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Special Needs
Rachel Sonnier
member
Intro and Questions
Rachel Sonnier
member
Hi, I have been lurking here for a few months. I have posted once before, but we finally got DS's official eval report this week, so I figured I would intro now.
My brother is an aspie, so I didn't consider myself terribly unfamiliar with ASD, but maybe I was. DH was also said to be not only a handful, but "4 hands full," and practically since we have been dating all of his family members good naturedly liked to tell me how bizarre, aggressive, hyper and exceptional he was as a child.
DS is beautiful and happy, but has been super high needs from day one (and I literally mean day one, like in the hospital), but he was our first child and both of our parents said that all of their children were that way, so it was our normal. He was a very happy child once we got his milk allergy worked out, but he still doesn't sleep through the night at 3 and a half.
He always met his milestones on time, except for a few motor skills issues and clumsiness. The only really strange thing was that his ped noticed around 8 moths or so, that he wasn't cooing or babbling, only grunting. She had EI come out to evaluate him, but they said he was fine and that he would talk when he was ready. He never did coo or babble, but they were right, he actually talked fairly early and has never stopped since. He has always had an incredible vocabulary for his age, to the point where strangers comment on it. He is very intense and has very intense interests, as did DH and my brother. I actually don't know very many children who don't have a "thing." We are in a firetrucks stage at the moment.
As he got older it became apparent that he had what we assumed were some mild sensory issues, but having some myself, I didn't feel like it was a huge issue and I handled it the way that I would want it to be handled if it were me, and I just tried my best not to let him get overstimulated. Not always possible, but that's life. Our problems started when we noticed that he had problems playing with other children, but he has stayed at home with me since birth and has no other siblings, so we figured thatn a little daycare a few times a week to help him interact. We are all socially awkward to some degree or another in our family, so I figured it would be the same for him. It became very apparent when he was put into a group with many other children that he was different, and his first little christmas pageant was especially embarrassing. His teachers were really awesome about working with him, and would even go sit with him in music class, because sometimes it is a bit too much for him. Things seemed to be well.
He's not a big fan of change and his teachers this year were not having the same success with him that his teachers last year had. They let me know right away that things were not going well, and by the 5th week, it was very clear to all of us that he wasn't doing well there at all. They suggested that we go to see our ped about the situation. Long story short, she suspects ASD, but sent us to an OT to evaluate for sensory and fine motor issues. The evaluation report reveals that there are marked fine motor delays and definite sensory issues. It says that his PEDI normative standard score is 2 standard deviations below normal. While I'm not a statistician and pretty new to all of this, I know what a bell curve looks like and 2 standard deviations below normal doesn't sound very good.
So where we are right now is that we are very ready for him to get started with therapy, but we aren't sure if we should look into the ASD factor, being that a dx might not really be beneficial at this point if he is getting services to address his main issues. My brother is very resentful of his dx, so that worries me. On one hand, I want to know and be able to help in whatever ways we can, but on the other hand, aren't the sensory/fine motor issues alone enough to allow for an IEP/504 plan once he starts school? I don't have any doubts about the school we are sending him to being willing to work with him, as I taught there, and know that they are very accommodating and caring.
I guess I just don't know what to think at this point. On one hand, EVERYBODY I know family/friends have/had these same issues. We can't all be on the spectrum, right? And if we are, for the most part, we are all successful and happy. Most of us struggled socially in school, but did exceptionally well academically. Most of us were also in Gifted, which is a great place to find other eccentric kids, who became our friends. My brother and DH are both successful engineers, with families, and I would say that they struggled with these issues to a great extent as children, so I have a hard time figuring out how concerned to be about this. Am I in denial, or is this normal? I hope that this didn't come off as being offensive in any way. I know that ASD is very serious issue, I just don't quite know how to feel about the possibility of this yet. Any advice or thoughts would be appreciated. TIA
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Re: Intro and Questions
In your post you say that the sensory/fine motor issues alone would qualify for an IEP. They would for some period. My son has sensory issues and after a year of OT his fine motor skills are average. He is receiving no OT from his school on his IEP this year because he has no delay to qualify though he still presents with sensory issues that affect his day to day life. It seems like with the issues you have going on with your child you don't want him out of therapy in a year's time.
I think you're right in the fact that there's a chance that his life could be just fine like yours/your brother's/DH's life. Or those issues that you were able to overcome he might not be able to and it will have a profound, negative impact on his life because he could have a more severe case of ASD than the members in your family did. The thing with ASD is there is a spectrum and the outcomes vary greatly. If his quality of life is impacted in the future, would you feel guilt that you didn't seek all that you could to help him become his best self?
I think having a diagnosis will help you accept what is going on/gain a greater understanding. Also, the therapies to treat ASD aren't necessarily the same as what would be used on a kid with sensory processing disorder, kwim? The school department's options for therapy are also going to be fairly limited. With a dx of ASD, your insurance carrier will cover more which will give you more, longer sessions and/or more appropriate therapy options than your school department may be able to offer.
Thank you all so much for the info and advice. A lot of my questions were answered.
Auntie, my brother does have a clinical dx, and his thing is space. I can tell you anything you ever wanted to know about the US or Russian space programs as a result of having lived with him growing up. ANYTHING.
He has seen therapists and had been on medication for as long as I can remember. He had such a sad childhood, and I wouldn't wish that on anyone, especially DS. First, they dx him with ADHD early on in school. When he was in middle school they said that he also had bipolar disorder. Nothing was helping him. He was always in therapy, picked on at school, his teachers didn't want to work with him because of his behavior issues, despite the fact that he is practically a genius. Then he started seeing a new dr in high school (some time after 1999-2000, because I remember being in college at the time). The new dr said Asperger's, and that he disagreed with the dx of ADHD and bipolar of the previous dr. By that time, my brother was throughly done with all of it, very angry, and said that he was tired of being labeled as whatever the "disorder of the year" may be. I don't know if he is aware that his dx was taken out of the DSM when they revised it, but in his eyes that would only strengthen his argument about labels, I am sure. He is a huge proponent of "leave me alone and let me develop my own coping strategies."
None of the medications or therapy were ever able to illicit a great change, or outcome in his behavior or social interaction, and the day my parents dropped him off at college he stopped taking his meds, and hasn't gone back since. He graduated in petroleum engineering in 4 years and was one of only 3 to find full time employment in his entire graduating class (the year of the oil spill, so things were extremely slow in his field). He does exceptionally well, and we are all very proud of him. Socially he still grasps at straws, but he gets by, and we are patient with him.
So please understand that this is where I am coming from. It is not that I don't want to help my child, because his happiness and wellbeing mean the world to me. However, from personal experience, I feel like there is a fine line between helping and harming, and I have never seen anyone with this helped by a myriad of diagnosis, or therapy. I am hoping that it has come a long way since my brother's childhood. I do not want him to be bitter, or feel as though he would have been better off if we hadn't subjected him to a dx. However, as the pp mentioned, I would hate to have not done enough and have him be worse off because of it. That is why I am here seeking info and input. I feel like its a tough call, because I want to do what is right for him.
DH's little sister also has an ADHD + bipolar dx, and she DOES have some pretty serious life skills problems. Despite being extremely bright, she has yet to be able to finish college and often has trouble with employment and roommates. She has a lot of the same issues as the rest of us, but it appears to a greater extent, especially the social anxiety. However, she is really beautiful and is forgiven much of her immature and strange social behavior because of this (i.e. insisting on wearing a princess crown to work and twirling and bouncing around...seriously. She also refuses to interview for a job unless she knows the person interviewing her, so this is very limiting).
This does concern me greatly, because it appears that she was unable to develop the necessary coping skills to deal with life in general, and I fear the same for DS. I guess we will just have have him evaluated for ASD and hope that we are doing the right thing for him. I agree that the lagging maturity is a big deal, and that adults can expect a lot from him. He is 3, but is is in the 97th percentile for height, so he looks like he is 5-6 and has a vocabulary superior to some adults. However, we cannot potty train him and has trouble using a fork and spoon....But he can name all the planets, he appears to make maps in his head, he can do simple physical math, learns (non-physical) things effortlessly, and can predict what the weather will be like the next morning just from standing outside in the afternoon (I know that sounds super weird, but he's always right).
Thank you so much for all of your help.
I can understand your reluctance for therapy/a diagnosis when you had such a negative experience with your brother. I think why you never saw therapy be effective is because by the time they got the right diagnosis it was too late. The therapy strategies autism is not going to be the same as they would treat bipolar disorder/ADHD. With your child, you're going to have the benefit of family history as well as doctors who understand autism better now than they did years ago so your chances for successful therapy are likely far greater than they were for your sibling.
The reality is that while your brother was able to develop coping mechanisms in his own way, the majority of people with diagnoses like that aren't going to have the same happy ending without some intensive, appropriate therapy.
As a parent with a child with a diagnosed disorder (sensory processing disorder) I can tell you finding the right therapy was life-changing. I had that child who literally couldn't sit still for a minute to do something. I know this sounds typical for a 2ish year old boy but witnessing him for 5 minutes you could tell something wasn't quite right and he was very different from his peers. Everyday noises or simple typical play activities like playing in dirt ilicited extreme reactions of literally shaking in fear/screaming. After spending a year in therapy he still has his energy, but he can regulate in such a way where he functions appropriately in everyday life. He can sit in a classroom with his peers and interact with them/focus appropriately. He plays with dirt and doesn't scream when he hears a truck. He wouldn't have gotten those coping mechanisms without therapy (or those coping mechanisms would have likely manifested in inappropriate behaviors).