That is so fantastic that he qualifies for all this therapy! I'm very happy for you! We see so much progress thanks to all the therapy our son is receiving. The eye contact/connection with others will surely continue to improve, and will help him out a lot. Our son is so much more social than he was at the start of the summer, when Early Access ended. I bet you'll be seeing the same with your boy.
She was quite candid in saying that he really was toeing the line between low to moderate. I have a feeling that they always err on the high side, because the funding is minimal with a low diagnosis.
Good news, El! It's always great to have things like that out of the way and have a course of action going forward. You're right regarding the diagnosis. Our son was toeing the line between low spectrum and PDD-NOS. Our pedatrician diagnosed low to qualify for EIP.
I also wanted to talk about how well our son did over Thanksgiving.
This year we went down to Philly to spend it with my wifes' family. There were upwards of 40 people packed in my wife's cousins' house, including 16 or so kids ranging in age from 1 to 16 (most of which my son hadn't met before) with most falling in the 4-7 year old range. Despite the copious amounts of noise and craziness, Émile didn't have any bad reactions or stimming behaviors. All the kids spent most of the day in the basement playing and going nuts. Émile fell right in and had a blast.
Are there triggers for him, gewy? Anything in particular which sets him off?
gewy, I too have anxiety around dealing with Owen when he gets too big to manhandle. When he decides to tantrum, it is all I can do to control him physicially.. which we only do if he is in danger to himself. Otherwise we try to let him sort it out himself, and if that means thrashing around on the floor so be it.
All I can say is that as we are starting to figure out the triggers like FSeven said, tantrums are becoming less and less frequent, and certainly less intense. I was just saying to the psychologist this morning, that we haven't really seen a tantrum like Owen is capable of in quite a few weeks. I really just think we are getting better at predicting what might send him off.
Stay with it.. you are doing great, it's no easy task for sure. Remember you are not alone in this.
Keep working at it, and try not to let the worry take over. Easy to say, I know, because I'm prone to do the very same thing. But the therapy will really help your son. None of us know how our children, typically developing or not, will turn out. So I have to remind myself to let all that worry go.
My son also will just run, though he's getting better at complying. It is frustrating and nerve-wracking. Thinking of you and your wife. Be strong, you will get through this.
We have tried substituting more appropriate things like vibrating toothbrushes or chew tubes, without any major success. They just wind up on the floor after a minute.
Try getting a clip/ribbon combo or attach it to a lanyard.
A good article I just read:
http://cognoscenti.wbur.org/2013/11/29/early-diagnosis-susan-senator
I get a lot out of whatever Susan Senator writes.
Owen finally had his appointment with the Developmental Pediatrician. She is absolutely wonderful.
She did do an assessment, and confirmed the previous diagnosis. She kept commenting on what a loving, affectionate and charming boy Owen is and pointed it out his strengths which are eye contact, the way in which he seems to get excited and happy about things, his interactivity and the bond which he has with us. She did say that clearly his weaknesses are his language, and the fact that pretty much everything he does is on his terms.
She reinforced that she thought Owen was very lucky to have us as parents, and that even though we are very early into this journey we are managing him like old pros, and it's clear that we love him a lot.
She kept saying at how wonderful the treatment team is here, and that we are fortunate to live where we do. She said not to be concerned about his limited diet, that based on what he is eating she wouldn't recommend supplementation of any sort. She believes he will do quite well with therapy.
The private ABA therapist has started actual therapy about 1.5 hours a day. Owen loves him, and is making some great strides particularly with language and eye contact. He's started to call me buddy, rather than dad lol.
Our only issue with the therapist is that he is very unreliable with time, and punctuality. Constantly late and changing appointments. He is a stay at home dad with a busy household so we are trying to cut him some slack, as he really is doing wonderful things with Owen. Once Owen gets accepted into the ABA program at the local treatment center (hopefully early in the new year), we won't need his services.
Anyway, I hope all of you parents have a great holiday season and enjoy the little buggers no matter how tough life may seem.
Great news, El!
pointed it out his strengths which are eye contact, the way in which he seems to get excited and happy about things, his interactivity and the bond which he has with us. She did say that clearly his weaknesses are his language, and the fact that pretty much everything he does is on his terms.
Sounds almost exactly like our son.
She reinforced that she thought Owen was very lucky to have us as parents, and that even though we are very early into this journey we are managing him like old pros, and it's clear that we love him a lot.
He is very lucky. I don't know about you but going through this and having a son who is the way he is has taught me more about myself as a person than anything else in my life. I think my son has helped me more than I've helped him.
She kept saying at how wonderful the treatment team is here, and that we are fortunate to live where we do. She said not to be concerned about his limited diet, that based on what he is eating she wouldn't recommend supplementation of any sort. She believes he will do quite well with therapy.
Our son is a super picky eater, too, to the point where we worried about his diet. We give him the V-8 fusion juices that have a daily supply of vegetables + fruit in one cup. Anything to supplement his bad eating habits. Luckily I think we've finally managed a bit of a breakthrough. He absolutely would not eat any meat except for chicken nuggets. This weekend my wife made some apple-bourbon chicken which he scoffed up. We think it was the sweet sauce so we're going to try providing sweet dipping sauce on the side for his meats.
The private ABA therapist has started actual therapy about 1.5 hours a day. Owen loves him, and is making some great strides particularly with language and eye contact. He's started to call me buddy, rather than dad lol.
Our only issue with the therapist is that he is very unreliable with time, and punctuality. Constantly late and changing appointments. He is a stay at home dad with a busy household so we are trying to cut him some slack, as he really is doing wonderful things with Owen. Once Owen gets accepted into the ABA program at the local treatment center (hopefully early in the new year), we won't need his services.
That's a tough situation. I suppose it would be a much easier decision if your son didn't bond with him so easily. On the flip side, this is your money and your son's life and time is of the essence (greater gains are made at younger ages due to the malleability of the brain) so missed appointments and lateness, to me, are unacceptable. I'm surprised with that sort of attendance history he manages to keep his job in a private practice.
Anyway, I hope all of you parents have a great holiday season and enjoy the little buggers no matter how tough life may seem.
Have a great holiday, El.
Have decided I need to pursue a HFA evaluation, so tagging here for future adventures. :/
We're currently trying to get additional accommodations for our son, who has definitely made progress at home, but not at school in the areas addressed by the IEP. I talked to the head of the local therapy center and found out that our school system must be pressured to serve special needs children in ways that really help them. Not a new story by any means. But I have a couple of contacts through the woman I talked to, which should be helpful in striking a tone that gets results when I communicate with the school district.
Another interesting and sad piece of information: the gap in test performance between typically developing students and those with IEPs is the largest in Iowa. Worst in the nation, folks. I grew up in the deep South and I'm used to those states being the worst in the nation in all kinds of ways. I didn't expect this in a state that prides itself on education.
Another interesting and sad piece of information: the gap in test performance between typically developing students and those with IEPs is the largest in Iowa. Worst in the nation, folks.
Honestly, I wouldn't give that a second thought because as-presented it's a meaningless statistic. You can't compare "typical students" (for which a baseline can be established) and children with an IEP which do not comprise a homogeneous group. An IEP can be established for a child with a mild ADHD type disorder fully controlled with drugs, a profoundly disabled one incapable of meaningful conversation, or anything in between.
Simply going by the statistics my family should be in bad shape here in Texas, especially living in a small town where the schools don't rate as highly as some of the nearby larger cities. The reality though is that my kids are getting more support and attention at the schools here than they ever did previously.
Basically, try to cheer up and don't worry about those large scale statistics. Tackle things at the level of your individual school (which it sounds like you already are), and keep in mind that it's often possible to find one school within a district that has a better record with handling kids on an IEP. We had our kids moved around within the district in Oregon for just this reason. The district often doesn't want to deal with the paperwork, but a persistent parent can usually win that fight.
Elycion, thanks for the response. That thought crossed my mind as well. At the same time, Iowa's gap is 50% higher than the national average. That indicates something, but what exactly is going to be tough to determine.
What I'm a bit frustrated by at this point is the school district's refusal to allow my son's private speech therapist in to work with him at school. It's not just a matter of convenience for me, but would allow her to work on peer social interactions with him more extensively. The school district has a policy of refusal, in contrast with neighboring school districts, which do let them in. He's really not getting what he needs at preschool, namely regular practice with social interaction. It's not that the teacher and paras aren't willing, it's more that each has 5 students to deal with, and since my son is not a troublemaker, they're happy to let him do what he wants, that is, playing on his own. They don't push him to join in.
My goal is at a minimum to get a short-term paraeducator to work with him one-on-one. He really needs to be pushed to work and play with kids his age. On the other hand he's quite bright, doesn't stim, and doesn't throw terrible tantrums, so I think it's easier for the current staff to let him do what he wants while they focus on the kids whose behaviors are more challenging. But I think it's really important to cement the social skills now, because it will pay really high dividends in the future.
My current situation. My son is 13 years old and in the 6th grade. He made it to middle school and has an aide that follows him all day. He eats lunch and goes to gym with the typical kids. In fact, most of the time he is around typical children. He gets pulled for speech and stuff but only a few times a week.
Our timeline so far:
Diagnosed at around age 4.
Tried the preschool program in our town. Realized he wasn't learning anything and fought to get him somewhere better. Remember, you are the parent and you might find yourself fighting a lot with the schools, but you are the one that must make a stand for your child.
Pulled him out of school and hired LOVAAS to come to our home. At the same time we secured him a placement at the Douglass Developmental Disabilities Center in Rutgers NJ. We sued the local school system and settled out of court to keep him there. Our out of pocket expense was about $1200 a month.
After we felt he made some progress, we decided that we really couldn't afford to keep him in the DDDC, and transitioned him back into the Public School System. Big mistake. He started becoming lost in the system and we noticed some of his progress starting to reverse.
This time, the school took us seriously and helped us look for an appropriate out of district placement.
We found a wonderful program in a nearby town that was created by a professor we met a few years before. The program is in their public school, but it is so well designed (compared to my town) and it offered him a chance to interact with typical peers on a daily basis.
He has been in that program ever since.
In his spare time, he plays simulation games on Steam (including Euro Truck Simulator 2) and building LEGO's (like his father).
I've heard from one of the contacts and will be gearing up for my response. First to go through the IEP and see how to justify what we want to do.
PRG013, this is helpful information. We have good insurance, but are already paying out of pocket for additional services. More wouldn't surprise me.
I see that I missed a few posts around Christmastime. El Producto, it sounds like things are proceeding well. And gewy, all I can say to myself is to keep my head up and keep moving ahead. I will be making contact with parents who have a bit more experience with all this, and I hope it will be helpful in getting a good handle on the situation overall. But so much seems like a black box at times and it's hard to know where to start.
I am really sorry to hear this. I would have a difficult time with seeing my son hurt himself as well. This is a frustrating and mysterious condition, and I will keep you and your family in my thoughts.
Gewy you and your wife are in my thoughts. I feel so fortunate that my Owen is making great strides, and I can't imagine how scared you must feel. Please pm me if you need to chat, blow off steam whatever.
Honestly, I wouldn't give that a second thought because as-presented it's a meaningless statistic.
Especially since is there mention anywhere of there being a large enough sample to be statistically relevant? And may be because Iowa values education it is easier for the IEP kids to get unintentionally marginalized.
I am not saying to do nothing about it. I am just saying avoid incorporating knee-jerking in your pursuit/stance.
Looks like my youngest boy (Tristan) will likely get some form of spectrum diagnosis in the coming months. He will hit two this month, and within the last few weeks we've been trying to get the ball rolling to deal with some developmental delays we were seeing. We don't really know what's going on inside his head a lot, but at least he's starting to express himself more. By this age, our oldest was speaking in sentences, Tristan is still working on multi-syllabic words. So our county's early intervention staff came out to do an initial assessment, and scored his cognition, expressive communication, and I think fine motor skills at 7mo old, so he very clearly qualifies for services.
We started noticing that we couldn't really communicate with him, and when he would get frustrated he would throw epic tantrums that could last over an hour until he would just tire himself to the point of passing out asleep. He doesn't take a lot of interest in toys, but he can focus like there's no tomorrow on animated films.
The weird thing is, in looking at a lot of his symptoms, I came to the understanding that I very likely have asperger's (took the RAADS-r and received a 199 score). A good handful of his issues I see with myself, especially his aversion to certain textures and foods. I need to really get on looking for a good therapist, but I just can't seem to find the time for it with my work. I'll get to it eventually.
My wife is pretty upset, and is mad at me because she feels I'm not taking things seriously. While I am upset, I'm not particularly emotional to begin with, and the only options I see presented to us are the things we're doing. I can't rewire my son's brain, I can't make him or myself normal. I see no reason to tread down the roads of "what if", because we don't know what his level of functioning will be. I feel powerless, and I want him to grow up to be on his own and happy, but I just don't have the ability to guarantee that with either of my boys.
I'm hopeful though. The therapist he's starting with really clicked with him, which is really odd as neither of us take to new people very well. The plan is to get him a little more focused through sensory therapy, then go from there.
My testing panel is Saturday. My mom Fedexed me all my old report cards and standardized tests from preschool and elementary... that's supposed to come Thursday so I can prep it for my evaluator.
Oscillating between fear of getting a "you seem fine, your tests look normal" result and being totally out of viable answers, and frustration that I've had hundreds of pages of psych evals done over the course of my life and this never arose, for any number of reasons. Other counselors not being trained, ASDs presenting much differently in females vs. males, and the part where HFA wasn't even a thing in the early 80s.
Sigh.
On a better note, I replaced half of the fluorescent tubes in my office with full-spectrum bulbs, and it has made a world of difference.
Looks like my youngest boy (Tristan) will likely get some form of spectrum diagnosis in the coming months. He will hit two this month, and within the last few weeks we've been trying to get the ball rolling to deal with some developmental delays we were seeing. We don't really know what's going on inside his head a lot, but at least he's starting to express himself more. By this age, our oldest was speaking in sentences, Tristan is still working on multi-syllabic words. So our county's early intervention staff came out to do an initial assessment, and scored his cognition, expressive communication, and I think fine motor skills at 7mo old, so he very clearly qualifies for services.
We started noticing that we couldn't really communicate with him, and when he would get frustrated he would throw epic tantrums that could last over an hour until he would just tire himself to the point of passing out asleep. He doesn't take a lot of interest in toys, but he can focus like there's no tomorrow on animated films.
The weird thing is, in looking at a lot of his symptoms, I came to the understanding that I very likely have asperger's (took the RAADS-r and received a 199 score). A good handful of his issues I see with myself, especially his aversion to certain textures and foods. I need to really get on looking for a good therapist, but I just can't seem to find the time for it with my work. I'll get to it eventually.
My wife is pretty upset, and is mad at me because she feels I'm not taking things seriously. While I am upset, I'm not particularly emotional to begin with, and the only options I see presented to us are the things we're doing. I can't rewire my son's brain, I can't make him or myself normal. I see no reason to tread down the roads of "what if", because we don't know what his level of functioning will be. I feel powerless, and I want him to grow up to be on his own and happy, but I just don't have the ability to guarantee that with either of my boys.
I'm hopeful though. The therapist he's starting with really clicked with him, which is really odd as neither of us take to new people very well. The plan is to get him a little more focused through sensory therapy, then go from there.
I wish you luck and strength through this. I was also surprised at how well my son took to his therapists. That connection has made their work with him so much easier. He continues to make progress with his therapies, but what we must always accept. I am learning, is that the progress might not be what we would hope, and that while it will probably be very helpful, we still can't know where he will end up. He really has made a lot of progress, but has social, sensory, and fine motor delays.
As for your wife, what comes to my mind is how my husband and I reacted as we saw how our son did not develop according to milestones. We are both worriers, but I am much more open about it. My husband has a more difficult time expressing himself emotionally. It made me a little crazy and very frustrated with him. Do you think that might be a cause of your wife's frustration? Looking back, I think we both grieved over the diagnosis and prospects (and still kind of do) but expressed it in different ways. It also took us different periods of time to accept that our son would likely always be different from other kids, and that we would probably need to adjust our expectations for him. Of course there's a very long time till he's an adult, and much can change. But accepting the unpredictability of the outcome has been hard.
I teach college students and I've had a few who either are definitely or very likely on the spectrum. In some ways it's been very good for me to consider my son as I talk to them. They may or may not make eye contact, and can be very literal minded (as I write this my son is twirling around in the next room...). So this most recent student asked me whether something I mentioned in a joking and off-handed way would be on the midterm. My first response, "I wouldn't worry about it." My second, "It's not something I would worry about." My third, "No, it won't." And then he was satisfied. A new advisee of mine was diagnosed with Asperger's recently, but for some reason did not want to have any disability accommodations provided. And THAT is why he was on academic probation when he became my advisee. He also never answers any of my emails that give suggestions and ask directly how the term is proceeding. Of course a thought running through my mind when I talk to them is, "will this be him in 15-20 years?" Some I think might do pretty well for themselves, but others, well, may live with their parents all of their lives. Because my husband and I are in our mid-40's, that is a difficult thought.
clover, best of luck with the test panel, and I hope the results are helpful. BTW, I'm not on the spectrum, but fluorescent lights can give me migraines, especially when they flicker.
Just saw this link about one mother's reaction to the ASD diagnoses for her two youngest sons.
ETA: my son is a very sweet and smart little fellow with a wonderful sense of humor. 3.5 is not an easy age, but he always brightens my day.
We are both worriers, but I am much more open about it. My husband has a more difficult time expressing himself emotionally.
That's similar to how we are. For me, I'm much quicker to accept that things are the way they are. When you mention that those students you believe are on the spectrum are very literal minded, that's pretty much how I am. I look at what is, and that's all I focus on. He has delays now, and my best course of action is to seek therapeutic help for him while it's still early, in the hopes that it will increase his chances and opportunities later on. When new challenges arise, or milestones are reached, I will reassess my standing on it, but I won't worry now for something I can't know for certain is in the future.
I look at him and I get this visual in my head of thousands of possible futures like the tips of a fan, with extremely low functioning/living at home with constant care at one end of the fan, and high functioning with a fairly normal life at the other. What we do has some influence on what point he will reach, but we don't really have a lot of control to push for one outcome or another. Right now we're at the tip of the fan, where options are very limited just due to his age, and his delays. As time goes on, hopefully those options and therapies will expand and open up.
And there are signs that we're seeing that make us both feel that he's starting to express himself. On Monday, I was taking him to his 2yr checkup, and as I walked up to the elevator I mistakenly hit down instead of up. So of course, given my luck, the first elevator to open is going down, and someone's heading down in it. And there's this awkward moment where the door is open, and no one is getting in... and Tristan waves to the girl and says "Hiiii". We all get a little giggle, and as the doors close he waves again and says "Byyyyeeeee". It was sweet, and completely took my by surprise.
I need to really get on looking for a good therapist, but I just can't seem to find the time for it with my work. I'll get to it eventually.
Please, please, please do whatever you have to do to get the ball rolling on this ASAP. Take a vacation day from work if you have to. The best chance for gains and a "normal" adult life is based on progress made when the child is young and when the brain is most malleable. Also, be present in the therapy sessions and evaluate the therapist on their technique, not just on whether or not he/she clicks with Tristan. Find one that is getting results. And find one that makes every session and is punctual. There is a very small window here and Tristan needs every single session that is coming to him. Your son is more important than your work.
My wife is pretty upset, and is mad at me because she feels I'm not taking things seriously. While I am upset, I'm not particularly emotional to begin with, and the only options I see presented to us are the things we're doing.
Instead of waiting for options to be presented how about finding out what options are available? Your son needs his parents to be his strongest advocate and, to be honest, I think your wife is right. It doesn't sound like you're giving it the weight that it deserves. Your son really needs you to fight for him if he's going to succeed. I can't help but think that the time you carved out to post here would be better served reading information or researching resources.
I can't rewire my son's brain, I can't make him or myself normal. I see no reason to tread down the roads of "what if", because we don't know what his level of functioning will be. I feel powerless, and I want him to grow up to be on his own and happy, but I just don't have the ability to guarantee that with either of my boys.
Not true. Your son's brain CAN be rewired at this young age. Our Pediatric Neurologist explained it: brains have "bridges" that connect to other parts of the brain. Kids on the spectrum are born with some of those bridges not developed. However those bridges can totally be built with therapy at a young age and the best thing about it is that once those bridges are built, they can't be destroyed. They are there for life.
You and your wife hold his future in your hands. His potential is entirely based on the effort you and your wife put into getting him what he needs. You do have the ability but I think you have a mental block preventing you from realizing it.
Maryland Commission on Autism
Autism Connect for Maryland families
You seem to be going through what I went through when we first suspected something was different with our son at 6-months old. I felt fear. Fear of knowing nothing about autism. Powerless. Which was a direct result of my lack of knowledge. So I devoured material on autism. Books, websites, youtube videos. I registered for Wrong Planet and all the time I would have used to post on GWJ I spent posting on WrongPlanet and interacting with adults on the spectrum and parents of children on the spectrum. The more knowledge I gained, the less fear I felt. The more empowered I became and my wife and I ended up getting his diagnosis at 13 months which resulted in about 2 years of multiple sessions per week therapy. And now our son is indistinguishable from a neurotypical kid. He's come such a long way and we're so proud but he couldn't do it on his own. Your son needs you. Fight for him.
Also, stop looking at yourself and your son as "not normal". Normal is a relative term. You are normal for yourself and your son is normal for himself. Everyone on this planet has quirks and things which set them off. It's interesting that you have a very self-empowering Wreck It Ralph quote in your sig but do not seem to be applying it to this situation.
The hardest thing is going to be determining what is spectrum behavior and what is normal 2-year old behavior. It's important for you to figure that out because it will make all the difference in the world. It's okay to be insistent that your son eats his vegetables even though he doesn't want to. It's not okay to be insistent that your son eat his broccoli because he has textural issues and gags every time broccoli goes in his mouth. It's an important difference.
I'm sorry if I came off as a bit of a dick but your son needs you and no excuses will do.
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