Again Semantic Pragmatic Disorder | Autism PDD
Both of you have been so helpful and given me much hope. I love my Gregory more then I thought was humanly possible.
We are in PA. Seems so far we can get some help from the county intermediate unit. We already had our first appt but waiting to get into OT and pych. Everything is wait. I am looking into other things also. I spend alot time researching.
Gregory hurt his foot at vacation bible camp a few weeks ago. He couldn't even tell how. Last night his Dad had him at a park and seems to have reinjured the foot. And again he is unable to help with any details. It's so fustrating. Poor kid is limping again!
I have some more questions, if you both don't mind but we are off to ST so I will catch up later.
Thanks,
Holly
Holly, feel free to ask me anything you want! I remember when
Connor couldn't tell me what hurt. He was about 5 1/2 the first time he
told me his ear hurt, and I thought, "Hallelujah! What a break through!".
When he started kindergarten just before he turned 5, he had almost no
recessive language skills. We got a lot of blank stares when we would ask
him a question. "I don't know" and "I don't remember" were also common
answers. It helps to make your questions very specific. Gregory will have
a lot of trouble processing who, what, where, when, how and why
questions. Instead of asking him "How did you hurt your foot"?, you may
need to try process of elimination. Try this: "Did you hurt your foot at
the park"? if he says yes, then maybe ask "Did you hurt it on the
playground? The slide? Did you have your shoes on"? One question at a
time and very specific. The How question is just too broad. You will find
this approach very helpful once he starts school. You will need to work
with his teachers on how to present material to him in this manner.
Obviously school placement is critical. Some schools just don't want to
deal with kids that don't fit into the classic cookie-cutter mould. Don't be
afraid tour all the schools in your area and see which one feels best for
Gregory. You can always ask for placement in a different school at an IEP.
Connor is starting middle school at a school that is not our resident
school, because they have a much better program for him than our
resident school can provide. I checked out the school last year, and
immediately told his Principal that I wanted him to go there for middle
school. She was a huge advocate for me with the district in getting him
placement there.
Whew! Sorry so long winded and a little ahead of your needs. Just giving
you a little glimpse into the future!
I worry about everything. There is just
so much to learn, and will I be strong enough to fight for all that Gregory
needs??? All of you sound so strong, so together, so knowledgable![/
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I really know in my heart that the dx is true. It's just today was
one of those days where he was talking up a storm, making sense and
talking in sentences. Then minutes before I walk out the door to come to
work (work eves) he has temper, not tantrum but I guess a meltdown. I
had just corrected him for saying a bad word (shutup). hmmmmm then I
feel bad leaving things badly.
Tell me about your experiences with insurance companies and
covering expenses?
[/QUOTE]
The fact that sometimes Gregory's speech sounds normal does not mean
his dx is inaccurate. I means his speech therapy is working! In the year
between 4 1/2 and 5 1/2, Connor went from 2-3 word sentances with
very little recessive language, to being fully verbal with very good
recessive language skills. That doesn't mean he is "cured". Like I said,
this will always be a disability for him, particularly in the area of
academics.
You have the strength to deal with this. It's just new and an
overwhelming amount of info right now. Trust me, you live and learn,
and continue to ask questions of those who have been down this road
already. It's your best resource!As far as insurance goes, I have Motion Picture Health and Welfare, and
they cover a limited amount of speech therapy and social skills. My best
therapy resource has been the school district, and Regional Center.
Thanks! I tried that with Gregory. I still get boo boo foot park but I will keep trying it in other areas.
Gregory has quite the temper any ideas how to calm that?
This whole school thing is scary! I have one more school year before kindergarten and alot more to learn. I plan on sending Gregory back to the same preschool and waiting to get things started with the IU and some type of preschool intervention.
Sometimes I almost I catch myself doubting his dx. Maybe because ds father does not agree with it. My ds sometimes knocks me over when he does things, or comes out with clear and understandable sentences, words etc...... Do you or did you ever doubt that at first?
Connor wasn't Dx'd until he was 7, and fully verbal, so I've never had a
reason to doubt his dx. Sorry, I can't help you with the temper. We had
plenty of frustration, but I can't recall any problems dealing with his
temper.
Don't stress out over school. I only mention it because that's where my
head has been at for the past six years. Odds are that Gregory's speech
will really start coming together in the next year, and your path will be
much clearer as to what he needs. Just be aware that even when they are
fully verbal, the processing disabilities don't disappear. This is
something he will have to deal with for the rest of his life, but will
especially effect him academically.
I worry about everything. There is just so much to learn, and will I be strong enough to fight for all that Gregory needs??? All of you sound so strong, so together, so knowledgable!
I really know in my heart that the dx is true. It's just today was one of those days where he was talking up a storm, making sense and talking in sentences. Then minutes before I walk out the door to come to work (work eves) he has temper, not tantrum but I guess a meltdown. I had just corrected him for saying a bad word (shutup). hmmmmm then I feel bad leaving things badly.
Tell me about your experiences with insurance companies and covering expenses?
You knock my socks off!
Now I have some questions! Jenkx872 what is HFA? IBGECKO advice for a newcomer to this? erly what is VHF? You just described my son! I open to any advice, ideas and to hear your stories. THANKS! My ds is 4.5 years old. He is currently in private speech and on the waiting list for the IU. These symptoms sound familar to you? Late talker, very few sentences, echolalia, can not ride a bike, eye contact getting better, good imaginative play, social skills getting better, not so great fine motor skills, late with potty training, freaks out for nail cutting or combing hair, very loving, loves numbers and letters, very few items that he will eat, gags up anything out of the ordinary etc...... Thanks for the advice and hope. Is your son mainstream school? Sports? Thanks, Holly My ds is 4.5 years old. He is currently in
These symptoms sound familar to you? Late talker, very few sentences, echolalia, can not ride a bike,
Thanks for the advice and hope. Is your son mainstream
Thanks, Holly I am not an expert, so my explanation is simply an explanation from the ST and Ot. My grandson did not speak early, but began short sentences at 2 1/2 He also began to memorize stories like "Cat in the Hat",(echoalia)and repeating them word for word. He has always had a great imagination, and his favourite early games were becoming the characters in whatever story we read to him. "You be the Princess and I'll be the Prince. He also does have a sense of humour, is very demonstrative, and his only sensory issue,( but quite extreme) is food. He lives on almost no food, but maintains his weight as he will drink pediasure, and almost any plain drink. He flaps his hands rarely, but he must be extremely excited to do so. He does feel the need, each evening to run around the house for about 10 minutes. He usually appears quite typical, but has a processing problem, that we are addressing with two types of ST and neurofeedback. He has never had IBI,although we tried it for about three weeks. He loves his own space, and if watching a movie, will totally ignore us.If and when he chooses he can be very social. Asp kids do not fit this description.They lack imagination, and social skills. Rarely have a sense of humour, or understand a joke, and have many different issues. VHF is very high functioning autism. I think the psychologist feels that he has at least of average intelligence, thus this label, although he has never been IQ tested. He does sound somewhat like Forrest Gump, when he speaks, and he often hesitates before responding, but his answers are correct, and he has an age appropriate (or better)vocabularly. Hope this helps, but do not hesitate to ask further questions. My ds attended preschool last school year and vacation bible school this summer. I hope to get him back at preschool this Sept until anything changes with the IU. I really don't think he "gets it" when he interacting with other kids. Just runs along happy as can be, and the rougher the better for him! His Dad thinks he's OK. Thinks he is going grow out of this. Any ideas? You sound like me I bribe/reward my ds for almost everything!:) Hasn't work yet with food but I keep trying. Sounds like your son is really doing well. This gives me hope. Holly So he is actually dx as VHF? My ds does not flap his hands, run around, and just recentlt strated talking in short sentences but everything else describes him? How is your grandson being treated for VHF? Is he in kindergarten yet? Thanks, Holly Holly, I forgot to mention that his meltdowns, are rare, and they are quiet.
He is not a screamer, and has never hit, bitten, etc. He is a very gentle child. The bottom line is that no two kids are alike.I don't know where you
If you want any further info on the type of therapies we are using, my
When I say my GS hand flapped, it was and is, very very occasionally, and only in front of the computer. His stimms are still echolia, and now rarely. He is quite athletic, and takes gymnastics. He is definitely, not a little "Professor", as many Asp. kids are, but his grammer is good, as well as his sentence structure. He wasn't diagnosed until a year ago at 4 1/2. We sent him 1/2 days three days a week to a pre-K with other HF and Asp. kids We have since January had two hours of speech with one st. and 1 hr. with another, each week. One"s specialty is speech and the other is receptive and expressive language. My daughter refuses to consider any bio-medical interventions, believes that he needs time to be himself, and veg. out. We also have OT two hours per week. Neurofeedback 2 hours a week. That is it. This coming fall he will attend 1/2 day k with the same kids as last year, and 1/2 day in a diagnostic K in public school. We will continue with neurofeedback and ST. Holly, I forgot to mention that his meltdowns, are rare, and they are quiet. When he was younger, he would hide under a table, but now goes to his own space. He is not a screamer, and has never hit, bitten, etc. He is a very gentle child. The bottom line is that no two kids are alike.I don't know where you are located, but we are in Toronto. My Gs was ineligable for funding because he was diagnosed as VHF This is why it took us from Sept. when he was diagnosed until Jan. to set his program in motion, as we were basically out of the loop, and needed to do all of the research on our own. I found websites like this one, and people willing to share their insights my greatest help. If you want any further info on the type of therapies we are using, my e-mail is Regional Center? I am not familar with that. Do you have any words of advice to help prepare Gregory for kindergarten Sept '06? And what should I be looking for in a school? Do you mind me asking all this? We are currently in the "process" of going thru the school district(IU). We had our first appt and now on the waiting list for 2 others. From what I hear that is normal for the IU. Greg is currently having private ST twice a week. Which has helped alot! I hear with the IU the squeaky wheel gets the oil, so I have been persistant. Not sure about IEP???? Wow the regional center sounds great! Here in PA I don't believe we have such. But I keep investigating and asking. Right now my biggest bump in the road is Greg's Dad. He believes that Greg is fine. He doesn't want him "labeled". Says I am making a cripple of him. I wish I could get him somewhere to see how different Greg is from the other 4.5 yr olds. I think it would be an eye opening experience. Any wisdom on that subject? IU is not a term I'm familiar with. It may be unique to your school district. IEP, however is standard for the whole country, and stands for Individual Education Plan. Not only is it a plan with very specific goals, but it serves as a contract that holds a school liable if they are not keeping up their end of the bargain. If they fail to implement anything in the IEP, or your child is consistently not meeting their goals, then it gives you power to demand more services, and if the school district can't provide those services then they must pay for a non public vendor or school to provide the services. This is neither an easy or quick process, but it is there to protect the child's rights, and if you are willing to fight, and be a pain in the a$$, you can usually get the school to provide what your child needs. Gregory needs an IEP now. The IEP team will determine what services he needs, and make sure those services are available to him. Contact the Special Education department of your school district and tell them you want to have your child evaluated and schedule an IEP. I'm sorry Gregory's father is not being supportive. That does make the road a bit more difficult. However, you do not need his permission to have your child evaluated, hold an IEP or implement services. It just means you have to shoulder all of the responsilbility. I would strongly encourage you to have his father come to a birthday party, or spend some time at preschool with him so he can see what the other children are like. At any rate, you are doing all the right things by getting the ball rolling. You are not labelling or crippling him. You are providing him with every opportunity available so that he will be able to achieve at the highest level that he is capable. Life is a journey. As a parent, I feel it is my job to make that journey as smooth and painless for my child as possible, while giving him every opportunity to spread his wings and fly on his own. OK, the County IU is where ds is eval and then we do the IEP. Here the wait to get into the IU is months. Just a return phone call takes sometimes 2 weeks! To get the ball rolling faster I am having some of his testing/evals done at the Children's Hospital. The IU will except the evals. But even at the CHOP there is a wait. I was hoping to get Gregory enrolled into some type of program by Sept by it's not looking good! So we will continue the private ST and he will go back to his preschool in Sept. At least he will continue to be involved in social setting and the teachers are great there. THe preschool is hoping the IEP will involve them. They love Gregory too! Thank you for the insight on IEP. This is all so new to me. If DH up and leaves before the IEP. Then the game plan changes again! But I hope not for DS sake. I would like to see an IEP in place etc before heading off to work FT. I thought about having DH go with me to look at Day Cares in the areas but even last year when I was looking he wouldn't come. He's not much of a hands on Dad. We had Gregory later in life (I was 42 when Greg was born) so our friends all have children going off to college etc... DH has 2 teen girls from prev but there too, not much contact. An occasionally call or visit. I feel as you do. I want to do all that I can for my dear sweet little boy. I want him to have happy wonderful life. Not a crippled little soul but a man that is smart and good. I think I love Gregory more then ever. Since the dx I feel like I undestand him more. I sure do kiss and hug him alot more! Now I am missing him
[I am in PA as well Holly. There is also a county intermediate unit here as well that my grandson attends classes at. Anne awagner615@aol.com QUOTE=Gregsmom] We are in PA. Seems so far we can get some help from the county intermediate unit. We already had our first appt but waiting to get into OT and pych. Everything is wait. I am looking into other things also. I spend alot time researching.
hang in there. It does get better. My next piece of advice is to bombard
him with whatever speech and social skills therapy are available to you.
There is a small window of time when the brain can be "trained" to
efficiently process language that rapidly starts closing by the age of ten.
Don't worry that you may be overdoing it. Just do it. I guarantee you'll
see wonderful results. Make sure you get the school involved and that
you are utilizing the services they offer to the max. I sent my DS to
private speech therapy as well as the school ST until he was nine, then
won a court case for educational therapy that included speech for the
past school year. It doesn't make the learning disability disappear, but it
does compartmentalize it and help make it more managable for DS and
his teachers.
private speech and on the waiting list for the IU.
eye contact getting better, good imaginative play, social skills getting
better, not so great fine motor skills, late with potty training, freaks out
for nail cutting or combing hair, very loving, loves numbers and letters,
very few items that he will eat, gags up anything out of the ordinary
etc......
school? Sports?
Almost everything you listed rings a big, loud bell. We didn't have
imaginative play until about 8, and he still doesn't see much of a point to
it. His fine motor skills have always been very strong, and I never had a
problem with nail cutting or hair combing. Everything else is dead on.
He was fully potty trained at 4 1/2, still can't ride a bike at almost 11, and
I couldn't believe it when I read the part about gagging! He has actually
vomitted onto his plate when I have tried to coerce him into trying
something new. We have been working with a behaviorist for the past six
month on getting him to try new foods, and have had a surprising
amount of success. I can get him to eat brocolli and spinach if I offer up
MacDonalds or Dominos as a payoff, and he hasn't thrown up once. The
problem is that he tries to swallow foods he doesn't like without chewing,
and that's when he gags. The deal is that he has to chew everything
thoroughly, then swallow, otherwise no prize at the end of the tunnel.
Like your DS, he is very sweet and loving, and he's a whiz with numbers.
I'd look into a social skills group for him, though you may need to wait
until he starts kindergarten. Also, try Cub Scouts when he is six. As far
as sports go, my son was always mainstreamed for them until last year
when he played challenger baseball instead of regular baseball, and
Special Olympics golf. He complains sometimes that he doesn't want to
play with the "Freaks", (charming, huh?), but I won't put him under that
kind of pressure because he also suffers from anxiety disorders, and
sports are just so high pressure.
When he was younger, he would hide under a table, but now goes to his
own space.
are located, but we are in Toronto. My Gs was ineligable for funding
because he was diagnosed as VHF This is why it took us from Sept. when
he was diagnosed until Jan. to set his program in motion, as we were
basically out of the loop, and needed to do all of the research on our
own. I found websites like this one, and people willing to share their
insights my greatest help.
e-mail is
Interesting. My son's meltdowns were always very quiet, too. He would
curl up on the floor and refuse to move. He would do this anywhere.
Restaurants, markets, Target....My DS has never hand flapped, run around or toe walked. He has a
slightly awkward gait when he runs, but that's it. He has a hard time
respecting body space, and will literally get in my face two seconds after I
tell him to back off. He does this mostly for laughs, though,
inappropriate as it is. He has a wonderful sense of humor, and a
pendantic tempo to his speech. He's one of those little professors, who
laces his speech with lots of "such as" and "so you see's". He still uses
echolalia as a form of stimming. I sometimes hear him scripting whole
Simpson's episodes to himself in the bathroom while he gets ready for
bed. He always has a running dialogue going while he's in the shower.
He recently tested well within age appropriate limits for both adaptive and
life skills, and this along with his high IQ gives us every indication that he
should be able to lead a normal, productive life which should include
college, marriage, and children. He will need extra support throughout
school (and marriage 
) as he is extremely disorganized and
forgetful, but all in all, we have a lot to be thankful for. We love our
quirky boy!
wide range of services for people with developmental delays. I'm thankful
everyday that Connor qualifies for their services, thanks to a wonderful
psychologist who made a point of emphasizing his early speech delays so
he would not be dx'd Asperger's rather than HFA. Regional Center
generally does not provide services for an Asperger's dx. Through them,
we have the services of a behaviorist to help us with his anxiety and food
issues and social skills therapy. He also qualifies for respite services, but
I have never needed them. I wanted to send him to a one week autism
camp this summer at UCLA, and they agreed to pay for it and bill it as
respite for me. They also provide ST and OT for children under 3 years.
After that the schools take over.
Does Gregory have an IEP? Has he been evaluated by your school district?
There could be a wealth of preschool programs that you could be tapping
into free of charge. At the very least, he should be getting ST through the
school district right now.
And no, I don't mind you asking questions 
Keep up the good work, Holly. You're doing all the right things for
Gregory. If your DH is a lost cause, so be it. Like I said before, you don't
need his permission to get your DS the help he needs. And I feel the
same way about Connor as you do Gregory. My heart just about explodes
with love for him (DD too ) He's just an extraordinary person, and he
takes on each challenge with such a wonderful attitude. Sometimes he
tells me he wishes there was a pill he could take to make some of his
more difficult quirks go away, but I wouldn't change a thing about him.
He's beautiful inside and out, and will someday drive some lucky girl
absolutely bonkers!
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