in 7th grade and is 4th and 5th grade level at school. He is improving but still struggles. Any suggesting that parents can give me. Please Help!!

    Comment #68 by HelenApril 23rd, 2009 at 9:21 am

69. this reply is 4 comment#3 mother of wild boys:you can go to www.socialsecurity.gov and fill out an application on line. and you should be approved the first time.you should also ask your pediatrician about the (r.e.m) program, it is health insurance for children with special needs, with this insurance your child can go to any specialist or doctor without a referral, because we all been down that road, its hard to get a referral if you dont have a 24-48 hour notice and (r.e.m)eliminates all that,and they help in alot of other ways also,everyone with a special needs child should apply for r.e.m. just ask your pediatrician and she submits the application for you.good luck with everything!!!!

    Comment #69 by MICHELEApril 29th, 2009 at 7:09 am

70. comment#48 by amanda:your not alone, my 3 year old daughter jadyn was also diagnosed with colobama,and it is such a unpredictable,impatient,waiting game. jadyn has other issues too,she was born with infantile spasms,so our ophomologist said that jadyns brain is telling her not to see,shes been diagnosed with having a visual maturation delay,then she was declared as being legally blind,and now she says jadyn will see that there is nothing wrong with her vision, that jadyn will use her eyes when her brain tells her too,so it is a waiting game,but just be patient and hang in there.does your child have any other special needs?

    Comment #70 by micheleApril 29th, 2009 at 7:33 am

71. I have a 17-year-old son who has High Functioning Autism (HFA). He is the 2nd of six kids. We have been through, and are still going through, a lot with him. I sometimes wonder what is in the future for him, but most of the time I take it one day at a time. Sometimes it’s just nice knowing we aren’t the only ones dealing with issues that come with raising a child with autism.

    Comment #71 by Mary StoutMay 27th, 2009 at 4:30 pm

72. This reply is to comment #63, Julie. My oldest child is 12 years old and he has Down syndrome. I also have three other children. Life around here is busy, busy, busy as I am sure your home is as well. I would love the chance to chat with you.

    Comment #72 by TrishJuly 30th, 2009 at 8:56 pm

73. I have a twenty three year old daughter with spina bifida. Looking for other young adults with spina bifida for her to communicate with.
    dswillis@prodigy.net

    Comment #73 by Stephanie WillisAugust 30th, 2009 at 4:36 am

74. I too am a mom of a child with High Functioning Autism and all of the challenges of raising a high maintenance child by myself. His diagnosis was just a month ago, although I’ve suspected for some time. My first instinct was to connect with other moms of children on the spectrum. My second was to look for other LDS moms with children on the spectrum. I have yet to start any type of therapy or treatment with him, as I do not have the support or assistance from my ex-husband, who has requested a second opinion.

    My son is my whole world. He is my everything. I have great hopes for him and have worked, and will continue to work, very hard to help learn all that he needs to be happy and successful in life.

    Comment #74 by LadybugSeptember 24th, 2009 at 1:57 pm

75. I have a son diagnosed with PDD-NOS/autism…he is 10. His cognitive age is anywhere between 2 and 5. He is actually learning to read and communicate better only because he has an absolutely terrific teacher. I personally have not had him living with me, due to a divorce and an ex husband that believes he is better able to care for him that I. I suffered a sevier bout of depression, and rather than be supportive he chose to name call and disregard my needs (blah blah…don’t feel sorry I don’t, I’m over it..really..really I am…LoL) Any way I choose to be on the outside and let ex raise him. Funny thing is..since ex re married his special education (oh did I mention he is a sp. ed teacher too) wife is unable to care for my boy either..she’s all about placing him in a home, or getting more DSPD funding for others to care for him..not that I don’t agree, it’s just ironic is all. Sorry for all that suffer in the life of handicaps. I know the fear, stress, anxiety, dread, and absolute sense of failure that goes with it. I love my boy and would do anything if he would be able to have a fulfilling life, but that is not to be. But here I am, a woman that has learned that he is perfect, and will live with God someday. I however, the woman that gave birth to him and fed him and changed him and cried and worried and agonized over him, must work and strive and toil, serve and be perfect in the eyes of God to live with him…I don’t get it, and I don’t believe it any more. Good luck every one. Any one with questions can e mail me or see my blog.

    Comment #75 by MindyOctober 5th, 2009 at 10:42 am

76. Love this! Hi to all you fabulous mommies. I have 4 children and my 4th son was born with Spina Bifida and Hydrcepholous. He is beautiful and such a blessing to our family. Christopher is almost 2 and is starting to take a fe steps with a walker. I would love to be in contact with any moms out there going through my same experiences. In his 2 short years I have grown and learned so much and I am always anxious to learn more from positive optomistic moms out there.

    Comment #76 by BeckyOctober 24th, 2009 at 8:48 pm

77. Well I have five kids and my oldest has ADHD. My 2nd son has ’something’ and I am not quite sure what it is. I know it is probably very mild compared to everything else I have read on here. I just need some advice from anyone who is in a similar situation. This almost 9 year old boy is WONDERFUL when he is good. But then all of a sudden when something happens (which I normally can’t figure out yet) he is just out of control. He gets into this mood and we can’t get him out of it for quite some time. He has taken his skateboard and banged it against the front door. He has kicked a hole in his wall. He gets mean with his siblings by pushing or shoving or hitting them. He just acts so different than what he normally is. When he went in for his interview before he was baptized the bishop told me that he was the most prepared boy he has ever interviewed for baptism. And mostly he is pretty good. But when he is in this mood it almost erases the times I remember him being good. What can I do?

    Does anyone have any similiar situations?

    Comment #77 by LisaNovember 8th, 2009 at 8:21 pm

78. Lisa, your son sounds like my 2 boys. They have both been diagnosed with pediatric onset bipolar disorder which is treated differently than adult bp. My 14 yr old is also on the asperger’s spectrum somewhere. Anyway, pediatric onset bp manifests with rages which have no apparent trigger, and often the child has no memory of the episode. They kind of “blackout”, and when they are again coherent don’t understand why they are being disciplined for events that occurred during the blackout. These children can cycle ultra rapidly- often within an hours time they may show several mood changes. I would recommend that you find a psychiatrist who specializes in pediatric disorders. Good luck. My boys are finally stable after 3 years of medication.Life now is good. Most of the time.

    Comment #78 by hennchixDecember 31st, 2009 at 10:54 pm

79. My one and only Daughter, yes a girl, is Autistic. She will be 4 in less than a month and she only has 2 words and 3 signs but I do my best at trying to understand her. About 3 months ago she was given another diagnosis of Kabuki Syndrome which lead us down yet another difficult road of medical problems. The doctors found a hole in her heart, which she will have surgery on later on this year. Currently she receives Speech, OT, PT, Music, Horse, Developmental Therapy on top of an Autism specific early intervention classroom. …. I get exhausted typing yet going through all this on a daily bases - It’s a full time job

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    Comment #85 by carry on luggage sizeApril 16th, 2010 at 6:13 pm

86. I have a child with Aspergers Syndrome. He is 11 years old and usually a very loving child, except when he is in a full blown meltdown. We currently live in a Branch, but haven’t attended there in over two years. It was at the Branch (converted building - horrible sound proofing) where my son would have these awful meltdowns in Primary. We are talking meltdowns that involved yelling; screaming; throwing and trying to take off his clothes. Two years ago I knew I had to do something different, so we moved him back to the Ward (before the Branch was formed). From day one he has not had a meltdown. We asked our Branch President and Stake President if we could have our records moved (since he was doing so well in Primary and in Scouts) and was denied. Our Stake President said it would “open Pandora’s box” and be a “learning experience for him”. I am so discouraged with this all mess and am seriously thinking of going inactive. I can’t grasp someone that is supposed to care about us take such an uncaring view about my autistic son.

    Comment #86 by Dawn WestMay 28th, 2010 at 9:26 pm

87. I had a special needs child, Charlotte, who passed away at age three last year. She had partial trisomy 16 and partial monosomy 9. She was our first child and the light of our lives. Since she was born we have had another child, Ella, and adopted a baby girl, Ava. And…then we found out we are going to have another little girl in October, Lily, who has the same diagnosis as Charlotte had. Having already traveled this road but knowing it is never the same twice, I am out looking for new groups and such to help me again…the second time around.

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