Raising a disabled child

In My Humble Opinion
1

My oldest son was just diagnosed with mild autism (“pervasive developmental disorder – not otherwise specified”, to be exact), sensory integration disorder, and he has severe speech and developmental delays. I’m relieved that we finally have some sort of diagnosis, after two years of doctors and therapists telling us “Oh, he’ll catch up eventually,” or “I have no idea what’s wrong with him.” At least now I have some better ideas of how to help him.

Of course, I’m dealing with the usual guilt issues. Did I do something wrong with him? Hold him too much? Hold him too little? Feed him wrong? I know rationally that it’s probably not my fault, but parental guilt seems to be hardwired into me. Also, now I’m super-paranoid about my two younger sons, and I’m monitoring their progress fanatically. I hope I calm down a bit soon, before I drive them crazy. We’ve already had a scare with #2, when there was a chance he had cystic fibrosis (he doesn’t), and with #3, when there was a possibility that he would be born with spina bifida (he wasn’t).

I’ve been invited to a local support group for parents of autistic children, so I think I’ll go to that next month. They were meeting tonight, but I had surgery today so I wasn’t really up to it.

I’d like to hear some stories, advice, coping ideas from anyone who has experience raising a kid with a disability.

2

I’m not a parent, but I’ve worked with autistic children. Do you mind telling us how old your son is? I assume he’s fairly young. Depending on what state you’re in, there are special ed programs he’ll qualify for before he’s old enough for elementary school. Birth to Three is a program in at least a few states, and many states have SpED programs for 3-6 year olds too, which offer services and therapies (speech, physical, psychology etc). Were I you, I’d begin investigating them soon, since fall is right around the corner and early intervention is key.

3

Make that meeting next time- you’ll find a lot of help and support there. Also, there are many support services out there for him, you, and the whole family. You don’t mention how old he is, but most if not all states have extensive early intervention services from birth to school age. After they go to school, the school system takes over.

Just off the top of my head as far as programs that may be available to you are Early Head Start or your state’s equivalent, respite care where a state-certified caregiver is funded by the state for several hundred hours of free time for you and the rest of the family every year, the state Department of Developmental Disabilities, and Social Security (if your family qualifies financially). Do avail yourselves of the programs and services out there- they can make life so much easier.

No one really knows what causes Autism or spectrum disorders, but they absolutely do know that parenting style does not cause it. Don’t even waste your energy feeling guilty but transfer that energy into helping your son.

You probably will go through a period of grief. I mourned the loss of the “perfect baby”, and then I felt guilty that I was mourning- aren’t parents supposed to love and accept their child for just who they are and not want perfection? Fortunately, I was going through some very effective counseling at that time, and she helped me out with that tremendously. That might help you also.

I have 7 years of experience with the system and even though I do have some frustrations at times dealing with that system, I know some of the ins and outs. If you need someone to talk to or direction, email me.

4

Just to clarify, my son is not autistic, so I can’t give specific advice about that.

5

PDD-NOS is the new “You’ve got a problem but we’re clueless.” That is not a shot at the pros (psych medicine is a whole lot younger than physical medicine and we are a long way from understanding it), but it means that you will have to stay on top of the situation, because next year you are liable to get a different diagnosis.

One thing I would suggest would be to find a counselor who has a good reputation dealing with kids with issues so that your son can talk out his reactions to the world as he grows older. Counseling is not a panacaea (and a bad counselor can introduce a whole range of new problems), but finding someone who can help your son verbalize what he is experiencing can be a great aid to you in figuring how to deal with the situation.

If your son is adopted, I have some further suggestions, but I do not know whether they would apply to a birth child.

6

MissGypsy: feelings of guilt are going to be there. Please keep in sight that they are normal. That does not make them accurate. You are going to have those feelings no matter what, that is a given. That is what is called being human. Above all, realize you are not going crazy, you are being normal, and sometimes normal takes a little sorting out. And listen to elfkin477 and trublmakr. Each of them is a darn sight smarter than me. Best wishes, seenidog.

7

He turned 5 yesterday, and we’ve been fighting and arguing to get him help for two years now. He’s been in a special ed preschool and will return there in the fall, and he gets speech, occupational and physical therapy at school. He’s had 6 months of private speech therapy, and we’re meeting with private occupational therapists now to find the best one for him.

Now he’ll be going to a clinic for autistic children at Univ. of Virginia for continuing evaluations, so there’s another step in the right direction. Dealing with all the bureaucracy to get him services is just so frustrating. Every time he’s been referred for another test, or evaluation, or another specialist, it’s taken at least 2-3 months to get the appointment. (And I had to reschedule his first U.VA appointment, because it was the day before my due date for my youngest, so I couldn’t travel that far. Took another 6 weeks to get that done.Grr.) I knew there was something different about him, and you just wouldn’t believe how many professionals we’ve had to go through to get some answers. Incidentally, after my hundreds of hours of internet research, I nailed the diagnosis myself; I handed my husband a printout about PDD-NOS, and said, “Is that him, or what?”

Thanks for the input. I’ll look into that respite care idea, as that might save my sanity (or what’s left of it). And yeah, I’m grieving, too, because he’s my firstborn and I just always assumed he would turn out perfect. Intellectually, I know it’s a natural stage and it will pass, but it sucks right now.

8

That brings back a lot of memories for me. I, too, have had to fight for my son to have services that he needs and qualifies for. I’m glad to hear that your son is already getting a lot of help and that you’re pointed in what appears to be the right direction at this time. Diagnoses can change, though, and treatment options vary according to who you talk to. Be as informed as you possibly can be, cultivate relationships with people that can expedite things, and never be afraid to speak to supervisors and member-services organizations if things get too wrapped up in red tape. You have to look at yourself as an advocate for him- the services he gets now can affect his future greatly. I’ve had to be very assertive in standing up for him, but that’s okay. Maybe he’ll have to do the same for me some day.

The first step towards receiving respite care and such is to apply for SSI. With SSI comes a vast array of services and insurance coverage.

9

My son also was diagnosed with PDD-NOS (and a bunch of other things)… You’re doing all the right things, don’t give up and don’t EVER think any of this was your fault. When things happen and we can’t pinpoint the cause, we tend to blame it on something easily identifiable, whether or not it’s accurate.

Despite all the frustration you’re feeling, you’ve actually made a lot of progress. Jut hang in there. The most difficult time (for us) was when my son was young and we were first grappling with what was wrong with him and getting the proper services. Once that’s been set on the right track, things will be much easier. And as your son gets older, he will become more able to deal with what’s going on and with treatment his symptoms will probably also become somewhat (and possibly much) better.

Good luck!!

10

I’m a firstborn who didn’t turn out rigth 'cos I was female… blush (but I didn’t mean to! When I was filling the paperwork to be born I asked the angel taking care of us little souls waiting in line “what’s this F/M for?” and he said “doesn’t really matter” - silly featherback didn’t know my mother)

No experience with autism, just piping in with good wishes.

11

I have friends whose brother is severely mentally disabled, with symptoms very like your son’s. It’s been terrible for the parents. Fortunately, some years ago, they found him a place in sheltered accommodation; and so, after nearly 30 years of caring for him, they have some peace.

You may have a very hard road ahead of you, and I wish you all the best.

12

Daddy of 2 sons, one autistic, one Asperger’s.

PDD seems to be the “gateway diagnosis” - few if any autistic kids I’ve met were not first diagnosed with PDD. (but this is anecdotal - no cite)

I’m going to try and tell it like it is, which isn’t pretty, so I want to share that my oldest (autistic) boy has made truly stunningly tremendous progress in the last 6 years - to where I’m actually starting to save for college for him. (With my youngest we’re just starting the whole thing - again)

The first few years are critical. The more help/therapy/wraparound services, the better. Between wraparound and speech, ot and other therapies, my oldest was clocking well over 40 hours a week at one point in time. This costs lots of money, which is why you will constantly be fighting to get him what he needs, you’re competing for limited resources. Learn the law. Learn what an advocate is when you’re given the runaround. Understand that the people you need to get to sign off on services for your kid deal with many people like you, each with tremendous needs, so stay polite - but your kid cannot afford you to be meek.

Three things to watch out for - they sneak up on you:
You may well feel more guilt :the more you learn about autism, because there is so much more you could be doing with/for your kid that might help - if only you didn’t need to eat or sleep.

Your marriage (if applicable) will come under significant stress. Supposedly the divorce rate for parents of kids “on the spectrum” is north of 80%.

Your other kids will get less attention than if their sibling was not autistic, likely significantly less.

Things that help:
Support groups are awesome! You can learn so much there: from how to cut short the runaround you may be getting from the school district to which therapists may not be worth your time - all kind of tricks of the trade. And then there’s the support aspect thrown in for free… There are likely multiple groups in your area - check out more than one, to find some that fit your personality.

Families can be a huge resource. Grandparents or uncles can give the NT (Neuro-typical - read non-autistic) siblings some of the attention you maybe can’t give them, and can sometimes help you get a break.

Become an expert. Know that there’s much people don’t know about spectrum disorders, but there is a growing body of work on what therapies appear beneficial - so read up. Retain your sense of scepticism, though: there’s a lot of bad science out there, and sometimes it’s hard not to be seduced by a magic solution, especially if it’s presented well - There are huge debates about chelation for example.

Understand that taking care of getting your kid the help he needs will literally be a full time job, at least for the first few years. 40+ hours/week of your time

Don’t be afraid to ask for help. People will help.

You’re going to be overwhelmed, but that will pass. This can change your life dramatically, but it’s ok. You are going to meet some of the most beautiful people, ever, in the kind souls that have made working with kids like yours their lives’ mission. You will be able to make more of a difference in his life than you likely would with a “normal” child. You are not going to want to change anything even if you could. You are going to have moments with your son you couldn’t have with any other kid - he’s going to make you so proud!

And, one day, the movie Rainman is kinda funny again.

13

spergers) will be in third grade this fall. He gets excellent services from the school that inlcudes speech (pathology- different from articulation), social skills training and physical therapy.

I remember hearing that “caught up by two” catch-phrase alot. I officially gave up the extra worrying on his third BD. I found it just too stressful. I still monitor his growth and development extrememly closely, I just quit the worry part. Because you had three big worries with three different kids, it may be harder to quit.

Worry and family can be rough. Family memebers would say “You’re just looking for problems” or “There’s nothing wrong with him that a good spanking wouldn’t cure” which left me wondering if, that there was nothing wrong, why should I spank him? Anyway, I didn’t find many family comments helpful.

I supplement my son’s school services myself. I like “Social Skills Activities for Special Children” by Mannix (which I always like to add is good for non-special children also, LOL). I also used a couple of books both called “What Would You Do?” mixed with some other stuff I borrowed or put together myself for “The Safety Game”.

My son is very bright and friendly and very teachable. He’s also socially clueless and easily taken advantage of.

14

Hey, where’d my first line get off to?

Add “My son is diagnosed with Aspergers…”

15

Thanks again, everyone, for all the info and encouragement. I now have some more ideas of how to proceed to get him some more help, which I never knew about before.

He’s almost completely non-verbal, but he’s communicating with sign language, sometimes in 2-3 sign sentences. He speaks about 5 words, 3 of which he picked up from his younger brother (who is 18 months old, and has been using words for 6 months or so). One thing I’ve noticed is that my 18-month-old is using sign language to communicate, too. Those two use a combination of words and signs to talk to each other.

I’m a stay-home mom (partly because it’s cost-prohibitive for me to have three little ones in daycare, and partly because I’ve been pregnant for the majority of the last couple of years). One thing we’re struggling with is how to get him to extensive therapy sessions, because of transportation, childcare and scheduling issues. My husband runs his own business, so his schedule is on-call 24/7.

Right now, we’re so sleep-deprived that we can barely function. The baby is 7 weeks old, and refuses to sleep. Neither one of us has any family in the state, and the closest relative is 2 hours away and works full-time. Our parents are too old and too far away to be much help, so the only help we’ve had so far has been my husband’s ex-wife (I know, it sounds odd, but she’s helped out more than anyone, and she loves our kids almost as much as her own).

Yeah, I am overwhelmed, battling a nasty case of PPD myself, recovering from surgery, sleep deprivation, and just total exhaustion. I really appreciate what you’ve all shared, both the good and the bad.

16

Also, the birth to three programs refer the kids to the local elementary school after 3 1/2 years. Be sure to check with your local elementary if you have not done so.

17

{{{MissGypsy}}} Welcome to the club. One rather wishes it were a LOT more exclusive.

I’m a parent of a nearly-12 with high-functioning autism, and a 9-year-old with nothing so easy to define except that “possessed by demons” has seemed most accurate at times :eek:

Kee-rap - I had no idea it was that high. Typo Knig and I are doing OK… when we quip “I can’t leave you, I’d have to move” it really is just a joke. OTOH, my brother - whose older son is far more autistic than my Dweezil, and whose younger son is far more “possessed” than my Moon Unit… has just announced he and his wife are splitting up after 20+ years :frowning:

Others have provided much good advice. Link up with other parents in your area (they’ll have a lot of good advice on the school system). Fight for ABA therapy provided by the school district, if there’s any way (and if it seems appropriate for your child). Many school districts don’t offer it at all, other offer it but you have to pretty much blow the superintendent to get approved for it (read the BJ thread before doing so :))

Let yourself grieve. This whole “Welcome to Holland”… well, I’ve always said it’s bullshit. It’s not swapping a trip from one great place to another great place, it’s more like swapping a trip to Italy (or Holland) for a trip to a war-torn country. You can learn to appreciate the beauty of that war-torn country but it’ll never be the unadulterated joy of the trip to Italy.

Find the humor in things when you can. When Dweezil was 3 or 4 he wanted to go trick-or-treating, he had a vague idea of the joys of getting CANDY. I brought out a Barney costume I’d gotten for him. He freaked. So I decided “Screw it, he’ll go for halloween as Rainman”. Nobody commented on his costume or lack thereof (and no, I would not have told them he was “Rainman”) and he had fun. A year or two ago, he wanted an email account and had some train-related suggestions for the user ID. After he left the room, I told my husband “I know - ‘TRAINMAN’”. Yes, we are going to hell :smiley: (and no, we would never have done that to him, but for a few minutes we were howling with laughter). A friend once asked “How can you laugh about all this?” and I said “Well, it beats crying”.

Dietary modifications can prove helpful in some cases - we’ve seen some improvement with our son by removing casein (milk protein), really by accident (took him off dairy for a few days when he was 3ish because he had a tummy bug, and saw speech / behavior improve). We’ve gotten pretty lax about it during summers and for the most part, the behavior degradation is pretty minimal now. He’s likelier to wet the bed when he’s “flying”, though ;). Abbie Normal reported that his daughter improved quite a bit, in this thread.

Would we “cure” our son’s autism if we could? 9 years ago our answer would have been an unequivocal “HELL YES”. The years have wrought many, many changes in him (and us) and we can now see the utter sweetness of this child and the recognition that if we cured the autism, he wouldn’t be our Dweezil any more. He’d be a completely different child - likely minus many of his most lovable qualities. We were just having this conversation a couple of days ago and the answer just might be “HELL NO”. Or maybe yes - because he faces so many difficulties due to his syndrome, but it would not be so easy a decision.