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.

 

[PrincessSuzanne]

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

 

[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.

 

[BeckyScott]

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. 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! 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.

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.

 

[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! 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]

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!

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 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

 

[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."