New here, need advice!

Discussion in 'General Parenting' started by Junniper65, Jul 9, 2007.

  1. Junniper65

    Junniper65 New Member

    First of all hello! I'm a 30 yr old single mom with two "difficult child"s (if I'm using that right :smile: ) and need some advice. My 8 yr old son was diagnosis'ed with autism at age 2.5, and has been in therapy (speech and occupational) since his diagnosis. He was also diagnosis'ed with Sensory Integration Disorder. He still has issues with that but it has dwindled down to just food issues. He has other health issues as well, including an allergy to milk (yes an actual allergy) BUT I do have him on the gluten-free, casein-free and also soy free diet. He has improved beyond anything I could have hoped for. He's currently entering 2nd grade with no SPED services and his only struggle is with social issues and those are dwindling as he gets older. I rode this fun roller coaster with him for the past 5.5 years. He's such an awesome kid. Now, you must think, "hey what the heck does she need advice on?" Well here it is.

    I also have a 6 year old daughter who at age 4 started receiving speech therapy, but I knew there was more to it. She had extreme difficulty in preschool with the structure, she often had outbursts, refused to do things most kids her age would love (like coloring and painting) and often wandered away from circle time with little explanation (even at ECFE meetings while I was there, I can remember the other parents being appalled. lol). I said way back then, I thought it was ADHD. They told me, "she's too young! you can't tell". I told them to wait, in K or 1st grade they'd be calling me. Well she just finished K and low and behold the phone call came. Now she had an awesome K teacher who had a well of patience that's huge. To back track a bit, during ECSE (due to speech therapy she ALMOST qualified for early childhood Special Education, but you need 2 significant issues for ESCE) so i battled and fought for her to be tested again. Yet again the only issue that showed on the nice neat tests was speech. I wrote letters, documented behavior and fought for her. I ended up with the whole SPED dept AND the principal in the meeting and I finally got them to add behavior goals to her speech IEP. To this day she is still working on those goals. Now as of a month ago she has the official diagnosis of ADHD (combined type) from a psychologist.

    A little snapshot of her is that she is a bright beautiful girl who struggles with her peers, can't seem to shut off her motor and can't understand what the big deal is! :smile: And I wouldn't trade her for the world. Her constant energy and joy of life is what kept me sane through the tunnels we crawled through with my son. I get overwhelmed by the sheer life she has running through her! The pediatrician whom I trust due to his immense help with my son, prescribed my daughter Adderal XR 5mg. I'm at such a loss.

    On one hand I want to help her in anyway I can. She really struggled through K (not academically, she had met all expectations by December) and I'm worried what 1st grade will bring. Another worry (well not so much worry as feeling hypocritical) is that my son was helped by "alternative" means and here I sit, ready to give my daughter medications. I've read about the Feingold diet and it disturbs me that you have to pay 60-70 bucks just to get the materials. That makes me skeptical of it. If it's truly that wonderful for these kind of kids, it should be free. When I did the gluten-free, casein-free diet the only thing I paid for was food.

    And now I'm rambling. I'm tired. And I'm due to give her her first pill in the morning! Help! Any advice is greatly appreciated!

    ** Also the ex is a recent ex so she is also dealing with that. And ex thinks he knows better than doctors. I just found out the last week he allowed son to eat fries with soy and gluten in them . On purpose. Just to "prove" something. I'm worried he'll pull this with my daughter. And we're currently in a custody battle. It's great.

     
  2. AllStressedOut

    AllStressedOut New Member

    I'm afraid I'm not as educated about this all as you are, but in all honesty, giving all my difficult children medications was a difficult decision. I didn't want them to be medicated just because their brother needed it. Then one day it hit me. What if they need to be medicated and I'm not medicating them because I'm afraid to? I think if you are willing to find other routes and they work, thats wonderful. But I also think if your daughter needs medications, its okay to give them to her. It is a hard decision to make and its great that you don't enter into it lightly.

    With my husband's ex, she never gave our oldest difficult child his medications. What we had to do is when he left on Friday for weekend visits, give him his Friday night time medications and then hope she'd give them to him Saturday. This of course never happened. But at least he only missed one day instead of two.

    Good luck with the custody battle. We're almost done with ours, just a few weeks left and about $30 K in the hole and then I will be able to adopt my difficult children.
     
  3. Kjs

    Kjs Guest

    Many more experienced wise board members will join to give you great advice.
    I can only offer personal experience. difficult child is very bright, I was blind to the fact he really did need help. It was suggested that he recieve spec. ed services, I refused. Only diagnosis I had was ODD. From what I read, there was no medication for it. I was determined not to give medication to my son.
    I fought this until he was in 5th grade. At this point the counselor(wonderful lady very good to / with difficult child) called me. difficult child was totally lost. Anxiety breakdown?? He asked to be hospitalized. This was a very stressful time at home also, I was a mess. We got him into a psychiatrist, started medication. It scared me to see difficult child so miserable, so lost. HE asked for help.
    He will be entering 8th grade in the fall. We struggle, but I can say the current medication has helped a great deal with his moods. Medication isn't for everyone, and what works with one maynot work with another.
     
  4. busywend

    busywend Well-Known Member Staff Member

    Welcome!

    It is my experience that while ADHD is diagnosis'd much more often these days - I still think it holds true most docs do not give the medication if they do not think it is truly necessary. If you trust your doctor and he thinks she needs it - then why hesitate?

    I will tell you my story. difficult child was diagnosis'd in 1st grade after having the worst teacher ever. I waited to try medications because I thought it was the teacher's problem and she just wanted an easy kid (my difficult child was always difficult to deal with, so I did feel for the teacher - even though she was not meant to be with little kids anymore).
    Anyway, her 2nd grade teacher was great! She also indicated the inability to sit still and constant interuptions to the class, the blurting out, disrespect at times (not much - more out of frustration at that age). So, I tried Ritalin. I got great reviews from teacher. For two years this worked great. Then she started to look like a zombie, she started to have a severe let down in the afternoons, and she just was not fun anymore - and that is how she worded it. So, I took her off it and refused to try anything else. I did not want to zombify my child.

    by the way - I has asked for an IEP during her early years because I knew she was smarter than her report card reflected. But, her grades were 'too good' to have an IEP. That is what I was told.

    Three more years of school without medications. Finally, in Jr. High after calls home every day, constant being in the VP office, having major social difficulties (were always there but became magnified), etc. I had to begin to think about medication again. We tried Concerta (a form of Ritalin, figuring since it worked once....) - no go! It made her hate me - her words again. Tried Staterra - she cried everyday all day. Tried Adderal XR (slow release) - BINGO! It worked! The phone calls from school just stopped. Suddenly. If she misses one day I get a phone call home. That is always my first question now - did she take her medications? (I do not always know as she lives part time at dad's house).

    So, now I wonder everyday if I had kept on a medication path since 2nd grade trying one until we found one that worked....would her jr high years have been sooooo bad? would her grades be better today? would she have more friends? and on and on. I do not dwell on it, because I can not change it. I am the best parent I know how to be at the time I am making decisions for her.

    I would never force or recommend anyone to give their child medications - but this is just my story. It is your job to learn and research in order to make the best decision you can for your difficult child. You are doing just that by finding this place!


    :warrior: You are a warrior mom!! You can find the right answer, or at least start on the right path - it will change through the years.
     
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I'd like to welcome you. There are many forms of autism, and some look like ADHD. 20% of all kids with autistic siblings have it too. Although you like your pediatrician, I'd take your daughter to a neuropsychologist. It is hard to diagnose the higher functioning autism (Aspergers/Pervasive Developmental Disorder (PDD)-not otherwise specified) and pediatrician. could easily miss it. My son was missed over and over again. NeuroPsychs do intensive testing, they don't just listen to symptoms and watch the kid for five minutes. My son was tested for twelve hours. I would want to have a complete evaluation before I "went there" with medications. My son was on every ADHD medication in existence and it only made him aggressive. I'm not saying that shse has Autism Spectrum Disorders (ASD), but it's always good to be safe rather than sorry. My son wasn't diagnosed correctly until age 11, and is doing great now that he has been and is getting the right interventions and supports from school. He does not need medications, although he was on ten of them due to wrong diagnosis!!!! Good luck!
     
  6. Josie

    Josie Active Member

    Hello and welcome!

    Both of my daughters are on the girlfriend/CF diet and one of them is soy-free. My older one has done so well on the diet, I wouldn't even call her a difficult child any more. Neither one of them was ever considered to be autistic but it has helped their behaviour.

    Have you tried the same diet with your younger daughter? My younger one used to look like she had ADHD but once she went on the diet, that went away. She is on the diet for stomach issues but it had a side benefit of helping her behaviour.

    If you're looking into the Feingold diet, you've probably already tried it but I thought I would ask.

    If you post on the Natural Treatmens forum, the moderator there knows a lot about the Feingold diet. She may be able to help you so you don't have to order from them.

     
  7. Marguerite

    Marguerite Active Member

    Good on you, MWM. We DO think alike!

    Welcome, Junniper. You already have a son with autism. High-functioning, by the sound of it. Snap - I got one too. It's great when you've worked out a system that helps him. Sorry to hear about the jerk of an ex - it is really annoying when family members undermine you like that. I've found the best ally of all, is the kid himself - difficult child 3 is hyperlexic as well, so he scrutinises labels and checks all the fine print for things he's not permitted to have.

    We tried diets. For a while, difficult child 3's teacher was insisting, loudly, that there was something physically wrong and what was wrong with US (and his doctors) that we couldn't see it? Any suggestion of the problem being anxiety was rubbished by her, so it took six months to rule everything else out. During that six months we had difficult child 3 on the diet, through the Allergy Clinic at Sydney's best hospital for it. And difficult child 3's symptoms of nausea and vomiting were still erratic, so it was really hard to challenge and get an accurate picture. But during his time on the strict diet, difficult child 3 hated it but was brilliant at compliance because he knew it was all aimed at helping him.

    When he was a lot younger, I also tried difficult child 1 on the diet. I tried the whole family, at the time, myself included. We found that difficult child 3 had a problem with caffeine and oranges but his medications would mask it all but a BIG caffeine dose. Now he can tolerate caffeine.

    The Feingold Diet - I always thought it was very simple, just exclude artificial colours, preservatives and artificial flavours. We do that anyway, as much as possible. The low allergy diet difficult child 3 was on went much further - it eliminated natural foods which included salicylates, amines and sulphates as well. We were given a couple of simple booklets with the information.

    Now, to the crux of your problem - you already have one child with autism. This greatly increases the chance of another child having some autistic traits. I do think she needs to be investigated for Asperger's Syndrome. The trouble is, the smarter the kid (and the longer you leave it) the harder it is to diagnose it. The kids adapt to the condition, find ways to cope (which may not be as good as they COULD do things, but it p[asses as adequate because they're bright). It's a weird condition, for those who don't understand it. And it IS a form of high-functioning autism. You generally don't get language delay with it.

    The bigger umbrella which covers autism, Asperger's and similar, is Pervasive Developmental Disorder (PDD) (Pervasive Developmental Disorder). Have a look at http://www.childbrain.com and look for their online Pervasive Developmental Disorder (PDD) test. It's not officially diagnostic, because only a doctor can diagnose it, but if you do the questionnaire you can print it out (whatever the result) and take the printout to her doctor, for an opinion. See what the doctor says. And see what you think, after you've done the questionnaire.

    Although she doesn't get an official diagnosis, we believe easy child 2/difficult child 2 should qualify as Asperger's. She masks it most of the time but in some areas it has become MORE obvious as she's got older. Same with difficult child 1 - in some areas he has simply failed to develop. He is trying to become more independent (as is she) but needs his hand held through some very simple things, such as buying his own medication from the pharmacy. Paying his bills. And he has to do his taxes this year - he's in a panic over it. easy child 2/difficult child 2 has been doing her own taxes for years but STILL needs help, still breaks down in fits of hysterics. Just getting her to go apply for a job she really wants, causes her an anxiety attack.

    What we've done to cope - we meet the kids where they are. That is our starting point. Then we move on from there. We encourage them to value themselves and their individuality. A fringe benefit of their condition - they are very, very smart. When dealing with their special interests, they can hold focus much better than most people. When they feel confident, they cope brilliantly. They are honest. Loyal. Law-abiding.

    Look up Tony Attwood, see what you can find. He is an expert on Asperger's, from a positive point of view.

    It may not be Asperger's, of course. But I'm laying bets on it.

    Marg
     
  8. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I know nothing about the diet but I can tell you that I have an ADHD success story using medication. He is now an adult who will be 23 tomorrow. He was on ritalin from age 4 to 14. This is the one who I call Jamie in my profile.

    Jamie is purely ADHD. He was never a behavior problem outside the impulsive issues that arise from not thinking through his actions. He stopped medications when he entered high school because his goal in life was to go into the United States Marine Corps and he knew he had to be medication free for 4 years prior to that time. He successfully completed his 4 year tour as a Military Policeman this past February. He received many commendations and awards during his time in service. He is now an Animal Control Officer in upper Virginia. He loves his job and has already received a promotion.

    He is expecting his first baby any day now.

    He is responsible and mature. He never calls us to bail him out of situations. He lives 5 hours from us and handles himself and his life completely on his own although he is always here for us in a nanosecond if I call him. He has turned out to be the most perfect son I could ask for.

    For just 23 years old, I think he is doing an amazing job and I give much of the credit to his time in the Marines.
     
  9. Junniper65

    Junniper65 New Member

    Thanks everyone! I suppose now that I'm awake I could do some more explaining. :smile:

    I have done a lot of reading, research on Asperger's because my son is so high-functioning, however, he had language regression so that threw that out. I've also read/researched my butt off about the link between ADHD and Autism. I'm under the impression the two are linked somehow. If anything I'm very observant of my daughter because of my son. :smile: I became something of an amateur occupational therapist, as I'm sure all of us here have. Now, I'm reading everything I can get my hands on about ADHD. It really feels like its the right diagnosis, however I will talk to her pediatrician about the possibility of Asperger's. She fits the criteria for ADHD almost to a tee, and for Asperger's not so much. I knew it was a possibility that she have AS, but she just doesn't seem to fit on that side of the fence. Know what I mean? But I will bring it up to the pediatrician. :smile:

    And also as a side effect of having a brother on this diet, for awhile she was on it, too. We really didn't notice a difference in her behavior. And she lost weight on the diet. Which isn't good since she's a peanut to begin with. And we've had her tested for food allergies at the same place my son is treated. Nothing. That's why I feel so torn. One who was helped by diet, and one who can't be. Which is sort of ironic, because I used to do a lot of parent panels and support groups and I would help the "new" parents and tell them, "It doesn't work for everyone... but it doesn't hurt to try!" ... And here I sit, with one it worked for, and one it doesn't. I'm really glad I found this place and I have a feeling it's going to help me keep my sanity.

    As for the ex, if he continues down the path of sabotage, I'm going to claim child endangerment. He's never had their interests first and I know divorce rates for marriages with difficult child's is higher, but if anything I just think it sheds light on your partner you may not see with so called "normal" kids. I realized how selfish he was after my son... I was pregnant with daughter, dealing with a nonverbal upset son, dragging him to appointment after appointment and dealing with the newness of the diet, trying to be "relaxed" for the baby in my tummy, and trying to get dinner on the table. I have no clue how I survived. :smile: His response: "Well someone needs to work". Still took me 5 years to leave. We were in therapy for years. Ok, just rambling again. It's just good to get it out.
     
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