Question for Auntie about responding to their name (LONG)

Micelle78 · November 2013

I know I have talked to you about my DS. One thing that I caught myself unable to answer was a question MIL asked me yesterday when we came and trick or treated.

So we (DH and I) have not been overly vocal about DS's stuff with more than a very tight circle of people. At first it was out of the stages of grief and later it was mostly because I did not feel my husband's family would "get it" and think I was full of BS or just say I was an overly concerned first time mom. I know that between his expressive-receptive delay, sensory issues, very restricted diet (getting OT treatment for this) and farsided-ness our "alphabet soup" of things continues to grow and I need time myself to process it, seek out therapists, and work on a way to address it. Anyway, my MIL said yesterday "You know he doesn't respond to his name. Why does he not respond to his name? You can ask him other things and he will answer you. Its like he is ignoring us, like I don't know..... Does your SLP have a way to get his attention and how are we supposed to get him to respond to us? Aren't you concerned?"

Of course I am concerned!! You know what other things I would like him to respond to? Are you ok? How are you feeling? What is your name? (recently answered this and refers to himself in 3rd person YAY!) What are you doing? He continues to have trouble with the classic WH- type questions. I know this is a typical symptom of a receptive delay.

So I tell her "When I asked the SLP recently, she said he may respond to what are you doing? sometime between 3.5-4 years old. I am sure that is right around that time too"

Her response "Well he is almost 3.5 now!"

I did not know what else to say. She tries to understand me but its like she is 6 months behind in denial. She asked if I thought the name avoidance was a sensory issue. Apparently she believes the sensory piece now. All that comes to my mind is when I told her last Christmas he would only eat a certain brand of mac and cheese and she proceeded to tell me that if he was hungry he would eat it. This is even after I told her how he refused any liquids for 24 hours because I had put milk in his sippy and he only likes water. He did not trust me after that and after 24 hours I forced water in his mouth

So my question after that long back story is, what is a good answer to her question. He asks for me a lot. Ok constantly asks for me. He will say "mom...mommy...mom....MOM" until I answer him and he smiles when I answer him back and will proceed to tell me something however trivial. So its not that he doesn't want to initiate conversation. He will just appear deaf to his name--especially when its not me. Although he acts that way to me too. I figure its a sensory piece myself since he is a chatter box despite being speech delayed and his speech requires eye contact on my part or he will get right in front of me to make sure I am listening LOL

TIA Auntie

kcisthebombdotcom · November 2013

Have you tried having them physically touch him? That seems to help break DDs hyperfocus. Sometimes if its really bad I will have to kneel down and physically get in front of her face but a lot of the times the hand on the shoulder does the trick.

Micelle78 · November 2013

Thanks Auntie, yes I have shared things with her as we have found out, but she questions me seeing things she doesn't see all the time. The latest was telling me even after he got glasses that she could not believe he was needing them. He actually got his eyes tested twice since the first optometrist was not sure and wanted a second opinion of someone in the office that tests kids more often. I tried to explain far-sided to MIL and it didn't really work--denial I think, He CAN see little tiny print a few feet away and we have all seen it since he likes to read numbers and words off of things-- that's how farsided works.

I do respect your observation as to the grandma thing. She loves him a lot and I think that she probably is finally coming around to the idea that no one knows his final prognosis. She is old school in a lot of ways and I think the fact my son is very engaging and makes good eye-contact and is super cuddly and sweet-- makes it hard for her to accept anything is wrong. He was the first grandchild too and is only now accompanied by my 7 month old DD. DH's two sisters show no sign of having kids. One is over 40 and not married and the other is 32 and working on her doctorate. She has a lot of expectations riding on him I think.

So back to my original question. He has trouble answering to us when he is doing a very interesting activity to him OR when there is more than about 4 people hanging out and talking. Case in point, my mom, his other grandma, my husband, his grandpa and his two great grandmas were all trying to get him talk about his fireman costume. They were all talking at him at once and he started off smiling and responding and then sort of just started ignoring them and taking his once great eye contact moments earlier and then turning away. He sometimes will just start to wander off and look at stuff in their house. If you get in front of him and try to make him engage with you he gets upset. I have even had a few times that he hid his head down and appeared to be hiding for a few minutes. That's why I was thinking it was a sensory thing. He doesn't really do this at home EXCEPT when there is a lot of people over and by a lot its usually after an hour or so of an event :birthday party, BBQ and there are like 15ish people.

He is normally a total ham and likes to have attention on himself.-- just not tons of people and in a unfamiliar place. We do not go to MILs house that often. She comes to my house a lot more.

How is APD different than receptive delay? I do have to be careful of the way I construct sentences and what verb choices I use and everything to maximize what he will understand. His newest verb is "DO IT" such as "mommy do it?" He is great at joint attention--a little too good, because he wants all of my attention like any 3 year old. He likes me to read him books, play puzzles, color etc. and its at these times as he laughs and smiles and makes oberservations about the objects we are reading he feels very NT. He will also hand me a piece to the puzzle and say "mommy do it?" so that I will engage in the fun too.

His language is really in the descriptive category. Like I will read and book- he looks up at me and says "The bear is laughing!" and he will be so proud that he knew that. (laughing is a new verb too). We are not in conversational speech really. He can not describe feelings or concepts of now and later or what he did earlier in the day. Although he does say things like "Go in mommy car and trick or treat"--referring to yesterday or "Go outside and slide?"-- we have a slide and he has his hand on the door knob ready to go.

I was also telling you that he appears hyperlexic and will ask what words are. He will spell them off of something and look at me and say"T-A-R-G-E-T ....That spells?" I will tell him and he smiles and repeats the word to himself outloud. He is constantly asking me what words say-- its his newest thing. he can even recite the spellings of some by memory right now. He freaked me out yesterday because he had a matching game that has two levels--one is pictures and one is words. The pictures are meant for a young child and they are supposed to be put in the categories of: air, land or sea animals. He has had it maybe a couple weeks and did not play it more than a few times. there are no words under the pics of the animals either. So its either pics or words.

He comes up to me and says"Play flashcards?" I start getting out the picture cards and he grabs the words and starts reading them-- here are the words octopus, lion, jellyfish, fish, bird, etc.... so I ask my husband who says well he is great at remembering, what's the big deal. I asked him if he read those words to him and my DH's reply was-- well maybe once I don't know. So anyway, add the ability to remember words to the already weird ability to name all the United States on any map and do puzzles in the 25-50 piece range between age 2.5-3.

Auntie thanks for your input. You are such a wealth of knowledge. I am so new to the game LOL... In keeping my marriage sane and healthy, my husband does not want an official diagnosis until he reaches kindie and as hard as it is, i respect him and need his support and want our marriage to last. My husband works just as hard as I do with his therapies and getting my son the help he needs. I don't even need to mention that a SN child puts strain on couples-- since everyone on this board I am sure can relate. In the meantime, he does get speech and OT and is in preschool and improving everyday.

Micelle78 · November 2013

Oh and one more thing to mention. If my DS sees some kids he doesn't know and now he will look at me and say"friends?" and sometimes even try to go over near them and start playing and laughing by them. he does not know how to actually initiate the play yet, but I see it as trying!

kcisthebombdotcom · November 2013

I think your dh means well but I think it's time to ignore his advice. 85% of a child's brain develops in the first five years of life. If you wait until kindie and there is something wrong thats more than just a delay you've missed a pretty important window where you can make some significant changes. I would educate him on that and let him know that an early diagnosis could help with his long term outcome. Sticking your head in the sand for another two years isn't going to help him.
My child sounds very similarly to yours--very sociable with adults one on one, hyperlexic, loves getting attention from myself and other familiar adults, great joint attention, uses language to communicate needs, affectionate, expresses some interest in peers, but has the receptive/expressive delays, sensory issues and a limited diet. She has her Eval for autism this week and her developmental pedi says there's a decent possibility she could receive a dx.

Micelle78 · November 2013

Auntie---

Yes he does use pronouns, but not with frequency that others might. He will say something like "Sister is crying. She is sad" or "Look a truck. Its green!" Most of the time he will say the person's name and not "he or she" so its hard to know if he really gets it or not.

Recently the past few months he has started saying "my" or "mommy's" when referring to someone owning something. Yesterday for instance, he said "my face" when he got food on it and "hold my hand mommy" although using "my" is rare. He also started referring to himself in the third person more but will say "I" too. The word "it" and "its" is used all the time.

I agree with your observations on the marriage thing too. My husband and I have known/dated/been married the past 16 years (we met at 18) and I agree that some people would let a SN situation be the reason and blame it on that. However, our arguments 90% of the time are because of disagreeing on how to parent DS. We are trying to talk about big stuff when not angry, and that is hard. We never expected (who does) that this would be our lives raising our son and I think he is still grieving to some degree. Its complicated by two other things too, we have a 7 month old that now needs us too and one other thing.

I remember when the biggest worry I had when I was pregnant was about our kids inheriting bipolar. Part of the response to my earlier post was because of this factor. My husband has worked really hard letting go of the feelings of others because of a stigma that comes with bipolar and the way his parents told him he was a "bad" kid growing up because they did not understand his out of control behavior. He was in trouble in school for fighting at a young age and saying stuff to others. He was diagnosed with several other things until he was a young teen and given a dx of bipolar. Since his dx he has been on several "cocktails" to get his mood/anxieties under control. he has done very well. Some of his meds make him very tired/thirsty/irratable and he tries so hard to be a good dad. Seeing out son struggle made him so sad and my DH does not want his own medical issues as well as DS's to burden me. there is a lot of feelings wrapped up in this as you can imagine. I do not share IRL much of this except to my family members. I am ok sharing on this forum annonymously.

Fast forward and he is seeing his son struggle and can not fathom a "label" when he is barely 3 years old (although we have been getting him services since 2). As my DH says, people do not have sympathy for bipolar. Its something to joke about and people judge you. He has often said he wishes he had ANYTHING else so that he wouldn't feel judged--but now I am straying from my original response.

He is afraid that a label isn't necessary because it could be changed a few times before he is out of schoo-- like it was for him. Now, he and I both realize that people will come up with a label even if you do not provide one.

KC 13 and Auntie, I appreciate your thoughtful responses and am soooo grateful this board exsists. What did pppl do before the internet? YIKES! I think that it is probably just a matter of time before we see a dev pedi. FWIW, I do understand the developmental window. I am a teacher and have taught all kinds of kids the past 10 years.

KC 13 I am eager to hear what your appt turns up. Please keep us posted

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