Just feeling a little overwhelmed tonight, (Update Pg 3 7/3/08)

[khomer504]

We are in month 5 of speech, occupational and developmental therapy for my 2.5 year old son. Suddenly, after 5 relatively calm months... I'm afraid I've had a minor meltdown tonight, and I just feel an undeniable need to pour out the things that are weighing on my heart. I don't know why I feel compelled to post it here. I've never been much of a forum poster, but for some reason I feel like letting all my feelings out there. I've been reading parts and pieces of this forum the last 2 days. I don't know anyone here, maybe that makes it easier. That and the fact that I'm fairly certain no one here will judge my moment of weakness. I read some of the posts from the amazing individuals and parents on this board and I feel a little guilty for having my momentary pity party, when in reality I am so blessed in so many ways. Anyway, please don't feel any obligation to read (this is going to be painfully long, trust me!), just know that I'm an overtired mom of some phenomenal kids, and I'm just feeling a little inadequate tonight... So heres the rant that I just can't keep inside.

My DS is 2.5 years old, he and his sister (5.5 years old) light up my life in a way I'll never be able to put into words. Abby lights up my life in an every day little girl way that is brilliant, and mind boggling all at the same time. She's overwhelmingly intelligent, sweetly sensitive, silly, witty, sharp, nurturing and mature beyond her 5 short years.

My little Andy is mostly non verbal at this point, a definite sensory seeker, significantly delayed in both expressive and receptive speech. And he is magical and mysterious. He is so huggable, and loving. He's always looking at me with this silly little grin waiting to be tickled, or turned upside down, or chased into the other room so he can run away laughing. There are little things going on in his mind that he doesn't know how to share with me, and that I'm afraid I'll never find out on my own. He keeps his secrets locked away and shares them with his "guys" which are his favorite little toys. He lays in bed at night talking to himself, or to someone/something I can't see. For an hour or more I hear him in there totally content in his big boy bed laughing, babbling, squealing... having a little party all his own. He does the same thing in the morning when he wakes up, content with his own company. He is so easy to be with, so easy to take care of, just so easy in every way. He grabs my hand and drags me around the house to show me things, or ask me for what he wants. He lights up like the sun when he plays with his big sister. They are miraculous together. I just fill up with unexplainable joy watching them, playing with them, tucking them in at night. I'm so afraid people are going to think I feel burdened, or that I'm complaining. I am not burdened, and I have nothing to complain about. I'm just scared....

I feel inadequate to be an advocate for this sweet little boy. I love him, and I accept him, but it pains me to admit I don't always understand him. And not understanding means I don't always know what he needs. Up until this point I've taken all my cues from the 3 therapists that come into my house to work with him. As fabulous as they are, it occurs to me that I need to be less afraid if I am going be the best advocate for him. Does he have sensory processing disorder? Absolutely, he has sensory issues. That much at least I have a good grip on. Is he autistic, or on the spectrum? I have no idea, cause I shut down everytime the word enters my mind. Our speech therapist referred me to a book called "More than Words" I was so excited to look it up... until I saw that it was for autistic children. At that point I didn't have any interest in it. What is wrong with me? Why am I so scared of the possibilities? Would any label change the joy that I feel when I look at my son? Absolutely not! Maybe I'm doing a disservice to him by blocking any potentially negative thoughts from my mind. Maybe I'm trying to stay positive as a way to help him. I don't know, and I don't know what the best approach is. I'm scared of so many things...
Scared that people are going to judge him by a label.
Scared that the therapists are lumping him into group and treating him how they expect him to be, rather than how he really is.
Scared that by trying to be his "safe haven" that I am being too passive about helping him grow and learn.
Scared that if I am more active in trying to teach and work vigilantly on techniques and language, that I'll be part of the stress and stop being his "safe haven" and then where does he find that safety and security?
Scared that I won't find the balance in how to be mother and teacher.
Scared to know that at daycare he plays be himself and sits on the sidelines at circle time, and knowing no one there understands him, or takes extra interest in him.
Scared I won't find a place where the people understand him and take interest in him. He doesn't get a lot of extra attention, the squeaky wheel gets the oil, and Andy isn't squeaky, he's content, so people leave him alone.
And I'm scared that I was too complacent in noticing what has going on with him, because he was always so happy and easy going, he never did squeak, so we never went out of our way to look for problems.
Mostly, I am so so scared that I'm not ever going to fully unwrap the mystery of my delightful little man. That I won't be the mom he needs to make the best out of his life, and to give him the most chance at success.
I don't know what all the answers are, or what the right treatment approaches are. As a mom, I know certain things to be true about my son, and I'm holding onto them for now. I feel as if time is ticking away too quickly and I can't keep up. So I'm just going to hold onto what I know, and pray to God that I don't take us down the wrong path.

Thanks for letting me take some space on the board tonight. Like I said in the beginning, it's a little out of character for me, but I just felt like I was going to over flow if I didn't purge a little. I can't tell you how much I appreciate having this safe place to let it all out.

Best wishes to all,

Karen

[alizesmom]

Karen, doesn't sound like a pity party to me. You have legitimate concerns for your child's future. You have done nothing wrong or delayed too long. You will grow as an advocate as time goes on, it just happens. Some of us grow quickly and some of us take a little more time. As to your reaction to a possible autism diagnosis, take time, it may be a case of denial or your gut feeling that that's not the right diagnosis. We all have certain things we fear most. "let it be anything but that". Also sometimes we know what it is in our hearts but just don't want to hear it because then it becomes too real. I think you needed this meltdown. None of us is superwoman and we all need to vent sometime. This is a good place to start. We will listen, we will not judge and we will care. I hope I have helped a little. The biggest thing to tell you is that you are normal. Oh yeah, no child's problem is smaller than another's. My child may be more complex but that's all. Karen

[LuvsTinker]

Karen,

Because you have those thoughts and feelings is makes you a good and understanding mom.

My son is 8 - he was pretty much non-verbal at 2 - just a few words and wasn't putting words together. He was always lovable and just never gave us any reason to think there was more going on until he started getting older and it was so obvious he had a processing disorder and language delay.

I went through many difficult days of my own and many tearful nights. Always thinking the same thing as you, how can I handle this, maybe I'm not strong enough to be a good advocate for him.

I still have my bad days from time to time but not nearly as much as I use to.

Turns out my son is PDD-NOS and is struggling with socialization. I've always had and still do have a hard time accepting that he actually has autism. There is something about a label that does distort your thoughts. But, you're right, it's not going to change who your child is right now if he gets a label.

I ended up turning to an online forum for parents of ASD and PDD children, it was just so hard to talk to friends and family that did not understand what I was feeling or what was really going on in our lives. It did help me a lot.

I wish you the best - it's not an easy road, but do stay strong for your children, especially your son who really needs and loves you. :hug:

[PrincessSuzanne]

:hug: to you. While I can't say I exactly know how you feel, I have a cousin that your story almost exactly describes and I love him more than anything. He has been diagnosed with Autism and it doesn't have to be label. There are alot of help and alot of resources out there, alot of understanding people waiting with open arms.

Our little (not so little anymore) Jonah is almost 6 and was diagnosed at about 2.5 years and was also non-verbal, but today he communicates very well with alot of help and understanding, that is. At first we thought maybe it was because he had an older sister, but it became evident later on that that was not the case.

Jonah is the sweetest boy you would ever want to know and I know just when he comes to my house because he rings the doorbell endlessly until you answer and then he almost knocks you over with his hugs, then he pulls your face in close so he can tell you that he loves you and that is something I will always cherish, because we never thought it was possible

There are alot of mothers and fathers here for support.

Good Luck in whatever you decide and know that you do have support.

Suzanne princess:

[Forevryoung]

I put this out there- as a possible "help" to open those doors FOR NOW. I am not saying anything about tomorrow- I promise.

There are tools out there that can provide expressive output using pictures or symbols. It's a great way to provide receptive language input as well. I suggest looking into it.

This is what my research was in (finishing up a masters in speech therapy)- providing 1-2 year olds with Down syndrome a way to express themselves before they started using their speech for first words. Their language skills (receptive and expressive!) grew quickly with minimal intervention.

Feel free to PM me with specific questions or for more information. Many speech therapists aren't aware that these things help like they do.

[SueM in MN]

I don't have a lot of time to write now because it is very late.
I don't think there are any parents of children with special needs who haven't felt the way you do from time to time.
Sometimes, you feel like everything will work out and sometimes it seems like the path you are following is full of fog and you are not sure you are even on the path.

Another thing to keep in mind, if it helps you to look at some of the resources, is that children often have similar needs/things that might help, even if they have a very different diagnosis. My youngest DD does not have autism, but some of the books about autism have hints/techniques in them that help her nevertheless.

Also, 2 and 1/2 year olds are pretty changeable creatures anyway, even without having any special needs. Things can and do change with therapy, so even though it sounds like you are looking at endless tomorrows with him having the same struggles as today, that might not be the actual future.
One thought I have borrowed from AA (although I don't even know any members) is taking each day, one day at a time.:grouphug:

[BeckyScott]

:hug:

Yes, we've been there done that.

Some random thoughts-

As far as being a good advocate, you're still in training. He's still young. That part will get better.

And it might tie in with the autism, if that's what's happening. When you get the label, it's easier to ask other moms or do your research and you know better what you're up against and what treatment options you have and the confidence will come. My son is 7 and first started therapy at 18 months, and I was very lucky because the therapists were open and friendly and tried to train me too. And I have always been quite the cooperative parent, it's only been in the past 6 months that I've started to get more brave, to question people. Jenny McCarthy also said that "her son is her science"-- that she might not have a medical degree or a psychology degree but she knows her son better than they all do. You gotta trust that, trust yourself.

When our son was diagnosed, my husband and I broke into two distinct camps. I was the researcher/ scientist/ IEP terminology expert. My husband, I thought it was denial, told me outright he didn't think anything was wrong with Justin and he had no intention of treating him any differently than a "normal" kid. As it turns out, the two of us on two different poles is working out. We each contribute something important. It would be a travesty if Justin didn't get the extra things he needs. But the truth is, some day he's going to have to function in the real world, and it's important for him to learn that too. It's important to have just a regular mom sometimes.

The big thing on this journey is that he's made me a better person. Yes okay, I don't handle stress well and that's brought it's own problems to me. But somewhere on this journey, excuse the language, I grew balls. Big ones. :woohoo: I was never like that before. Because I feel such a strong urge to advocate for him, I'll get in people's faces when it's necessary. And I'll ask questions and expect the truth.

Do you trust the therapists he has now? Are they good people? Tell them how you feel. They are there with you, and may know of resources you don't. When we first started therapy, I remember I was trying so hard to be the brave mommy, so positive, so shiny. One day the OT was here on a particularly rough day, and I lost it. And she told me, she had no idea, I'd always seemed so put-together, why hadn't I said something before. And she helped me too.

[khomer504]

Thank you so much to everyone who responded. I dumped all my thoughts out on this poor unsuspecting forum last night, and then I just had to walk away from it for awhile. I woke up this morning feeling a little stronger and less emotional. I thought I was over the tears for awhile. Now I read all these wonderful posts, and the tears are back. But, honestly, I'm a little less sad and scared than I was last night, and a little more relieved.

I feel lucky that this "Disney World" forum just happened to have a place
where I could open up a bit, cause I'm not sure I had the guts to explore for an environment dedicated to children with delays like my Andy. I just stumbled upon this, and it was obviously a right first step for me, cause I feel a little less alone now.

It's obvious I need to get out there and explore, I had to look up with PDD-NOS is, you'd think a mom with a little boy like mine might have looked into those things more... I will now.

ForvrYoung - Our speech therapist is introducing PECS to us, and it's been hard. Your right, part of my reluctance I'm not ready to give up on actual speech for him yet, and I hadn't thought of compensation (though we do sign language a bit). And Andy struggles with the PECS. There are only a couple of things motivating enough to him to get him to try it, and one of them is food. And if he has to work for every single fruit snack, he gets seriously ticked off, it's an ugly scene. But I took pictures of his favorite snacks last night, and I'll print them up today. At least he can use the pictures to make choices and tell me what he wants.

Anyway, I'm off to work. Again, thank you so much for all your warm and understanding responses... it means a lot to me today.

Karen

[KirstenB]

Karen, I think your Andy and my Zoe could be twins separated at birth!:goodvibes Zoe has a September birthday, and is 2 and 5 mths also. Her therapists say she has sensory processing disorder, not autism. The developmental peds (who have only seen her twice for 1 hr each time) say she has high functioning autism. I've read some books on autism, and they did have some helpful info about sensory issues. One book in particular you may have already read is "The Special Needs Child" by Dr Stanley Greenspan. He really helps define the overlap, yet also the differences between sensory processing disorder and autism. I got a lot of good hints for working with our daughter.

We took Zoe's regular milk, and swapped it for soy milk. This seems to make her more alert, and more eager to "join the group", less daydreamy. She's a great eater, so I haven't pursued the rest of the gluten/casein free diet that has worked for some kids.

We do sign language with Zoe, and have introduced PECS to her, but haven't seriously committed to it yet. I'm guessing we'll need to get serious with PECS because she'll start special ed preschool in the fall. I need to ask her speech therapist about that.

Zoe's really cuddly, and laughs a lot when we horseplay. But she still lags behind in what I'd call "toddler humor". She doesn't understand when she sees something silly on tv, or we do something silly. She gets kind of a confused look on her face.

Anyway, enough about her. I just cant' believe how similar our children are. I wish I could meet you in person and give you a big hug. I know how you feel. It's hard when your child is different. Come here anytime. A lot of the parents have older kids with similar issues, and I've learned a lot from them.

[freckles and boo]

My daughter will be six in April. I could have written your post three years ago. When she was little I put her to bed every night saying "I wish you could tell me what you are thinking". I didn't want to accept that it was anything other than a speech delay. I was also terrified about doing the wrong thing and for a long time that meant I didn't do anything. It was her Early Childhood teacher and OT that helped us understand her sensory issues. Addressing those issues jump-started her language. She was nearly four before she started answering yes or no questions, but now she is able to actually hold a basic conversation. She is academically on par with her typical peers (she is very bright), although she is in a special education kindergarten. There are still plenty of social and language issues, but we don't feel that hopelessness anymore. I continue to save for her college education and we err on the side of normal in every expectation. She takes ballet (she is with girls a year younger) and she goes to swimming lessons and she is teaching herself songs from her sister's piano lesson books. She is her own weird, wonderful little self and I am very proud of her. :goodvibes

I think your feelings are completely natural and I hope you realize that you aren't alone. You clearly love your son and that love will get you through the rough times. Hang in there. :hug:

[brettgirl]

Hang in there!!! There are days that I don't feel like an advocate and need a kick in the pants and I work with autistic kids/elementary school teacher background.

I feel like I was you. My son was in early intervention when he was 18 months and he is going on 7 now. We went through sensory integration, anxiety state and hypotnia diagnosis' to PDD/NOS and now he is consisdered a high functioning autistic child with anxiety (boy, does he.....). I am fearing an aspergers diagnosis around the corner. He has had therapists at the house before three years old, gone to a special needs nursery school, attended Title ONe preschool and now is in regular education.

I was not surprised by his diagnosis we looked at it as WOW, now we can get money from the state to help us!!!! Even with his latest diagnosis of Autism my husband said, how can the state help us now? All of the help we have received has made a BIG difference in his life and ours.

Just to give you hope-at 2 Nico did not speak! He is now in regular first grade with a TSS for 30 hours (she keeps him on task). I know he will go to college, get marrried and do all of the typical things.....it might take longer.

He has never played with typical toys (spun wheels instead) and he is just starting to build and has a keen sense for music-takes electric guitar lessons and has almost perfect pitch. You will find a "nitch" for your child and go with it, I found the "nitches" changed.

Challenging???? Oh, yes. Getting our kids to conquer the littlest things brings smiles to our faces that others don't understand, that in itself is a wonderful conquering feeling. I never felt this much when my typical daughter did things it was expected.

My son is the cutiest and so very smart, I would not trade all of his quirkiness for the world. He is a gem and so very good behaviorally (mind you there are days when if he flaps or makes his eyes do weird things one more time, I will scream).

Funny story about our last visit to disney-our son did not want to go into the pool (terrified him) so we put the life jacket on him just in case and all he did while we were enjoying the cool water was to organize shoes and open and close the laundry room door (POR quiet pool area), everyone thought he was such a gentleman!!!!! My goal in May........get him IN the pool, he has even taken swim lessons and this month took his first shower with my cap on!!!!

Help is here.......don't be afraid, your boy will always be your boy, the one you love today, tomorrow and the next.......that will NEVER change.

brettgirl

[Forevryoung]

Guys, strongly consider that there is more out there than PECS (it only works for certain kids).

PECS (and other options) are NOT to be considered "a replacement" for speech (unless consistent, intelligible speech is completely unrealistic for other reasons like Sue's daughter who has CP) and you aren't "giving up" on speech by using a tool- you are learning what your child wants and likes and needs, what they are thinking about... and in the long run, that is the most important thing.

Personally, I'm not a fan of "modified" PECS (the true program advances past my issue) in many circumstances because it only promotes requesting, most frequently with a food item (highly motivating!)

[khomer504]

Karen, I think your Andy and my Zoe could be twins separated at birth!:goodvibes Zoe has a September birthday, and is 2 and 5 mths also. Her therapists say she has sensory processing disorder, not autism. The developmental peds (who have only seen her twice for 1 hr each time) say she has high functioning autism. I've read some books on autism, and they did have some helpful info about sensory issues. One book in particular you may have already read is "The Special Needs Child" by Dr Stanley Greenspan. He really helps define the overlap, yet also the differences between sensory processing disorder and autism. I got a lot of good hints for working with our daughter.

We took Zoe's regular milk, and swapped it for soy milk. This seems to make her more alert, and more eager to "join the group", less daydreamy. She's a great eater, so I haven't pursued the rest of the gluten/casein free diet that has worked for some kids.

We do sign language with Zoe, and have introduced PECS to her, but haven't seriously committed to it yet. I'm guessing we'll need to get serious with PECS because she'll start special ed preschool in the fall. I need to ask her speech therapist about that.

Zoe's really cuddly, and laughs a lot when we horseplay. But she still lags behind in what I'd call "toddler humor". She doesn't understand when she sees something silly on tv, or we do something silly. She gets kind of a confused look on her face.

Anyway, enough about her. I just cant' believe how similar our children are. I wish I could meet you in person and give you a big hug. I know how you feel. It's hard when your child is different. Come here anytime. A lot of the parents have older kids with similar issues, and I've learned a lot from them.


Kirsten, thank you so much for your message! Our little ones are almost exactly the same age too, Andy's birthday is 9/21.

The only things I've read so far are related to Sensory Integration, and Sensory Processing Dysfunction. And they definitely are applicable, but I just don't think it's the only thing going on.

As for sign language, Andy signs "more" on occasion if he is highly motivated for something, and he consistently signs "all done" when he wants to get down, or stop playing something. How's Zoe doing with the signing? We watch the Signing Time DVD's and the weekly show and Andy LOVES it! It really captivates him. Though I'm not sure he's learning from the show, it's more like I'm the one learning from the show, then I pound it into him!!

Andy gets the "toddler humor" a bit, for instance ever since he was about 18 months old he cracks up watching Lilo and Stitch, almost always at the scene where Stitch builds a little city and then destroys it like godzilla! It's hilarious to watch him, he gets so excited anticipating it.

Please feel free to PM me anytime, sounds like our kids might be 2 little peas in a pod!

Have a great night!
Karen

[khomer504]

:hug:

When our son was diagnosed, my husband and I broke into two distinct camps.

faces when it's necessary. And I'll ask questions and expect the truth.

Do you trust the therapists he has now? Are they good people? Tell them how you feel. They are there with you, and may know of resources you don't. When we first started therapy, I remember I was trying so hard to be the brave mommy, so positive, so shiny. One day the OT was here on a particularly rough day, and I lost it. And she told me, she had no idea, I'd always seemed so put-together, why hadn't I said something before. And she helped me too.

That is exactly how it will shake out with my husband and I. Chris is sure that he's just a little slow. This may be the only time in our lives that I pray that I am the one who's wrong!

And yes, I trust the OT at least. She's been such a blessing. The developmental therapist is pretty great too, but she seems reluctant to have an opinion. As for the SLP, we've only had her 4 weeks. I couldn't believe how well Andy took to her, but I'm still not completely sure. We'll see.

My daughter will be six in April. I could have written your post three years ago. When she was little I put her to bed every night saying "I wish you could tell me what you are thinking". I didn't want to accept that it was anything other than a speech delay. I was also terrified about doing the wrong thing and for a long time that meant I didn't do anything.


Thank you for that, it's exactly how I feel with Andy. And thank you for sharing your good outcomes with me, it really does help!


I feel like I was you. My son was in early intervention when he was 18
My son is the cutiest and so very smart, I would not trade all of his quirkiness for the world. He is a gem and so very good behaviorally (mind you there are days when if he flaps or makes his eyes do weird things one more time, I will scream).

Funny story about our last visit to disney-our son did not want to go into the pool (terrified him) so we put the life jacket on him just in case and all he did while we were enjoying the cool water was to organize shoes and open and close the laundry room door (POR quiet pool area), everyone thought he was such a gentleman!!!!! My goal in May........get him IN the pool, he has even taken swim lessons and this month took his first shower with my cap on!!!!


Exactly! Andy is so well behaved, and he would easily spend an hour rearranging something he thought was out of place. He used to line up toys a lot, though he's outgrown that a little in the last few months. He does love bathtime, but he hates when it's time to pour water over his head! He used to scream, now he tolerates me, but lets me know if I'm pusing my luck and taking too long about it!

Wow, I'm overwhelmed by the wonderful response, you ladies have been fabulous! I still feeling awfully emotional and tearful, but I'm getting my faith back, in myself, and in my little guy!
:goodvibes
Karen

[khomer504]

One more quick confession that I'm sure no one will believe. I'm actually an OT. I just have absolutely no experience with children, all of my work has been with adults, and they are worlds apart! Or at least they seemed to be, the more I learn, the more I'm not so sure! Being an OT is probably why I latched onto the Sensory Integration information so easily. I find it a lot less frightening!

Karen

[Mason7AK]

Karen, I don't have too much to add, as all these wonderful mom's have given you some great advice. Just adding :hug: and ecouragement. My DD, also 2 1/2, has SID and hearing loss. We are using signs with her and she is starting to really pick them up. It helps so much for her to have a way to communicate that she is comfortable with and doesn't stress her out too much to learn! We also have the Signing Times videos that someone else mentioned. They are fun and educational at the same time. My Emily really likes them! Your Andy sounds like a doll! Just keep plugging away one day at a time. And as for advocacy - that just comes with time!
Angela

[KirstenB]

Karen, Zoe's been signing for about 8 mths. She was resistant for a few weeks, then started picking it up. She signs for <eat, water, milk, more, ball, help, bird,> and we made up a homemade sign for when she wants to watch a movie, which she learned the same day. She loves the Signing Times and Bumblebee videos. I honestly think she'd sign as much as we were willing to teach her. Her speech therapist said not to focus too much on teaching her tons of sign language. She does use a few words, like <more, no, bird, juice, occasionally Ma or Da>. I see a lot of deliberate non-verbal communication in her, which has been really neat to watch. I keep saying I want her to use words deliberately, but really I've seen such great non-verbal gains, I've become less obsessed than I was with speech.

She's pretty underreactive. So we spend a lot of time getting her energized. When she's energized, that's when we see her make some gains. Her older sister who's 9 is very helpful at getting Zoe excited. Her speech therapist has brought us many toys to help get her revved up, so that's been a big help.

The last few months, I've become more hopeful. Don't get me wrong, it's hard to watch her around "normal" same age kids, because I do see where she's delayed. But when I see how far she's come, I get excited about her future.

[pcparamedics01]

Hi Karen,

I have an ASD son now 10. Wow he just turned last month. I cannot add anything that our wonderful Mom's have added for I saw this too late... We have a great group! Everyone helps each other on this thread and you will get a wealth of information. So cry, get mad and vent all you want... We are fine with that. We have all done it. I cannot tell you what your son's future will hold and he may not have issues. Many kids can be delayed at his age and soar... So do not speculate. Get him evaluated by a Dev Ped or a Clinical P.. I say this because I was you 7 1/2 years ago. I had every mad and angry you do. I did get him early intervention at 18 months but if anyone talked about Autism I was out of there. My husband sprinted if you said Autistic. For years my husband said he will grow out of it!!! We would leave the room if it was ever brought up. We got one diagnosis of Severe expressive and recessive language delay and we used it for years until age 8 years. Everyone knew but us. But not exactly I played the part. A Mom always knows. I would confide in only my best friends and parents with my secret so to speak.... I knew he was ASD all along even with the diagnosis. It made me feel better that I had a diag and not ASD. I would say leave it up to the Professionals however, deep down I knew....


So I can feel you pain, being scared, angry etc. I feel for you. However he is young. A lot can happen now. Also what I noticed from your thread he maybe non verbal but from what you wrote he plays and a lot of imaginative play in his bed. Most ASD do not have imaginative play. They can't be in battle so to speak and play with army men and say "look behind you" for example. Many times it's non existant. My son did that a bit. But not real true imaginative play that kids have. hang in there. Do not speculate. He is so young yet. So much can change...... Big hugs:grouphug: :grouphug:

[jodifla]

We are in month 5 of speech, occupational and developmental therapy for my 2.5 year old son. Suddenly, after 5 relatively calm months... I'm afraid I've had a minor meltdown tonight, and I just feel an undeniable need to pour out the things that are weighing on my heart. I don't know why I feel compelled to post it here. I've never been much of a forum poster, but for some reason I feel like letting all my feelings out there. I've been reading parts and pieces of this forum the last 2 days. I don't know anyone here, maybe that makes it easier. That and the fact that I'm fairly certain no one here will judge my moment of weakness. I read some of the posts from the amazing individuals and parents on this board and I feel a little guilty for having my momentary pity party, when in reality I am so blessed in so many ways. Anyway, please don't feel any obligation to read (this is going to be painfully long, trust me!), just know that I'm an overtired mom of some phenomenal kids, and I'm just feeling a little inadequate tonight... So heres the rant that I just can't keep inside.

My DS is 2.5 years old, he and his sister (5.5 years old) light up my life in a way I'll never be able to put into words. Abby lights up my life in an every day little girl way that is brilliant, and mind boggling all at the same time. She's overwhelmingly intelligent, sweetly sensitive, silly, witty, sharp, nurturing and mature beyond her 5 short years.

My little Andy is mostly non verbal at this point, a definite sensory seeker, significantly delayed in both expressive and receptive speech. And he is magical and mysterious. He is so huggable, and loving. He's always looking at me with this silly little grin waiting to be tickled, or turned upside down, or chased into the other room so he can run away laughing. There are little things going on in his mind that he doesn't know how to share with me, and that I'm afraid I'll never find out on my own. He keeps his secrets locked away and shares them with his "guys" which are his favorite little toys. He lays in bed at night talking to himself, or to someone/something I can't see. For an hour or more I hear him in there totally content in his big boy bed laughing, babbling, squealing... having a little party all his own. He does the same thing in the morning when he wakes up, content with his own company. He is so easy to be with, so easy to take care of, just so easy in every way. He grabs my hand and drags me around the house to show me things, or ask me for what he wants. He lights up like the sun when he plays with his big sister. They are miraculous together. I just fill up with unexplainable joy watching them, playing with them, tucking them in at night. I'm so afraid people are going to think I feel burdened, or that I'm complaining. I am not burdened, and I have nothing to complain about. I'm just scared....

I feel inadequate to be an advocate for this sweet little boy. I love him, and I accept him, but it pains me to admit I don't always understand him. And not understanding means I don't always know what he needs. Up until this point I've taken all my cues from the 3 therapists that come into my house to work with him. As fabulous as they are, it occurs to me that I need to be less afraid if I am going be the best advocate for him. Does he have sensory processing disorder? Absolutely, he has sensory issues. That much at least I have a good grip on. Is he autistic, or on the spectrum? I have no idea, cause I shut down everytime the word enters my mind. Our speech therapist referred me to a book called "More than Words" I was so excited to look it up... until I saw that it was for autistic children. At that point I didn't have any interest in it. What is wrong with me? Why am I so scared of the possibilities? Would any label change the joy that I feel when I look at my son? Absolutely not! Maybe I'm doing a disservice to him by blocking any potentially negative thoughts from my mind. Maybe I'm trying to stay positive as a way to help him. I don't know, and I don't know what the best approach is. I'm scared of so many things...
Scared that people are going to judge him by a label.
Scared that the therapists are lumping him into group and treating him how they expect him to be, rather than how he really is.
Scared that by trying to be his "safe haven" that I am being too passive about helping him grow and learn.
Scared that if I am more active in trying to teach and work vigilantly on techniques and language, that I'll be part of the stress and stop being his "safe haven" and then where does he find that safety and security?
Scared that I won't find the balance in how to be mother and teacher.
Scared to know that at daycare he plays be himself and sits on the sidelines at circle time, and knowing no one there understands him, or takes extra interest in him.
Scared I won't find a place where the people understand him and take interest in him. He doesn't get a lot of extra attention, the squeaky wheel gets the oil, and Andy isn't squeaky, he's content, so people leave him alone.
And I'm scared that I was too complacent in noticing what has going on with him, because he was always so happy and easy going, he never did squeak, so we never went out of our way to look for problems.
Mostly, I am so so scared that I'm not ever going to fully unwrap the mystery of my delightful little man. That I won't be the mom he needs to make the best out of his life, and to give him the most chance at success.
I don't know what all the answers are, or what the right treatment approaches are. As a mom, I know certain things to be true about my son, and I'm holding onto them for now. I feel as if time is ticking away too quickly and I can't keep up. So I'm just going to hold onto what I know, and pray to God that I don't take us down the wrong path.

Thanks for letting me take some space on the board tonight. Like I said in the beginning, it's a little out of character for me, but I just felt like I was going to over flow if I didn't purge a little. I can't tell you how much I appreciate having this safe place to let it all out.

Best wishes to all,

Karen


First of all, I think every mom who has a child with any kind of differences or issues has been where you are!!!

Also, re: the therapist that recommended the book. Autism is the diagnosis du jour these days, like ADHD was earlier. School systems are handing the label out like candy. So be sure whomever you have diagnose the root of your child's issues is well-qualified and can give you a DIFFERENTIAL DIAGNOSIS instead of slapping and ASD label on everyone they see who is different....lots of people who diagnose children don't know what they are doing, frankly.

Your child is still pretty young, and is dealing with the fact that as his peers' language comes in, he's not at that level. That happened to my son, and it was pretty frustrating for him. Just try and imagine the world if your communication was impaired!

We went to a university that was able to understand what he had, and give us a specific road map of how to get where we need to be. I can't tell you what a difference that has made in our lives.

Also, I belong to a late talker's board, and I can tell you there are children who said nothing at 2.5 who were normalized by 3.5.

PM me if you'd like any more info. I can give you some great contact info and other resources you might find interesting.

Good luck. Your child sounds amazing!

[tweedlemom]

Hi Karen! I was you, 3.5 years ago! My son barely spoke a word at 2. We did Early Intervention for Speech and OT, as well as PECS and sign language--both of which he responded to. My question to you is have you contacted your school district's Child Study team? That was a very difficult call for me to make, but at age 2.5 I called to get the evaluation/classification process rolling so that when he turned 3 (when he aged out of Early Intervention) he could easily transition into the school's Preschool Disabled Program. The program worked wonders! He started the day after his third birthday, and he was in the program for 3 years. The socialization was great for him, and last year he was mainstreamed into the town's rec. preschool program once a week as well. Today, he is in a self-contained kindergarten and he is doing really well. He gets outpatient speech and OT and is involved in a local Special Needs athletic program that provides free bowling on Saturdays. Yes he does have a one on one aide, and yes he did eventually get an autism diagnosis (last month), but we love him because he is PERFECT just the way he is. He has worked so hard and overcame so much and we are so proud. Each child is unique and no one knows what path you'll take, but trust your gut and keep doing everything you can for the sake of your son and you will be just fine. I am so glad you posted because you need to know that you are not alone. So many of us have gone through what you are experiencing and you need to know that there is a light at the end of the tunnel. You have a right to feel overwhelmed and scared because being the parent of a special needs child is not easy. It is a journey and you will be OK!
Also, Karen, have you ever seen this poem?

WELCOME TO HOLLAND

by Emily Perl Kingsley

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland."

[khomer504]

Also, Karen, have you ever seen this poem?

WELCOME TO HOLLAND

by Emily Perl Kingsley

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland."

No, I have never seen that before, and I think it touched me deeper than anything else has these past couple weeks. Thank you, I really needed that. And that's exactly what I'm doing... looking for my new guidebooks, and learning my way around.

Karen

[pcparamedics01]

[QUOTE=jodifla;22628630]School systems are handing the label out like candy

You are sooo right about that!!!! They love to pull the Autism card!!!!

[khomer504]

[QUOTE=jodifla;22628630]School systems are handing the label out like candy

You are sooo right about that!!!! They love to pull the Autism card!!!!

Exactly! I did decide to request that Andy have a medical diagnostic evaluation... but I'm concerned that someone is going to meet him for 1 hour out of his life and slap him with a diagnosis... without taking a really thorough and critical look at what is going on with him. Working in healthcare, I'm all too familiar with how easy it is to be lumped into convenient groups.

On the other hand my OT warned me of this today too, but she offerred the comfort that at the very least an autism diagnosis guarantees access to so many more services than something less widely accepted, like a sensory processing dysfunction.

Karen

[jodifla]

[QUOTE=pcparamedics01;22637131]

Exactly! I did decide to request that Andy have a medical diagnostic evaluation... but I'm concerned that someone is going to meet him for 1 hour out of his life and slap him with a diagnosis... without taking a really thorough and critical look at what is going on with him. Working in healthcare, I'm all too familiar with how easy it is to be lumped into convenient groups.

On the other hand my OT warned me of this today too, but she offerred the comfort that at the very least an autism diagnosis guarantees access to so many more services than something less widely accepted, like a sensory processing dysfunction.

Karen

That's why you want to make sure the diagnosis is a good one. If I have breast cancer, I don't want to be treated for Parkinson's disease and hope the treatment does me some good.

I have a strong opinion (that some certainly disagree with) but I feel that no parent should be forced to get an inaccurate label just to get treatment. Children are entitled to get services for what they need help with, but schools will try to push you into programs that they already have set up.

From reading your first post, if feels like your DS's main issue is language- oriented. In that case, he really doesn't need a lot of the treatment for autistic children...he needs language treatement targeted to his needs (again, IMO).

Take ABA, which is a standard therapy for autistic kids. I was told that ABA would be the worst choice possible for my son by the university researchers, and to keep my child far away from it. It was likely to make him much worse, not better.

[belle&beast]

[QUOTE=pcparamedics01;22637131]

Exactly! I did decide to request that Andy have a medical diagnostic evaluation... but I'm concerned that someone is going to meet him for 1 hour out of his life and slap him with a diagnosis... without taking a really thorough and critical look at what is going on with him. Working in healthcare, I'm all too familiar with how easy it is to be lumped into convenient groups.

On the other hand my OT warned me of this today too, but she offerred the comfort that at the very least an autism diagnosis guarantees access to so many more services than something less widely accepted, like a sensory processing dysfunction.

Karen

Hi Karen.
I am an SLP with 10 years experience. I have worked for the past 3 years in public preschool previously worked with infants and toddlers. In our program we do not put much stock in diagnosis until kids are older. We very often define kids as having a "developmental delay" even if they appear to be on the spectrum. In my state DD label lasts until a child is 5, and at that time we reevaluate to determine the eligibility area. We feel that it is an appropriate label for kids that are still growing and changing and it does allow them to receive the necessary services. You will be amazed to see the changes that will occur in your child over time. If you have any specific questions, feel free to send me a PM.

[Nik's Mom]

Boy, can I relate to the op! I am the Mom of 2 autistic sons (5 and 8 years old). I will never forget the first time someone suggested autism. I cried hysterically at work. I still remember when one of my co-workers heard me crying and she went flying into my office. Keep in mind that she has terrible arthritis in both knees and can barely walk. She sat ther and held me until I calmed down.

Both of my sons have learned to speak through the help of speech therapy. They receive O.T. to help with sensory issues. I have cried buckets through our journey. But the good news is that you will come to terms with what ever your child is eventually diagnosed with. There will be times when you will cry buckets again, maybe years later. It seems to come in waves. Just try to hang in there. Work on getting a diagnosis first, then you can work on accepting it.

I know this is so hard for you. Just know that there are so many of us out there going through the same thing. You are not alone!:grouphug:

[Val]

Tweedlemom, you beat me to it....Welcome to Holland kinda sums all of this up. I am the mother of 4 kids- ages 10 to 20. I am a research behavioral neuroscientist and should "know" about stuff- but I was completely unprepared to deal with my youngest DD10, who is 'hearing impaired', or hard of hearing, as we prefer to say!

First- you are normal. ANY mom feels overwhelmed and has so many fears about her ability to raise her child. A mom of a kid with special needs- and I mean special needs, not a label- has even more fears! Thank you for feeling comfortable enough with this board and showing the bravery needed to tell us how you were feeling. We all could have written these very words about our feelings of incompetency and fear.

What is the best way to cope? Find a support group for YOU! A list serve (there may be several out there for parents of children who have similar diagnoses to yours) or a local group can really be critical....share, get ideas, find comfort. I know that the listenup! listserve really helps me deal with my DD's hearing loss. It is so comforting to read about kids who are going on in school, their achievements, etc.....gives me hope for my child. And, I can empathize with the other mom's frustrations and setbacks, and then I know that if they can handle it, so can I. Second, don't be afraid to hope and dream....don't put limits on your kid. He may not make it to Italy, but Holland IS a great place! Great painters may have come from Italy, but I remember a few "good ones" were also Dutch! You get what you expect from your kids-so hope for greatness and wonder and it is bound to happen. Finally, learn to ignore all those "advice givers" (well, not us!)....everybody will tell you what you SHOULD be doing, but you are the one who knows your child and knows what your family can/can not do....learning to ignore is an artform- I guess we moms of special needs kids are the Rembrandts of ignoring! Finally, remember that you have a terrific, loving, kind child- the world, especially your world, would be a much worse place without him. His contributions to the world may be not what you expected- but just look at all he has taught you already! So much, and he's only little....think how wise you will be by the time he is 18.

God bless you, hugs, and remember that you are NOT alone. Many have travelled down this path, some are in the middle of the trip, and others like yourself are just beginning. But along this path you will find kind neighbors, helpful Samaritans and beauty and goodness. I actually am starting to enjoy Holland....it might, in some ways, even be prettier than Italy. Still wouldn't mind a side trip to Italy, just to say I have been there and done that. But, Holland is really growing on me....It is more unique, more cherished, and forces me to stop and smell the those proverbial flowers. Glad I made the trip afterall. Give that little one a great big hug from my family to yours....and my DD is signing "tell him I say I love you!"......see, he's impacted some one else already!

[carrie6466]

Karen,
I just have to say hang in there. You'll be able to do what you need to, when you need to.

I never thought DD would start to talk. I used to question the ped at every visit. She was about 3 1/2 when she finally started. She still has a lot of trouble with it, but she's going to be getting speech now. I just wish I had know that I could have done this with her much earlier. I thought they had to be in school already in order to have them get anything through the school district. I just found out this year that wasn't the case, which was when I and the preschool teacher requested evals be done.

It sounds like your son is getting what he needs and you are doing a great job of getting it all done for him! Hang in there, I think we all have days like that :)

[LindaBabe]

Tweedlemom, you beat me to it....Welcome to Holland kinda sums all of this up. I am the mother of 4 kids- ages 10 to 20. I am a research behavioral neuroscientist and should "know" about stuff- but I was completely unprepared to deal with my youngest DD10, who is 'hearing impaired', or hard of hearing, as we prefer to say!

First- you are normal. ANY mom feels overwhelmed and has so many fears about her ability to raise her child. A mom of a kid with special needs- and I mean special needs, not a label- has even more fears! Thank you for feeling comfortable enough with this board and showing the bravery needed to tell us how you were feeling. We all could have written these very words about our feelings of incompetency and fear.

What is the best way to cope? Find a support group for YOU! A list serve (there may be several out there for parents of children who have similar diagnoses to yours) or a local group can really be critical....share, get ideas, find comfort. I know that the listenup! listserve really helps me deal with my DD's hearing loss. It is so comforting to read about kids who are going on in school, their achievements, etc.....gives me hope for my child. And, I can empathize with the other mom's frustrations and setbacks, and then I know that if they can handle it, so can I. Second, don't be afraid to hope and dream....don't put limits on your kid. He may not make it to Italy, but Holland IS a great place! Great painters may have come from Italy, but I remember a few "good ones" were also Dutch! You get what you expect from your kids-so hope for greatness and wonder and it is bound to happen. Finally, learn to ignore all those "advice givers" (well, not us!)....everybody will tell you what you SHOULD be doing, but you are the one who knows your child and knows what your family can/can not do....learning to ignore is an artform- I guess we moms of special needs kids are the Rembrandts of ignoring! Finally, remember that you have a terrific, loving, kind child- the world, especially your world, would be a much worse place without him. His contributions to the world may be not what you expected- but just look at all he has taught you already! So much, and he's only little....think how wise you will be by the time he is 18.

God bless you, hugs, and remember that you are NOT alone. Many have travelled down this path, some are in the middle of the trip, and others like yourself are just beginning. But along this path you will find kind neighbors, helpful Samaritans and beauty and goodness. I actually am starting to enjoy Holland....it might, in some ways, even be prettier than Italy. Still wouldn't mind a side trip to Italy, just to say I have been there and done that. But, Holland is really growing on me....It is more unique, more cherished, and forces me to stop and smell the those proverbial flowers. Glad I made the trip afterall. Give that little one a great big hug from my family to yours....and my DD is signing "tell him I say I love you!"......see, he's impacted some one else already!

Val, THAT was a beautiful post. Thank you so much for writing it.

[Val]

LindaBabe....you all caught me on a GOOD day. We had my kids change to public school from parochial school this year- my DD10 with hearing loss was really struggling with out special ed services, my DS12 had a bad bully situation, and my DD16 had already decided to attend public high school. Was a hard decision.....skip ahead to this week.

My DD10 with hearing loss made the A honor roll. She has to work extra hard, but by accepting the spec ed services she is getting the help she needs to hear- and academic success comes with it! My DS12 is also doing well in school now- A/B honor roll. He just started physical therapy for an old arm injury (bad cut and break when he was 3) and the PT was optimistic that the injury won't cut into his "football career" (funny to hear that for a 12 year old- since when is Pop Warner a career, and no, he won't be going to Disney!)...

After reading the posts, I started to reflect on the people who work with my kids...my DD10's primary classroom teacher is one of the top 30 teachers in the state; her science teacher won an outstanding teacher grant; her school is a Blue Ribbon school and I can't say enough good things about her teacher-for-the-deaf, her speech therapist and the school psychologist. My DS's teachers are part of an award winning junior high team. My DD10 and DD16 (and my DD20's) orchestra teacher just won outstanding music teacher for the state. DD16 won regionals for the speech team, and has been recommended for trying out of nationals- all because of the influence of her outstanding speech and drama teacher....my DD 20 is exceling in her art major at school because of the great art teachers she had. I am SO blessed to have so many fine teachers in my children's lives. I am not sure how our little town cultivated such a fine public school teaching staff.

It was so hard to accept "help" and realize DD10 needed services. Now, I realize all the kind and loving teachers, therapists and doctors that are out there. Sure, we have seen some crappy ones (I HATE geneticists and some ENTs)...but we are so blessed. I think learning to accept help and learning that you can't do it all is the first step.....and then learning to accept comfort and small steps is the next. We must learn to like the flowers in Holland, even if they aren't the museums and landmarks we expected in Italy....when we learn to accept and not sweat the small stuff we learn to embrace life and life it like our child does- full of grace, with exhuberance and joy, and always knowing that our tomorrow will be fulfilling, even if we don't know what will fill it!

Now, catch me on a bad day and I am the WORST pessimist......Eeyore would be an eternal optimist next to me. But, as the principal at my DD10's school says at the end of announcements each day,"Today is a GREAT day to be a Timberwolf, because at Fox Creek Elementary, each day is the start of the rest of our lives. Carpe Diem!"...oh, and Mr. R is one heck of a principal, too!

We all will survive, and our kids will too- in SPITE of what we do to them! Best of all, our little ones who struggle against adversities will teach US how to live.....maybe that is why they were sent to us- we needed a lesson in living life to the fullest.

[brettgirl]

Amen Val!!!!

[khomer504]

Hi everyone! I posted this thread many months ago, and have been on quite the journey since then. My little guy was diagnosed with Autism just a couple weeks ago. By the time we got to the diagnostic appointment it wasn't a surprise, we knew what we were expecting.

I really just wanted to come back here and thank everyone. This was the first place I posted about anything having to do with my little guys problems, and you all really inspired me to look further. Since then we have joined several local organizations, and are on our way to having a strong support network. Andy is still almost completely non-verbal, but doing great with PECs.

Also, I can't tell you how many times I've read "Welcome to Holland" since it was first posted here, and I still cry every single time. Heck, I don't even have to read it, just thinking about it right now tears me up. That poem alone has meant the world to me these last several months.

Now, we're 1 month away from our first big family trip to Disney, and I can't wait to see how it works out for us. Thanks again to everyone... sorry I was MIA for so long.

Karen

[LuvsTinker]

I'm glad you've found the support you'll need to help you through this big puzzle.

Best wishes for a very happy WDW trip :)

[tweedlemom]

So glad you checked back in! Glad the poem has been helpful. You will be amazed at how well your child responds to WDW. Enjoy the trip and make some wonderful memories together!

[MandM-Mom]

I had read this thread months back and was glad to see the update, believe me I have had those moments too:) And I am sure I will have more of them:) Have fun planning your trip, I am sure it will be magical.