Hi all! New here.

Discussion in 'General Parenting' started by Autismkids, Jan 9, 2010.

  1. Autismkids

    Autismkids Member

    I just came across this site tonight, and am glad I found it, but not glad I need it!

    I am a single mom of 2 kiddos. My daughter is 8. She is autistic, has allergies and mild obstructive sleep apnea. I also have a little boy who is 5. His diagnoses starting around 2 years old, and he just keeps getting more. He has Pervasive Developmental Disorder (PDD)-not otherwise specified, ADHD combined type, ODD, some signs of CD, severe sensory integration dysfunction, reflux, asthma, allergies, rythmic movement disorder, night terrors, sleep fragmentation, and very mild obstructive sleep apnea. He is unmedicated except where medically necessary (asthma).

    We live in my father's basement, and my evil step-mother (ESM) isn't fond of all the noises children make, nor will her and my father accept that my kids are not typical. So I've had a really hard time doing much consistently with my son. Seriousy, why would I cause a tantrum by making him throw out his diaper in the morning, get a phone call, or have someone come down, kill the mood for the day, when I can do it myself? I am doing my best not to rock the boat, and am looking for other housing.

    I am 26. I have moderate obstructive sleep apnea treated with my only bed partner- my CPAP. I was misdiagnosed in school as emotionally disturbed. In the past couple of years I've had many psychologists and doctors say I'm asperger's, and I'm trying to find out where my Learning Disability (LD) label in school came from (I was ED, then we moved and IEP was changed to Learning Disability (LD) and I was declassified a few months later and left to suffer through the last 7 years of school).

    I look forward to "meeting" everyone here!
  2. Marguerite

    Marguerite Active Member

    Be careful with multiple diagnoses; often they can overlap and simply be facets of other things the child has got.

    For example, difficult child 3 has an overall diagnosis of high-functioning autism. His initial diagnosis was mild-moderate autism spectrum disorder plus ADHD. Now since then I've heard that ADHD is considered to possibly also be on the autism spectrum somewhere; i which case difficult child 3 doesn't have ADHD plus autism, he has ONE condition which is a composite, with facets of both.

    difficult child 3 also has hyperlexia - again, it seems to be a subset of high-functioning autism, overlapping to not have enough criteria for an autism diagnosis but close.

    Other facets of difficult child 3's condition - he has anxiety, Obsessive Compulsive Disorder (OCD), Sensory Integration Disorder (SID) and some ODD. Again, all of these are manifestations/consequences of the autism. Considering these to be separate labels can distract me from the main problem - the autism and exactly how it manifests in difficult child 3.

    Of course, these separate labels do help when we stop and think, "What kind of support do we need to put in place for difficult child 3?"

    Welcome on board here. It's not unusual for Pervasive Developmental Disorder (PDD) in its various forms to be found in other family members. It's even easier to recognise it with 20:20 hindsight. I know that "autism" wasn't mentioned in our family until after difficult child 3 was diagnosed. But as we look around the family (and back a couple of generations) we have been finding more and more cross-connections we had either forgotten about, or had never fully made the connection with.

    If you're Aspie, the label doesn't really matter now. difficult child 3 stresses about getting husband formally diagnosed, but as husband says - we're fairly sure, but what would be the point? He's working in a job where they love him and don't want him to leave, so there's nothing to be gained there. His working hypothesis is that at the very least, he has some Aspie traits. We keep these in consideration and they only really come up when he's acutely stressed and not coping. I then remind him that the problem is likely to be aggravated by the Aspie connection and that it's OK, there's no need for him to be as anxious as he is presenting. Between us we are a team.

    difficult child 1's Asperger's has changed a lot as he has grown and adapted to it. He is more independent than we ever thought he would be. His wife has anxiety issues but generally is the organiser in the family. However there are times when she needs a support, and then his innate strength kicks in like I never thought he would be capable of. He steps up to the plate, takes control and holds things together for her. In his case we know he's Aspie, but his wife took a long time to believe it because all she ever saw was a very intelligent, capable young man.

    There are natural qualities in someone with autism, ones which society values. Loyalty, honesty, a good work ethic - this is where Aspies and autistics end up, especially if they are supported as they develop.

    Looking at the list of problems you describe, I note the combination of allergies, asthma and obstructive sleep apnoea (which can be greatly aggravated by swelling of the nasal tissue due to allergies). It's not just the kids, it's you too. So it could be connected to the autism, or it could be a separate package the kids inherited from you (a highly atopic physiology) but whatever it is, have you tried diet? I don't mean weight loss diet, but an allergy diet.

    We tried this five years ago. We are fortunate to have a really good allergy clinic in Sydney, at Royal Prince Alfred Hospital. We went there because I knew the reputation of the place and the staff concerned. They were doing research into the link between autism and food sensitivity. They said that their research showed that about 30% of people with autism (kids mainly, because this research was via the pediatric unit) found that autism problems improved once the children were able to avoid certain foods. In other words, some naturally-occurring chemicals in the food (different chemicals for different people) were making things worse for them.

    This was not a cure for autism - merely a way to reduce some symptoms such as anxiety, Obsessive Compulsive Disorder (OCD) etc. The main natural chemicals to consider are glutens (as in wheat and oats); dairy; glutamates (MSG, a lot of Asian foods, Parmesan cheese); salicylates (just about any food with decent flavour, such as herbs, spices); amines (bananas are a classic example). To identify possible problem food groups we had to put difficult child 3 on an Elimination Diet, which was extreme and would NOT be approved as a maintenance diet by any dietician! difficult child 3 lost weight on it, but he was only to stay on tis diet until the problem symptoms subsided (in our case these were primarily nausea and vomiting). Any other symptoms improvement was also to be noted. For example, if we found anxiety improved, or the Obsessive Compulsive Disorder (OCD) improved. Unfortunately, we were unable to prove any problem improved in difficult child 3's case.
    The diet at its worst was very limited - lamb, chicken without the skin. Peeled potato, boiled. Dairy-free. Pears without the skin. Plain white sugar (so he could eat home-made honeycomb brittle or toffees made with white sugar). No artificial additives at all, no herbs/spices/flavourings. That was it. He could drink one brand of lemonade only (because all it had in it was sugar and water). husband called it a food-free diet.
    The aim is to get the individual stable on this diet with problem symptoms minimised, then slowly introduce food groups one at a time to see what changes there are. Every group that is reintroduced with no problems, greatly expands the diet possibilities.

    As I said, the research team found that only 30% showed any link between diet and symptom severity. That means 70% did not. But I'm glad we tried it.

    Another suggestion I can make, probably a more practical one under the current circumstances, is for you to read "The Explosive Child" by Ross Greene. If you go to the Early Childhood forum you will find a sticky that discusses how to adapt this book to younger children. A lot of us here have found this book to be really helpful especially in helping you cope with the ODD-type symptoms.

    Again, welcome to the site and I'm sure we can help you.

  3. Josie

    Josie Active Member

    I will also recommend a change in diet as something to try. My kids are not diagnosis'ed with autism, but both have improved on the gluten and casein free diet.

    My younger one had stomach problems that went away and my older one had behaviour/mood problems. Changing her diet did "cure" her, but again, she wasn't diagnosis'ed with autism, only ODD and depression.

    I thought I would stay on the diet while I was around them but eat whatever I wanted on my own. It made such a difference in my life that I have stuck with it. For me, it eliminated my anxiety (which I thought was just stress), irritability, fatigue, brain fog, auditory processing problems, sensory integration problems, even foot pain.

    We only do girlfriend/CF without eliminating all the other things Marg talked about. It does involve cooking a lot at home which results in less additives though. I feel like I eat better food, both in flavor and health, than I did before.
  4. susiestar

    susiestar Roll With It

    Welcome! I am glad to meet you and sorry you had to find us!

    It sounds like you ahve a lot on your plate. I am sure, if I were to explain all I have encountered and how I reacted to it, that I would have an aspie or autistic spectrum disorder diagnosis. I don't find it useful or helpful to seek that out, so I have never bothered with it. I did have many many decades where I looked at what same age peers were doing and could NOT figure out why they wanted to. I have NEVER understood why people are interested in most sports, esp those with balls. I just do not understand the attraction, even when I understand the game. I was always the parent with a book or magazine open during soccer practice and games. I tried to watch, but it was boring and annoying. I did cheer when others did, and always brought snacks, and even made pennants and hair ties for the kids' teams. (I married the son of a football coach who loves sports. Mostly because I love him and partly so my kids would have a prayer in this sports obsessed world we live in, LOL!).

    I would take the CD out of the equation for many years to come. Until the last year or two a person had to be 18 to be diagnosed. A conduct disorder diagnosis will not help you figure out appropriate treatment and it may close some doors as people will think your son is too far gone to be helped. This is NOT the case with as young as he is.

    Many of the separate diagnosis's are part of the autism diagnosis. The docs gave my son ADHD and Obsessive Compulsive Disorder (OCD) diagnosis's on top of the Aspergers. His Obsessive Compulsive Disorder (OCD) is way beyond what many Aspies experience or so I am told. Mostly these are added in to get insurance to pay out more money more readily. So they load all the separate diagnosis's on a kid and make it hard for a parent to figure out what to tackle first. Just in my opinion, of course.

    Is your son getting brushing therapy for the Sensory Integration Disorder (SID)? If not then he NEEDS this. You may need a private Occupational Therapist (OT) assessment to find this. School OTs test for what impacts education, not what impacts the rest of his life. You will be taught the brushing technique (uses a soft surgical scrub brush to brush the body in a certain pattern followed by very gentle joint compressions) and told how often to do it. Brushing is one of a very few therapies that are non-medication and create new pathways in the brain, actually create new ways for the brain to handle sensory input. It can take months to see any results, but the results will come and are worth the wait. At four my youngest could not sit through even 20 minutes of a church service. He wanted to - he loved church. He couldn't handle the music and the volume. After 6 months of brushing he was sitting up front and staying for the whole service. At a year he was going to Catholic Mass with my husband and the Episcopal Sunday School AND service at the church we attend. (LONG story about the 2 churches. My husband's choice basically.) He still does that and LOVES it. Never misses a week.

    Get a copy of The Out of Sync Child Has Fun. It is packed iwth activities that will provide teh sensory diet your child needs. It also is packed with ways to make those activities cheaply or for free. The activities your son hates are generally ones that are not good for what he needs. The ones he likes will help you figure out the sensory diet he needs.

    Do the same for your daughter. If you learn brushing from an Occupational Therapist (OT) for your son, then you can also do it on your daughter. Often they like to work with kids under 8 for Sensory Integration Disorder (SID). I used the brushing on thank you but also on my older 2. They each had marked improvement in school, felt better about themselves and were a LOT less "quirky". They find brushing very soothing.

    We recommend a book called The Explosive Child by Ross Greene. It is a technique that most of us have come to rely upon to discipline our children. If you go to the Early Childhood forum there is a sticky at the top of the list of threads that will help you adjust The Explosive Child to kids 5 and younger.

    I am glad to meet you here, and hope to get to know you better! Could you please go to the User CP button at the top of the page and make a signature like you see at the bottom of my post? No real first names, no last names or dates of birth, for safety's sake, please. The signature helps us keep your details straight so we don't suggest you do something that would not help your children. We get befuzzled sometimes, LOL.
  5. Autismkids

    Autismkids Member

    Thanks for the welcome!

    I didn't go into our entire history, because that's a book. My little man was allergic to dairy- as in life threatening, epipen carrying. He recently passed an in office food challenge this past summer. We are generally dairy, gluten free (we get oats free of gluten cross contam) and **** free, but I don't go crazy. I have done strict elimination diets with each of them and the only connection ever made was with my daughter and stimming after tomatoes. She now tolerates, but only eats sauce and ketchup.

    His other atopic problem is geographic tongue, but since it doesn't cause him any pain or discomfort, it's nothing right now.

    I know that most (all?) of his dxs overlap. The sleep fragmentation is probably related to his ADHD, and the rythmic movement disorder is probably a stimulant.

    His developmental pediatrician and neurologist find it's better that he have a ton of labels so the school can't deny everything. So while it's a given that an autistic kiddo will have sensory issues, his separate diagnosis of Sensory Integration Disorder (SID) ensures that the school can't ignore it.

    The early signs of CD label helps ensure that his insurance continues whatever therapies we're doing.

    At school he's in a general ed class with a crappy, negative teacher, but has very minimal behavior issues (4 small incidents since school started in September). He gets 2 group speech per week, and 2 Occupational Therapist (OT), 1 group, and 1 individual. He also gets a social skills group once per week to work on frustration tolerance.

    At home- He goes to Occupational Therapist (OT) once per week, and we have basically a therapy apartment. We have a platform swing, sensory balls, loads of play doh and theraputty, couch cushions that double as a crash pad, scooter boards, and a balance board. My daughter loves to be brushed, but my son no longer tolerates it. That's one of his current Occupational Therapist (OT) goals.

    I just started a new reward system after a 2 week run of ABC charts. 90+% of his behavior is escape and sensory, so he's getting overly rewarded right now for simple tasks (like when he ran into his room yelling every curse he knew because he wasn't allowed to play the Wii yet, I gave him a marble for NOT slamming his door!).

    I will have to order The Explosive Child.