Just sad about my "borderline" kid

[Valencia]

I have never posted anything in a forum before but I thought I should try today. My 4-year-old son is autistic. I have never said that before...first time...so I am balling of course as I write this. He has only been evaluated by a school psychologist so far that stated that according to the DSMIV he is autistic, but on the CARS, he is a 27.5...so not quite but almost. I have been holding onto that "not quite" for a while now just wanting that to be the case...but I know it isn't entirely true. And though I am having him looked at by a developmental ped, having an ADOS conducted, and having him reevaluated by the IU, I know in my heart that he is on the spectrum. He does have great days/weeks where I just think I'm nuts for worrying so much about him...he is sweet, patient, plays well with his friends (as long as there is only 1 or 2) and is able to adapt with only a little bit of prompting or none at all. But this week has been hard. He is hyperactive, repeating a lot, having a lot of trouble answering questions, having small outbursts, etc. Today was one of my harder days though. We were on the playground at his pre-school after school and some of the boys were there playing...some from his class and some older siblings. They were all involved in some form of imaginative play together. My son was oblivious to the scenario they had created. It was clear to me that none of them were playing with him, but as the boys ran around together, my son was convinced they were playing tag with him. At one point he had said something to one of the boys about tag and the other just responded "that isn't the game I am playing". My son wasn't sad of course, just me. He was in his own world. In fact he didn't want to leave. He told me in one way or another through his broken speech that he just wanted to stay there because that is where everyone was at. I am just afraid. At this age, he is able to blend pretty easily, but I am so scared about the future. I just don't know how to even start dealing with what I am feeling let alone accepting it. This is just my first attempt at trying to get myself a little help...because some days, like right now, I really feel like I am losing it.

[jnet24]

I didn't want to read and not post. This is a wonderful group of loving and supporting moms who are very knowledgeable about SN. The biggest thing I have learned here is that getting a diagnosis doesn't change the child. They are still the los we love. It is not about changing them but accepting them for who they are and where they are at this exact moment. This is helpful to me on those really tough days when you worry about the road your child is on and you feel lost at what to do next.

[heatherdeg]

I wish I could reach out and hug you. That was my son, too. And I worried about how people would treat him when he didn't even realize they weren't even engaged with him--but he so desperately wanted to be with them.

I don't have anything else useful to say. My son is turning 6yo tomorrow and is a different child, but he was more seriously affected at an earlier age--so he'd been in therapy since 11mo (plus dietary intervention and supplements). So he had a diagnosis at 3yo already. But at 4yo, I saw the same thing you're seeing and it scared me all the same--even after dealing with his issues for 3 years already.

The grief and worry are normal. Not fun, but normal. Hugs to you.

[nayma]

also want to say i'm glad you posted. putting your words out there obviously doesn't take your pain away, but i think it's a good place to start. the moms here can relate to what you're saying, and frequently to how you're feeling. i lurked here for a while (pre-diagnosis), and it's been a lifesaver.
watching our kids try to socialize is tough sometimes. and this whole process is so scary and sad sometimes - i hear you. as cliche as it is, and everyone will say this, your son has not changed. he is the same little guy you birthed, held, guided, and celebrated. i'm not going to lie and say i'm ready to welcome and celebrate the autism in my daughter's life, but we're getting to a more peaceful place little by little.
keep venting. and i hope you'll look into finding a support group in your area...

[sbgrace]

Welcome. I'm glad you decided to post. I think you'll find support here and those who understand.

I've cried over very similar things with my son. He's almost six now and has developed a lot in areas that I didn't expect. In other ways his differences are more obvious to peers. And it's painful for me (not so far for him). I take one day at a time as much as I can.

I want to say that the beginning of facing this stuff is hardest emotionally. You're in the toughest place now I think.

[earthmama4]

It is a shock when you find out your son is different. Its a loss, a loss of the dreams you had for him. I started struggling with my oldest son at age 2.5 and at 4 my son was diagnosed with anxiety and OCD, I think they didn't know as much about diagnosing higher functioning kids because no one suspected autism. He struggled for ten years, we all did, not knowing the real issue was autism. He was diagnosed with Aspergers at age 13. For me, the diagnosis brought shock and grief, but also relief, a plan, a direction. I finally understand my son, and that part is wonderful. I grieve now not for the loss of who he is, but for the loss of ten years of time when we just didn't know how to help him.

Putting a name on it doesn't change who he is...its just what we call a collections of symptoms. I have possibly three on the spectrum (awaiting evals for my 11 yr and 8 yr old) and can see in my own house every day the vast ways this spectrum manifests itself. There are weaknesses to be sure, but there are remarkable strengths in these kids too. I have found it really helpful to read and learn as much about ASD as I can. Currently I am really enjoying reading the perspectives of adults with ASD as they reflect on their childhoods and what worked for them and what didn't and also just gaining insight on why they do the things they do. The effect for me has been a lot of fear has been erased as I see these very real, thinking, feeling people who just have a different way of relating to the world. It helps me to see inside my son just a little better.

[kme]

Hugs to you! Your son sounds a lot like mine! My son is also "borderline". His CARS score at 2.5 was 23. So we were told he did not have ASD. However, as the years have gone by it has become apparent that he is on the spectrum. He is 6 now and we have had many evaluations and many diagnoses - ADHD, mild ASD, SPD, NVLD, etc. We still aren't sure what the "correct" dx is. He still struggles with socialization but also doesn't seem to care all that much. He simply doesn't need a lot of friends although he likes other kids and gets along with them. As the parent of 3 other very social, outgoing kids with lots of friends, this sometimes makes me sad but it doesn't seem to make HIM sad. He is a happy kid.

He spent 2 years in special ed and now receives private speech therapy and OT. He has come a long way, he is a lot different than he was at 4. Your son will probably surprise you too.

I still have "sad" days but they are fewer than they were when he was preschool age. I worry about the future - esp middle school years. But I try to remember that a lot could change between now and then both with him and with me. I TRY to take it one day and one challenge at a time rather than getting worked up about what is to come.

This is a great group and you will find lots of support here.

[mistymama]

Here's a big hug for you

I think we've all been in your shoes and it just takes some time to accept everything.

In our case ds was in early intervention for speech and sensory issues, but at age 3 didn't quite qualify. I hoped against all hope that he was just a little quirky and not on the spectrum.

But last year in Kindergarten it was painfully obvious. Last summer we got the diagnosis of Aspergers and ADHD. I totally understand your sadness, pain and worry that your son will not fit in or worse, get hurt or bullied.

I must say - having the diagnosis does give you power. You can begin to research, read and figure out how to help him. We started seeing a psych that specializes in ASD kids and he works with ds about 1-2x a month. We were able to get him an IEP at school so he got matched with an AWESOME teacher and also gets pulled 2x a week to work on fine motor and social skills.

He's thriving. He's making friends. He blends in pretty well and seems like most of the other 7 year old boys. Sure, there are times he struggles and social things he does not get. We had to put him on meds for the ADHD and that has helped his self esteem a ton. But overall, he's an average (albeit super intelligent!!) regular kid.

Remember that the diagnosis does not change your child - he's still your same, sweet little boy. The diagnosis will help empower you to give your child all the tools he needs to be successful.

[Linda on the move]

Originally Posted by earthmama4

I have found it really helpful to read and learn as much about ASD as I can. Currently I am really enjoying reading the perspectives of adults with ASD as they reflect on their childhoods and what worked for them and what didn't and also just gaining insight on why they do the things they do.

What are you reading? It sounds GREAT!

For me, getting a dx is about being able to communicate more easily with other people in my DD's life -- teachers and such. It's just the label that our culture uses to describe people with certain traits. Dx's can change over time. For kids like ours on the mild end of the spectum, exactly what is expected of a child their age seems to effect which traits are a bigger deal. For kids with classic austism, pronoucments about what they will or won't be able to achieve are often wrong. Rather than seeing any ds as set in stone, I think of it as "this is the word our culture currently uses to describe kids who have the traits that this child *seems* to have at this time."

My DD has real strengths and is an amazing person. She recently got interested in photography and takes amazing pictures. I feel better when I can stay focused on, or at least remember, the things she is good at!

I try to live in the moment with my DD -- stay focused on where she is Right Now and not think too much about the future, because the future kinda freaks me out. We've gone through long periods when things go really smoothly her, and really rough patches where nothing seems to work. By *work,* I just mean that she seems reasonably happy and she seems to be making progress in her life. Parenting her is definately a different deal than parenting my typically developing child.

Rather than applying *my* standards of success and happiness on her, I try to look at her life from her perspective. Rather than judging whether or not I'd be happy with her day, I try to figure out whether or not SHE was happy with her day.

[2boyzmama]

<<hugs!!!>>

I come here about my middle son who has lots of medical special needs (birth defects and such) but after being on this board for 2+ years, I've come to realize that my oldest son isn't as "typical" as I had thought. Just recently I broached the topic of sensory and behavior with his teacher and the school's OT and in some ways it felt really good to put it all out there, in other ways it is forcing me to face it and that is scary.

There will be good days and bad days. For him AND for you. It's okay. Come here to vent, to share progress, to ask questions, whatever

[hhurd]

Originally Posted by earthmama4

Currently I am really enjoying reading the perspectives of adults with ASD as they reflect on their childhoods and what worked for them and what didn't and also just gaining insight on why they do the things they do. The effect for me has been a lot of fear has been erased as I see these very real, thinking, feeling people who just have a different way of relating to the world. It helps me to see inside my son just a little better.

Could you post the titles please? I'd love to check them out.

[PeachBaby]

May I toss this out as a possible resource,... and from there, leave it completely in your hands to decide whether or not you think this may be helpful or not?

Pecanbread.com (also breakingtheviciouscycle.info)

You may also want to check out their pecanbread discussion group on yahoo to see the successes as well as challenges that are faced when trying to implement the SCD (diet). It is not necessarily easy to do, so a lot of preparation and understanding of the concepts may help increase the chances of success.

Or you may decide that this is not what you want to do. Either way, you can't make a decision if you never heard of it, so that is all I want to do, is to just mention this so that you can decide for yourself.

Best of luck to you as you try to help your son!

[sbgrace]

Originally Posted by PeachBaby

May I toss this out as a possible resource,... and from there, leave it completely in your hands to decide whether or not you think this may be helpful or not?


Or you may decide that this is not what you want to do. Either way, you can't make a decision if you never heard of it, so that is all I want to do, is to just mention this so that you can decide for yourself.

Best of luck to you as you try to help your son!

I understand the desire to share what helps your child. If I thought what has helped my son was helpful to a broad range of spectrum kids I'd shout it out too. Instead I share our experiences when it seems like the child in question might be like my son in terms of underlying issues. Anyway, the diet refered to in PecanBread harmed (very much/could have killed) my borderline spectrum child who has an (unknown at the time) underlying metabolic issue that means too much fat or protein are harmful. I've met several other parents with the same experience with that diet and their kids with unknown metabolic issues. Since metabolic (particularly mitochondrial dysfunction) is relatively common in spectrum kids I want others to be very careful to keep balance in diet changes in terms of protein/carbs/fat ratois. That diet often gets carb calorie restrictive and so it must be used carefully and cautiously in my opinion. I know there are others that found that diet or others helpful for their kids. I guess I just want to caution the original poster because it was so compelling at first for me at first to want to latch on to something to fix my son. I don't think it's ever that simple (or possible to grab something that fixes a child at all) and there certainly isn't any one anything that helps every child on the spectrum or every child in general for that matter. But I appreciate the desire to share what you've learned to help others and you're so right that if a person doesn't know of an option they can't evaluate it. I hope I've not been offensive as I don't intend to be and I get the motivation.

[earthmama4]

Originally Posted by Linda on the move

What are you reading? It sounds GREAT!

Originally Posted by hhurd

Could you post the titles please? I'd love to check them out.

I am reading two books by Chantal Sicile-Kira "Autism Life Skills" and "Adolescents on the Autism Spectrum". She quotes extensively from books written by ASD adults and conducted interviews of many ASD adults as well as her own autistic son who is now a teen, and uses their personal accounts throughout both books. Here are some of them that I hope to check out soon so I can read them in their entirety.

"Thinking In Pictures" by Temple Grandin (Autistic)
"The Mind Tree" by Tito Mukhopadhyay (severely autistic, uses communication device to write)
"Freaks, Geeks, and Asperger Syndrome" by Luke Jackson, (13 yr old with Aspergers)
ImAnAspie.com - not a book but a website created by Brian King, LCSW (describes his perspective on having Aspergers, dx in his 30's)
"Like Colour to the Blind" and "Autism: An Inside-Out Approach" by Donna Williams (Autistic, severe SPD, written nine books!)
"Send in the Idiots" by Kamran Nazeer (ASD)
"Unwritten Rules of Social Relationships" by Sean Barron and Temple Grandin (both ASD)
"Autism-Asperger's & Sexuality: Puberty and Beyond" by Jerry and Mary Newport (a married couple who both have Aspergers)

There are probably many others ladies, but I can't dig them all up. Baby is super whiny, I think he's sick. Anyway, the books by Chantal Sicile-Kira are really good, I am still reading them.

Here's a little excerpt that I read in the book, written by the 13 year old author with Aspergers:

"Sometimes it is too hard to concentrate on listening and looking at the same time. People are hard enough to understand as their words are often so very cryptic, but when their faces are moving around, their eyebrows are rising and falling and their eyes are getting wider, then squinting, I cannot fathom all that out in one go, so to be honest I don't even try." - Luke Jackson, Freaks, Geeks & Asperger Syndrome: A User Guide to Adolescence

Since reading that, I don't push the eye contact issue with my son. I recognize he actually might hear and understand me better when he isn't looking at me! Looking at me distracts him from hearing what I am saying. In checking with my son (who is also 13) he confirms that completely, just smiling and nodding his head saying, "Yep, that's why its hard to pay attention to what you are saying."

Hope that helps mamas!

[PeachBaby]

Originally Posted by sbgrace

Anyway, the diet refered to in PecanBread harmed (very much/could have killed) my borderline spectrum child who has an (unknown at the time) underlying metabolic issue that means too much fat or protein are harmful. I've met several other parents with the same experience with that diet and their kids with unknown metabolic issues. Since metabolic (particularly mitochondrial dysfunction) is relatively common in spectrum kids I want others to be very careful to keep balance in diet changes in terms of protein/carbs/fat ratois. That diet often gets carb calorie restrictive and so it must be used carefully and cautiously in my opinion. I know there are others that found that diet or others helpful for their kids. I guess I just want to caution the original poster because it was so compelling at first for me at first to want to latch on to something to fix my son.

Thank you sbgrace for the warning. I am so sorry to hear of your negative experience with this and am very appreciative of your cautionary sharing. to you too and I wish all the best for you and your child.

[PNWmama]

I could have written your post. My ds has not been diagnosed with ASD yet, but I really will not be surprised if it turns out he's on the spectrum.
I just wanted to let you know that you are not alone in your feelings.

[cchrissyy]

I've cried over very similar things with my son. He's almost six now and has developed a lot in areas that I didn't expect. In other ways his differences are more obvious to peers.

Same here for my boy who just turned 7


Valencia,
there are a few big ways that diagnosed is actually better than suspected or borderline. While it may be hard to take, a diagnosis means more treatment, more services, more supports, and therefore better chances for his future.

[serenetabbie]

Valencia; I have no more advice for you, but could not read and not comment. I can completely understand. Please know, you are not alone and we are all here to listen anytime.

:

[Wugmama]