Hello, my son Logan is 7 years old. He has already been diagnosed with Hirschsprung Disease at 5 days old, later to be DD. He started out as a normal baby (as normal as it could be with the challenges he had with Hirschsprungs) We noticed that something was wrong at the age or 11 months and had him screened with Rainbows United. Logan was delayed in everything and we had people come to our house three times a week for services.
At the age of three he was actually going to Rainbows and was evaluated by a Neurologist and she only came up with him having DD.
At age 5 he was evaluated again and they ended up putting a MR label on him.
The first week of school the special education teacher spoke with me and asked me a bunch of questions about Logan's behaver. She thought that he seemed more Autistic then Mentally Retarded. I have always felt that Logan was smarter then what they have all let on about him, he has such a curiosity in his eye.
I have spoken with his ped. about this and he clearly stated that there was no way that Logan could be Autistic because when you call Logan's name he will look your way. But I insisted we go see another Neurologist and sadly we have been on a waiting list for now 2 years to see one in our town. AND its the same Neurologist that diagnosed him the first time.
I see a lot of patterns in Logan that really make me continue to do my own research.
Logan has to have things in patterns, for example: He loves this risk board that we have and will spend hours on the floor matching the colored army men to the continents and if you put one on a continent that does not match when he is not looking he will go right back to it and put it back to where it matches.
When Logan plays with Lego's he always makes the same shape over and over again and it all has to be the same color.
When Logan eats at the table the plate has to be a certain way, same with his drink on a certain side, if you move it around he puts it right back.
Logans speech is still a little delayed, he can copy things you say but its really hard to have a regular conversation with him. Most of the time he just ask you what color is his shirt and walk away or repeats things that are off of a movie.
The one thing that makes me the most sad is that I cant cuddle with him like I do my other children, he is quick to push away and be on his own little way. His favorite thing to do is walk around the house with his notepad and drawl circles. He doesnt get involved with my other children. Every once in awhile he will call his younger brother to come in and jump on the bed but thats about it. Other wise he is off on his own, and that makes me so sad.
When Logan gets upset he does this funny thing with his hand, he likes to push it on his chin. He did that alot when he was younger just to get that sensation he would come up to you or grab you when you were walking by and press your arm firmly against his face . But now its only when he is mad. and makes funny grunting noises along with it thats always the same every time. My husband and I thought it was kinda funny to be honest. We would call it Logan's little chant. I am not sure if that is one of the signs of Autism but thought I would throw that in there.
Logan has always been the sweetest child in the world. He has such a charming personality when he lets us in to see it. I love the days where he seems to be on the same planet with us and runs up to me and gives me a fast kiss, it makes me truely thankful that God can give me that gift.
I know that Mentally Retarded children can all be different but this speaks out to me so strong that they are wrong. I just feel that there is more in there then what they are thinking. Should I start making a Video Diary so the Doctors can see what im seeing? Am I just being silly and this is clearly just MR? I need your advise!
It Can be both MR and ASD,go with your gut you are not being silly,A Video sounds like the thing to do,"Its how I got my dx",dont give up ,Try to find an Autism expert.
God bless,and Welcome
Hi Harlynne! My 10 year-old son (High Functioning Aspergers) also has Hirschsprung Disease. He was diagnosed when he was 3 days old. It took a team of 3 surgeons 5 or 6 hours to correct the defect laparoscopically. Luckily for my son, the defect was located at the end of the intestince by his rectum, and he hasn't had any problems since the surgery.
From what you have described, it does sound like Logan has some signs of ASD. There is a PDD assessment scale at www.childbrain.com that you could take a look at. It's pretty accurate. When your son is formally evaluated, it can help clarify things.
Best wishes to you and your son.
Thank you all so much for your positive answers and all the stuff you have shown me has greatly helped a lot!I agree that it's worth checking out, and it's a crime that the waiting list is so long.
Putting pressure on his face sounds like what we call a "stim" and is basically self-soothing, sensory-seeking behavior. The fact that he won't let you cuddle him probably also is a sensory issue, but in the direction of sensory-avoidance. The following article and checklist should bring you quickly up to speed on this, but a lot of people get help from an occupational therapist. Maybe the school has one you can consult?
http://www.sensory-processing-disorder.com/sensory-processin g-disorder-checklist.html
http://www.tsbvi.edu/Outreach/seehear/archive/mannerism.html #Chart
Here is an article on how to make observations and share your concerns with a doctor so you'll get RESULTS and not a "wait and see, nervous mother" reaction (the childbrain checklist mentioned in another post above is also great for making observations):
http://www.firstsigns.org/concerns/index.htm
The Autism Society of America has a searchable database for autism services. You can search for either your local chapter and get tips on who to go to for a diagnosis, or you can search directly under "medical and diagnostic". Here's the link:
Good luck with everything!
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To the mother that also has a hirschsprung child I have a question for ya. Is your child potty trained? That was one of the first things I was reading on this forum was for ideas and was shocked to see how many were not so it made me feel like I was not alone.
Logan doesnt even care if he is wet or had a bowl movement. I take him to the potty often and he tells me he is going to go "Pee" but just stands there for a sec and then is done and wants to go back to what he was doing. So I learned alot of great ideas on that topic that I am going to try. I just am afraid to put him in regular underwear and not in pull ups because of the Hirschsprungs thing. (He is constantly staining his pullup. So any tips if you did get this done let me know.
On Logans hirschsprungs disease we actually found out by him purferating and in which made him very sick. He has Peritonitis and we almost lost him , so we are so thankful for this little guy and we thank God for all of our kids every day. Logan had a colostomy for 9 months and then was reconnected and since then we are told everything is a ok in that area.
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My son was potty trained when he was a little over 3 years old. We were warned he would probably be late with his training, but that was not really the case. We were also warned that he might be susceptable to intestinal infections which would require hospitalization. He's hasn't had any problems since his surgery. We've been very fortunate.
I suspected something was wrong with my son when he started vomitting bile when he was 2 days old. (He also did not pass the merconium until the 24 hour mark was almost up.) I kept calling the nurses on the maternity ward expressing my concerns. They told me it was because his tummy was empty, and that he wasn't eating well because he had a traumatic birth (29 hours of labor - forcep delivery). Luckily, my insurance carrier sent a nurse to our home for a follow-up visit and she immediately noticed his tummy was distended. After a brief emergency visit with his pediatrician, we were off to Childrens Hospital where we were greeted by a team of doctors and wisked off for tests. The concern was it might be a twisted small intestine. This would mean emergency surgery and our son might not survive.
We were actually relieved when we learned our son had Hirschprungs because we were told it was fixable. We were initially told that our son would have to have a colostomy until his was big enough to undergo corrective surgery. However, then the surgeon told us he wouldn't need one. I did have to put a rubber tube up his butt and inject some sort of saline solution (?) to flush him out a couple times a day. He was a 9lb 5oz baby when he was born (ouch!), so he was big enough for the surgery before he turned 3 months old.
I'm sorry I don't have any fantastic advise for you on potty training with regard to the Hirschprungs. There are lots of threads on this board with a ton of tips. I'm sure you'll find some great ideas.
My daughter will look right at anyone who calls her name.....it took us 1 1/2 years to teach her to do this! If she is doing her OCD behavior or stimming she won't!
You need to find a Doctor or Specialist that understands the Autism Spectrum! Many Autistic Children will respond to their name, that doesnt mean he is not Autistic. I don't think anyone would call out to my daughter, see her look at them, and then say she is not Autistic.....there are soooo many other ques to know and see!
GoodLuck!
Urgh! You might also want to print out the DSM-IV TR list of symptoms of autism and bring it to the pediatrician. Point out that you only need SIX of the TWELVE symptoms to be classified under the autism spectrum. Joint attention is part of ONE of the symptoms. Joint attention is when you look at something that someone is pointing at or you try to draw attention to something yourself (look at that bird in the sky!). Looking at you when his name is called doesn't mean anything. My ds doesn't always do that, but I know other kids on the spectrum who do. And, I know several NT kids who don't always look at you when their name is called either!
I'm sorry - I just HATE when I hear how misinformed a lot of the medical community is. They think ONE particular symptom is the key and if the child doesn't have it - well, they don't have autism. WRONG!
BTW, one place to get that list is at the childbrain website.
Here is a link:
http://www.childbrain.com/pddq3.shtml