New Here.

Discussion in 'General Parenting' started by Jamieh, Dec 22, 2012.

  1. Jamieh

    Jamieh New Member

    Hi. I'm Jamie. I have 2 boys ages 3 & 5. The 3yr old has Childhood Apraxia of Speech. He has a handful of sounds he uses to communicate. Some words. We use sign language with him and I understand his language. He just started a developmental preschool and seems to be doing awesome there. My 5yr old was diagnosed with Sensory Processing Disorder about 6 months ago. He was diagnosed with ADHD earlier this week. He has had a lot of problems in preschool. I held off from enrolling him in kindergarten this year. We have plans of sending him next fall. I feel very discouraged that both of my boys have issues that they struggle with on a daily basis. I am also very frustrated at times. We have to tell the 5yr old 100 times to do one thing and it usually doesn't get done. Then we have the 3yr old who cries until the point of puking when he can't get anyone to understand him. Some days are chaotic to say the least. I love my boys...they are my world. But right now at this moment I feel defeated and beaten down. I have a list of therapists to call after christmas to set up appts for E (5yr) to begin our 'treatment plan'. I am looking for support...and advice on anything. I'm new to all of this.

  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there. I'm sorry you are having these problems with your children. Who tested them?

    I actually think both should see a neuropsychologist. in my humble opinion they both sound like they are somewhere on the autism spectrum and you can't help them with conventional parenting or expect the same things of them that other parents do. I don't think therapists will do the trick, unless you are going to take them for seperate-from-neuropsychologist OTs or Sts, which are useful IF you also see a neuropsychologist. I also don't think it sounds like ADHD stuff. The fact that #3 is in a developmental preschool (my son was too) shows they are at least *thinking* of some sort of pervasive developmental disorder.

    Do NOT feel defeated. We all have your back. My own son used to throw holy fits of terror when I didn't understand his grunts and pointing or repeated words, and now he can speak and we have none of that (he had a lot of intervention and is grown up). I have a few questions for you that can help us.

    1/Did both boys like to cuddle with you when they were infants? Did they look straight at you? Do they have good eye contact with both family AND strangers?

    2/Did they reach all their physical milestones on time...walking, sitting, turning over, crawling, mimicking you?

    3/Do they play normally with toys or do they take them apart, ignore them or line them up or just use them in unconventional ways?

    4/Do they have any strange eccentricities, such as throat clearing, or tics, or eating non-food items, or making loud, nonsense noises or anything that you don't see other children doing? Do they rock or try to bang their heads?

    5/Do they relate to their same age peers or do they play more beside them...or do they get aggressive with them or steal their toys?

    6/Any sensitivities to change in routine, the taste or feel of certain material, foods or loud noise (outside of their own loud noise?).

    Others will come alone.
  3. Ktllc

    Ktllc New Member

    Welcome! I can SO relate with the challenges you are facing.
    V who is 5 was just diagnosis with Autism Spectrum Disorders (ASD), but our first diagnosis were sensory processing and a few others. But his alphabet soup really is the symptomes of Autism Spectrum Disorders (ASD).
    I also have to repeat things 100 times unless I take the time to use a language he understands. For us it means get his attention first, make him look at me, use simple language and make sure evrything else is as quiet as possible around. Of course, being in a quiet environment is optimum but not always realistic (I have 3 kids!).
    Having your 5 year old evaluated by a neuro-psychiatric might indeed be a good idea. Or if you think he might be on the spectrum, find a good Autism Spectrum Disorders (ASD) evaluator (we went through a university research center). If you're not sure, try to read on it and see if you recognize your son. Bear in mind that the symptoms can be very obvious but for some other kids it is subtle but still impairing (like V).
    I also have a 2 year old with expressive delay (she does not have apraxia, but a phonological disorder which can favor apraxia but in her case she can say all her vowels, the consonants are challenging). And she also have LOTS of tantrums, probably partly because of communication frustration. She is VERY smart and she knows what she wants but can't express herself in as many details as her thoughts...
    Try to organize yourself: you'll will be the one managing your children's treatment plan. Nobody else will care enough to do it for you. I sometimes feel it is a full time job (and yes, I already have job thank you) but it extremely important.
    Make a file for each child and classify ALL relevant information, tests, reports. I also have a ressource file: brochure, phone numbers of what is available in my area. You never know when you might need even though it is not relevant today.
    Not all therapists are made equal. So don't hesitate to ask questions, and stay critical. You know your children best.
    I understand what MWM says about getting a neuro-evaluation first.
    But in our case, it just did not happen this way. We had to have a collection of evaluation conducted by various specialists. Over the last 2 years I seeked therapy for V (speech, Occupational Therapist (OT), playtherapy, social group) and all of the therapies were in place BEFORE getting the Autism Spectrum Disorders (ASD) diagnosis. It might be a bit backwards but with long waiting list and other obstacle, that's how it went for us.
    Even if you don't have an umbrella diagnosis yet, you can still identify the lacking skills and work on them.
    For BOTH children, you can start making things as visual as possible. Use little pictos and make a visual schedule. Think of words that they might need and make a little picture word for it. It could compliment the sign language.
    We 2 use signs with Sweet Pea but sometimes she wants to say something and just does not know the sign. So at one point I had a big board full of picture words. One day, she started having a big tantrum, I ask her to show me the pictur word on her board. She picked up "hug" and the tantrum stopped!
    Now she invents her own signs when she can't comminicate with sounds/words.
    We are all here to support you. You can do it. Just as your kids, you will learn A LOT and things will get better. I promiss.
  4. buddy

    buddy New Member

    I thought of ktllc too when I read your post, so glad she shared because I bet you two can relate a lot to eachother. I second all she said, and MWM too.

    So often short evaluations of our kids when they are young end up with the adhd "plus" kinds of diagnoses. Usually sensory integration, anxiety, ODD types of 'pluses'. For some kids there ends up being a host of other symptom types of diagnoses like these including auditory processing disorders, or motor planning or execution issues, and many others.

    For me (using my mom hat) I always felt both private and school therapies were good. Each had a focus and the more the merrier in my humble opinion. As an Speech Language Pathologist (SLP) I always encouraged that if parents were game. Some therapists felt there was no need, heck, they got therapy at school....those therapists were generally not parents, smile.

    Your kids are so blessed that you realized that you needed extra help while they are so young. They will probably do very well, but the road is so challenging and I dont know about how it is going for you but even with my obviously brain injured and autistic son people would make comments like "all kids do that" and I about wanted to kick them, haha. The difference as we all know here is the frequency, intensity, and the fact that typical parenting techniques just do not tend to work very well.

    You are among peers here. Even those of us with older kids now get it....sad to say but you don't forget! We still can relate!!
  5. Jamieh

    Jamieh New Member

    Thanks so much for the encouraging words. It seems overwhelming at the moment. I really feel that my oldest has Asperger's. He shows a lot of signs of it. But I know that a lot of symptoms of Asperger's are also signs of ADHD. I'll answer the questions for both boys.

    1/Did both boys like to cuddle with you when they were infants? Did they look straight at you? Do they have good eye contact with both family AND strangers?

    E- He cuddled a little. Always looked at us and made pretty well contact with- eyes. I don't remember about strangers tho. Now he has a hard time making eye contact when he is talking. He looks up and around and he will pace back and forth or walk in circles while he talks. He also walks on his tip toes when talking about something that excites him. He sees an Occupational Therapist (OT) for his sensory issues. He has a lot of them.

    Z- He has always been a cuddler. He still sleeps with me ;) He looks straight at me and has always made eye contact. He is very shy around stangers and hides behind me when someone he doesn't know speaks to him. His biggest issue is speech. He tested well out of his age bracket on the developmental testing that was done by the school. The only reason he got into the dev. preschool is because is considered language impaired. He gets speech 2 days a week at school (group) and right now because of the expense we can only afford 1 day of private ST. But in Jan we are going to try and start 2 days of private.

    2/Did they reach all their physical milestones on time...walking, sitting, turning over, crawling, mimicking you? They both met all on time.

    3/Do they play normally with toys or do they take them apart, ignore them or line them up or just use them in unconventional ways?
    E- Lines toys up in rows. Freaks out if someone messes them up.
    Z- takes stuff apart and will take toys and put in bags and carry around with- him all day. I call him my little hoarder. We have so many bags of junk in this house that he has stuffed. Its crazy the stuff I find in them.

    4/Do they have any strange eccentricities, such as throat clearing, or tics, or eating non-food items, or making loud, nonsense noises or anything that you don't see other children doing? Do they rock or try to bang their heads?
    E- Makes obnoxious noises a lot. Like while watching tv he will just start chirping really a really annoying bird. lol He has a wide variety of noises he makes. He also does this twisting thing with- his hand. In the bed he twists his pillow case until he falls asleep. He has done this since he was an infant. *he also co-slept with me*

    Z- does none of that.

    5/Do they relate to their same age peers or do they play more beside them...or do they get aggressive with them or steal their toys?
    E- has a hard time with other kids. He gets very upset when other kids don't play by his rules. He tries to have friendships but he gets so frustrated with other kids. He does much better with older kids or adults.
    Z- He is getting better about playing with other kids. He even attempts to talk to them some now.

    6/Any sensitivities to change in routine, the taste or feel of certain material, foods or loud noise (outside of their own loud noise?).

    E- changes are hard...very very hard for him to accept. we have to prepare him for everything. Every day we have to give him 5-10 min warnings before we leave, bath, bedtime. He cannot handle loud noises. He freaks out. We learned the hard way that a monster truck show was not the best idea for him. He also gets obsessed with stuff. He has been obsessed with green since he was tiny. he knew his colors before he was 1. He could say them all. And he would always pick up green everything. And now everything HAS to be green. He freaks out if its not. He wears green every single day. He also gets obsessed with certain toys. We went thru Thomas the Train. We had to have every single one. Then he went to Power rangers...that lasted for about 4 months. Then Monster trucks. Now its GI Joes.

    I know I added some stuff in there. Z doesn't have as many issues as E. His is mostly just his speech. Neither of my boys are aggressive. E just has really really horrific meltdowns if something doesn't go according to his plan or if we change something on him. I feel like I am constantly having to assess every activity we plan to do and ask myself 'can E handle this?' We stay home a lot and skip a lot of get together because its just now worth the stress it causes.

  6. InsaneCdn

    InsaneCdn Well-Known Member

    Can I joun the chorus?
    You're either dealing with ADHD and a lot of "pluses", or... something spectrumish (Aspie, Autism Spectrum Disorders (ASD), Pervasive Developmental Disorder (PDD)-not otherwise specified, something like that).

    Have you seen the book "The Explosive Child"? (Ross Greene). Some of us have found it helps in various ways - it's definitely a different perspective on parenting our "different" kids.
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'd go with the neuropsychologist on both boys.

    The lining up of toys is classic autistic spectrum. So is making weird, annoying sounds. Even Z sounds a bit spectrumish. Have you ever checked his hearing?
  8. Jamieh

    Jamieh New Member

    Z has had his hearing checked. He failed the first screening but we went on for the secondary testing and he passed in both ears on it. He hears well and understands everything. He actually follows directions much better than E. Both of my boys are pretty social but E really lacks the ability to control his emotions. The smallest stuff upsets him. His preschool teacher told me she has to completely remove him from the room for him to calm down. Which is what I have to do at home or if we are out in public. I usually try to pull him off to the side where its not too crowded or busy and talk calmly to him. It takes a little while but he usually calms down after about 15 or 20 min. Depending on what upset him. I feel so discouraged at times because I have distanced myself from friends who's kids don't have issues. They don't seem to understand at all.
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Autistic kids can be social. They just don't know how to be appropriate so they annoy other kids or else other kids just don't gravitate toward them...often this doesn't show clearly until they are older. My son was very active so other kids enjoyed running around with him when he was little. As he hit third grade or so, when relationships are deeper than just running on the playground and making silly faces, he stopped having friends. He didn't know how to enter their world appropriately. He is nineteen now and much happier with who he is, but he will never be that comfortable with new people or even most people. Since he has a limited few obsessive interests (which is another symptom of Autism Spectrum Disorders (ASD)) he tends to pick others who share them.

    It is common for Autism Spectrum Disorders (ASD) kids to be wrongly diagnosed. My son did not get the right diagnosis until he was 11.
  10. Ktllc

    Ktllc New Member

    Gosh! We should meet in real life. It seems like we are living VERY similar lives. And yes, kids on the Spectrum can be very social but they don't always understand all the implied rules. One day, V told me: "I want to play with the other kids but they don't tell me how".
    2 years ago my life was a total chaos, but thanks to this board, slowly we were able to do things differently and regain some normalcy.
    You won't be able to work on every single issues all at once, but you can pick one and ask for specific advise. Try to implement it, adjust it according to reaction and parsist a bit before you can judge of its results.
    V went through a "blue phase". He drove me crazy!!! I one day decided it was not worth the fight and slowly it disapeared. Some issues are not worth the battle and actually, trying to "fix" them will only make it worse.
    It takes a lot of patience raising kids like ours, and believe me I'm still learning to be more patient!
    Last night, V was taping on my arm "Mom, Mom, Mom," on and on. I paused and reminded him to wait until I'm done talking with Dad. He kept going but ignored him until I was done (you know the Big Bang theory, Sheldon keeps on knocking at Penny's door until she opens it? same thing here). Then I ask him what he wants to say. He goes "I'm full, I can't finish my pizza".
    ARGH!!! You had to interrupt us for THAT???? Sure, ultimately it is just a small little quirk, but it can be SO annoying....
    Has your oldest been checked for Auditory Processing Disorders (APD)? Auditory Processing Issues. It is hard to find an Auditory Processing Disorders (APD) audiologist when the child is only 5, but it would be worth checking into.
    It comes with the Autism Spectrum Disorders (ASD) in V's case, but he has sensory processing, auditory processing and visual processing issues. The sensory is pretty much under control right now thanks to Occupational Therapist (OT), he will get a personal FM system on Wednesday and has speech in order to help with Auditory Processing Disorders (APD). His Occupational Therapist (OT) made some new visual processing goals. We might look into visual therapy soon (behavioral optometrist).
    I know how overwhelming it all is. But the only way to regain some peace and control is by tackeling the issues, slowly but with gentle persistance.
    As far as what others think... no word of wisdom here. They just won't understand because they never had to deal with it. One day. V had the most violent public tantrum. All I said to people is that he has developmental issues and we are working on it. In this specific case, the gentleman complimented me on how I handled it. And some other times, Sweet Pea is tantruming while shopping and I have to keep my chin up all the while everybody stares or worse, try to get involved. Usually it backfires on them LOL Sweet Pea only screams louder.
    I gotta go now, hang in there.
  11. TeDo

    TeDo Guest

    Welcome to our little corner of the world. Glad you found us. Your two boys sound a LOT like my two boys. difficult child 1 was diagnosed ADHD at age 3. ODD was added at age 8 (when things started going WAY down hill). It was all changed to Asperger's at age 13 after two years of SEVERE problems at school. As the work got harder, his understanding of it got worse causing his anxiety to skyrocket which made him do whatever he could to avoid/escape the whole thing. Our school staff was less than understanding and actually provoked him until he did something "suspendable".

    Anyway, my kids are older but both your little guys could easily be younger versions of mine (difficult child 1 & E; difficult child 2 & Z). I wish I had gotten a thorough evaluation when they were younger. It is a LOT harder to convince espcially school personnel to accept a diagnosis made "so late in life" (their words since "Autism Spectrum Disorders (ASD) is obvious when they are little"). We started with a highly recommended PhD level psychologist to do an evaluation. I thought she was right on with difficult child 2 but it didn't seem to fit 100% for difficult child 1 so I had him evaluated by a neuropsychologist. That's where I got many answers. I do have to add that the most valuable resource we found was a VERY good Occupational Therapist with lots of experience with kids on the spectrum. I asked her to do a full-range evaluation (the school's was only cursory). The things she found that were interfering with school was AMAZING. I went to the school with the info but "that's not what our testing showed".

    Please look into an Occupational Therapist (OT) evaluation for E with someone that is VERY experienced with kids on the spectrum (even if that's not the official diagnosis yet). I also agree that a neuropsychologist evaluation would be a good route to go. I would also pursue an IEP for E before he starts kindergarten. That way, a lot will already be documented and he will be able to get services the day he walks in the door.

    I know I kind of rambled. I have a lot going through my head right now so please forgive me. I just wanted to let you know that I, too, see both of my kids in what you've described so far about yours. Stick around. This is an AWESOME place with amazing support and very experienced advice from people that really do know what they're talking about. At times, they will even be your sanity and voice of logic.

  12. Jamieh

    Jamieh New Member

    My life is pretty chaotic right now. I just started going back to school too. So in between running the boys to school and therapy I'm doing online classes and homework. I really do believe that E has Asperger's. When he goes to this new Occupational Therapist (OT) I am going to ask about it. Also we are taking him to a child counselor. Any suggestions for how to help with discipline? I feel like nothing works with E. And getting him to do anything is impossible unless its his idea. I can tell him to pick up toys and it always ends in a tantrum and him losing privilages or being sent to his room. Also another thing he does when he is upset is he says some really really horrible things. We don't curse so its nothing like that but he's said in the past 'I don't want to be alive anymore.' and 'I want a new family!'. Its awful because we have no idea where he gets this? He is such a loved little boy and most of the time very loving and pleasant. But when 1 thing goes wrong he explodes. Its so hard to deal with. Especially in public or around family. I hope you all had a merry christmas :) E is obsessed with frogs. He got a tree frog for Christmas and we already have 2 fire bellied toads. So he was one excited boy :)
  13. InsaneCdn

    InsaneCdn Well-Known Member

    If you think he's an Aspie... then he needs a comprehensive evaluation by someone who really understands Aspies.
    Regular therapists don't help.
    Occupational Therapist (OT) can help with a LOT of the "related stuff" - coordination, sensory integration, etc. But Occupational Therapist (OT) will not diagnosis Aspergers.

    Hint: Punishment doesn't seem to work with Aspies - rewards, sometimes, but not the stuff a therapist will tell you to use (like sticker-charts and defered rewards) - it needs to be relevant and instant.

    Have you seen the book "The Explosive Child" by Ross Greene? It's a different approach to our "differently-wired" kids... interestingly, it also works for neuro-typical kids! It might give you some ideas of things to try.
  14. TeDo

    TeDo Guest

    For me, the biggest thing was timing and setting a routine. Countdowns work for us. So do natural breaks or a specific time of day. In our house, we have a "everything in it's place before bedtime" rule and our bedtime was ALWAYS at the same time. Things like dirty dishes, in the sink the minute you're done and before you can leave the kitchen. Bath/shower is always at bedtime on specific nights. The more routine the better. The worst thing for my boys is to make "random" requests when they are in the middle of doing something else and expect immediate compliance.

    Pay attention to what he's doing when you make the request. Set a routine with a picture schedule so he'll know what to expect when. Their worst enemies are unpredictability and immediate change of mindset.

    As for discipline, the punishment has to fit the crime. You make a mess, you clean it up (once you're calmed down), etc. Timeouts mean nothing to my kids so it became more of a "go to your room until you can talk to me without yelling" or "go to your room so I know you won't break any of my things" or whatever is your biggest concern with a specific requirement for them to come out. Now, when difficult child 1 needs to calm down, he goes up to his room until he's "fine" again. I also learned to ignore the words that came at me in the heat of the moment. I knew they didn't mean them and would never have said them if they had been in "their right mind". Also, they apologized for saying them once they calmed down.

    All of this took some doing and The Explosive Child methods, while not always working for us, gave ME a whole new way to find out how difficult child 1 thought. That alone was over half the battle. Now, I can usually see where the problem stemmed from or can approach things in such a way that meltdowns can be avoided more.
  15. Jamieh

    Jamieh New Member

    Thanks :) I think I need to get that book and read it. I have read the scattered but smart book and some others on Sensory Integration Disorder. ANd they have really helped me and my hubs understand why E does a lot of the things he does. And it really helped us be more patient and understanding once we knew that it was something that was harder for him to control.
  16. TeDo

    TeDo Guest

    For me, doing Dr Greene's method made me put my preconceived ideas about the behavior on the shelf and actually LISTEN to difficult child 1 explain the "why" of the way he was acting. THAT is what opened my eyes and I realized that his thinking was WAY different than other neurotypical people. Until I started seeing things from his point of view AND worked collaboratively with him (teaching rather than punishing), we were all going downhill fast.

    I hope you are able to get to the same place I had to go. It was more about ME changing MY perceptions and assumptions and expectations and how I handled the situations.
  17. Jamieh

    Jamieh New Member

    Yeah we are learning fast to let go of the 'typical discipline methods.' They just don't work. I get aggravated when other ppl try to calm him down because it just makes him 100x worse. Or when they start trying to 'parent' him. My sister in law is the worst for it. I have actually had to tell her that he is my child and she needs to back off. I always have to pull him away from whatever situation and just calmly explain to him why he can't do what he's doing and let him know WHY rather than just 'NO you CANNOT do that!' Which is what family tends to say to him. We have tried telling our family (on hubs side) that he has to be approached differently but they don't listen.