New here...Frustrated Mamma

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Hi guys! I searched for something like this online and here I am...Anyways, I kinda just need to vent and let someone know how sad and frustrated I am. My son, London, thrived early on and seemed completely "normal" until about age 2 1/2. He started lining up toys obsessively. He was very bright and started reading at age 3, very verbal and everyone remarked about how advanced he seemed. Since then, he has become obsessed with topics for months at a time, has a terrible time at school with about ten notes home each day (he is in kindergarten) and stims by shaking something almost constantly. He also now has frequent meltdowns and does not really show empathy or affection. After three doctor visits telling me that he would grow out of this, he has finally been to a behavioral ped, who says that he displays most of the ASD characteristics but that he is still too social to be fully diagnosed. He is currently diagnosed with ADD and SID. I know in my heart that he has aperger's. I am now pregnant and living on a very low income but feel I cannot return to work with all of London's appointments and the new baby hanging over my head. It just feels like too much to bear most days and I try to stay busy but just find myself crying. I feel alone and selfish for being so depressed. I worry that my new baby will grow up and have these same issues. Is this hereditary? How much more will my son regress? I feel that there is very little hope left and am just so drained. I have thought about trying a gluten free diet for him...Any suggestions? Thanks to anyone who read this...I just need a friend and to feel that something good will happen soon.

My blessings are with you, I can't imagine what you are going through, I wish you the best of luck!

So sorry to read that you have so many stressors going on at the same time!

Ask the behavioral pediatrician to have his pragmatic speech assessed: a pragmatic speech deficit is common with kids on the spectrum, can really negatively impact their social skills, and can be a factor in meltdowns, etc. There are specific speech therapies to help address it.

Since autism is a developmental delay, it can be difficult to diagnose in younger, very verbal kids - depending on your doctor, you may get more help by figuring out his specific issues and asking for help for those separately. The behaviors you're describing are certainly an indicator of something, and I think you should trust your instincts. Do some research on autism; there are a lot of resources out there now - there's a list of books at the top of this forum that you should be able to find at your local library, and there's also an index of threads on various subjects.

Here's a couple of places to start: www.asdstuff.com

and http://www.autismspeaks.org/family-serv ... 00-day-kit

Take care of yourself! I don't know how things work in the UK, but in the US there are supports for parents of kids with disabilities like respite care and help getting them to and from appointments. Schools also might offer some diagnostic services and supports, depending on where you are. Good luck!

Hi Wavesofgrain! Welcome to Wrong Planet! Check out the different forums here. This site is interesting and helpful.

Your son does sound like he is on or near the spectrum of Autism disorders, and more likely near the Asperger's end of the spectrum. However, it is hard to diagnose any mental, or behavioral problem in very young children. Many normal children also act out at times, but some of what you describe does seem to fit the spectrum. Also, some of us are more capable socially, but unfortunately I am not one of them.

As to the cause of autism disorders, sometimes it is hereditary, as it can run in families. Sometimes it is trauma related from problems at birth or before, such as the birthing cord getting wrapped around the neck. Still other times it can be environmental, as there is some evidence that at least in some cases, exposure to environmental toxins while in the womb or shortly afterward, may have caused the problem. It may also be dietary, as some people have had some help in altering their diets. Do give the gluten free diet a try. While there is no cure for autism disorders, there are things that do help in lessening it's negative impact on one's life.

Do keep up with researching this, and with medical help. Also, don't stress too much about any non-violent stims your son engages in. It helps to burn off excess stress and energy, and can help block some of the input overload he may be suffering, by distracting, and comforting him. The sensitivities to stuff going on, whether too many people, too loud, too bright, uncomfortable skin sensations, etc., are generally caused by overloads, and mental/neurological processing issues. If the overload or processing problem gets out of hand, we sometimes have meltdowns. It's probably a good idea to put your son in a quiet room with low light when this happens, to reduce the excess input, and the overload, and calm him down. This is not a punishment, just a way to help him calm down.

Just remember, you are among friends here at WP, and we've all had to deal with similar stuff, either as a parent or as the child, and some of us as both, so we may be able to help with some of your problems.

I wish the best for you and your son.

Hi Wavesofgrain,
It sounds like you have a lot on your plate and I'm sorry you're feeling so overwhelmed. I have all the symptoms except the hand flapping and lack of empathy. Your son is young so I would think the empathy part might be difficult to assess just yet. I have extreme social handicap as well. It would be great if more research could be done to understand the variances because the picture is so different in some ways from person to person. I don't know what to offer except support and listening. I hope it isn't as bleak as you're feeling it is right now. I would think if your son is social there is more hope there rather than less.

I sent you a PM but how can this "doctor" know that your son is social? Has he seen him with other children or did he just have a little conversation with him in his office. Even my Autie is easier with adults that other kids. I had a stand in pedi doc for my older daughter one day and I told her that we were having her evaluated for Aspergers, because my youngest had Autism and my son, who was 6 at the time, was just diagnosed and I was diagnosed before him. She looked at me and said "How can you have Aspergers', you are too social?" Im standing here, not making eye contact with you btw, and Im explaining my daughters medical issues....this is being social? Wow, I guess you learn something new every day *sarcasm*!

Im going to assume because of your screen name you are in the US but I think another person posting thinks you are in the UK due to your sons name .

Also, I know there is a lot of hype about diets and what not but the truth is the whole gluten thing is just more people out to make money off those of us who are Autistic. If your son has Celiac disease or some other food allergy then avoid that food or for the Celiac, no gluten. Gluten free stuff tastes gross in my opinion. I am a vegi but thats a personal choice. If you are worried about food allergies, if he is having intestinal problems or something like that, it typically points to food allergies or rarely some disease.....this is not a part of Autism. Anyway as I was saying if you suspect a food allergy because of stomach pain or poo problems then remove one food at a time for a few weeks...start with the obvious ones like nuts, milk, or heavy grains. Just know that there is NO cure for autism because autism is not a disease it is just that your sons brain functions differently than what we would call a typical person. Also try not to worry too much while your pregnant, its not good for you and can affect your blood pressure which can cause premature birth. Try to eat well and dont worry about your new baby being autistic. If the baby is, there is nothing you can do about it but love and care for it the way you have London.

I think if you can get some services, some TEACCH therapy or a social group for London and some respite care then it would help you big time. If you are in the US which I suspect there is help but no one is going to hand it out....please read my PM that I sent to you.....and please try not to worry so much, Its not the end of the world even though it may feel like that right now....its really not!

Hi Wavesofgrain,
I'm also new here, even more new than you, so I hesitate to offer any advice. My daughter was recently dxd at 8, so I didn't have a name for her behavioural issues for the longest time. Many of the issues you describe, she had at 3 and 4, but they did get gradually better and she is now a lot more calm and able to cope. I don't know if it is the usual pattern but my experience is that it gets better as they get older and can express their feelings more. I'm raising her alone, so you have my full sympathy. It is no wonder you feel overwhelmed with a new baby on the way. Try to take one day at the time. Maybe the new baby will make things better, rather than worse. My daughter is wonderful with little ones and I think she would give anything to have a baby brother or sister!
GN

wow...sounds like you are going through a difficult time. I don't have anything to offer other than my thoughts are with you.

We had my son tested at 2 1/2 and they said he was not on the spectrum. We tested again midway through Kindergarten: the dev ped told us it was asynchronous development, but that since he was willing to show us a picture and share with us that he was relating to us, leaving me with the impression that it probably was not ASD... The school psych who observed him at school diagnosed him pretty quickly after reviewing parent and teacher interviews and observing him in the classroom and doing an IQ test (which showed a huge gap between PIQ and VIQ). the dev ped referred us to a psych, and the psych told us he was "clearly on the spectrum". Frustrating.

The problem is that my son is fascinated by the doctor's office and actually finds it quite calming because he likes looking at all the doctor equipment... he was having a good time when we saw the dev ped. It really took someone watching him in an environment (school) where he was pressed to accurately get a good picture of what was going on. Also, we learned later that some things we checked off as typical on the parent questionnaires were not typical at all: I never thought my son had a speech problem-- he is very verbal-- the problem is that he is very verbal about physical things, but not about his thoughts or communicating his needs-- I thought he was just independent when he would climb a cabinet to get a drink-- years later, I find that he does not usually ask for things he is thinking about because he thought I could read his mind. The parent questionnaires to me are too subjective and it is hard to know what exactly is ab/normal-- don't be afraid to ask questions and look at the video library on autism speaks website-- some things are very subtle and easy to explain away.

He had a horrible time in Kindergarten and the teacher would find him crying in the corner. His Kinder class was small (so he had no place to escape like he did in the huge preschool room) and the kids were constantly moving between centers-- and even normal 5 year olds do not have much concept of personal space and how loud they can be. He was stressed out and anxious all the time and had several strange behavioral issues (crying, panicky, threats, chewing everything, walking around aimlessly) in response to the anxiety. He was tested verbally, and he mastered all the skills he needed early in the year, but was unable to complete any graded work. We felt helpless, and began asking ourselves the same questions you are asking.

The good news is that 1st grade is going much better than we ever expected.

The school took care in matching him to the right 1st grade teacher, a class room with better lighting, and headphones for lunch and gym class since the noise bothers him. The classroom for 1st grade is naturally much more organized and quiet-- the kids have their own desks and want their own personal space. These things alone have been big for us (the 10 hours of therapy a week would not have gotton as far if he was still dealing with that Kinder classroom all day). I think there might be a few things you can request even without a diagnosis if you can figure out exactly what is bothering your son (although I did hold off on these things until after the school psych observed him to get the school to test him faster by saying that just trying things could do more harm than good since we did not know what was causing the problems).

You are right to keep pressing your doctor. Until that doctor goes to the classroom and sees with his own eyes what is happening when your son is amongst his PEERS, he cannot say whether or not he has social issues. I think a lot of us here could say that our kids act reasonable when they are around a few adults, but that things fall apart when they have to interact with peers. Your son obviously needs a little extra help regardless of what the diagnosis is.... you have teacher notes to support this--can you request referral to a psychologist with ASD experience, see another doctor, or get a school consult?

My son has come so far in one year that we cannot even believe the difference. We went from feeling helpless and discouraged and sad to being optimistic in just one year. It was a big relief to get a diagnosis and start therapy-- at least we had a plan, and other people to support us. As he gets older, his differences from his peers are becoming more visible, and we are working on lots of these things right now so he can react better-- But honestly, some of his differences are great things-- things that make him who he is-- things to build on-- things that may set him so far apart from the rest of the pack that he has a good chance at success later in life.

Keep your chin up. Demand testing and don't be afraid to ask questions. Love and enjoy your son. Then realize that you are being a great mom-- you are doing everything you can about this situation-- so take time to take care of yourself so you can take care of the new baby... and give yourself time to be excited about the new little one.

as for special diets, you hear so many anectdotal stories of huge improvements with things like diet change but if you ask many so-called experts, they say that studies are not conclusive... so are they saying these parents are nuts? no, they can't figure out why something could work for one child yet not another... you will find this by the way with lots of things... the OT says one thing, the ABA therapist says watch out that is not scientifically proven, my mom says its something else she read, etc...

i think that UC Davis is on the right track
http://www.ucdmc.ucdavis.edu/mindinstit ... roject.pdf
basically they think there are a variety of triggers for the same disorder... and this is why they don't come up with any conclusive ideas on anything... if diet allergies are contributing to only a certain percent of ASD cases then when they test the diet by trying it on everyone with ASD, not just those cases with diet allergies and ASD, then of course the results will not be conclusive even though it does help some kids... as for diet, i have mostly heard of cases where development was completely normal and then the child started losing skills at an eary age... this makes since because we start regular milk at age 1, crackers at about that time (it's been so long I can't even remember) and then if toxins build up it all the sudden appears shortly after... but as you will see there are so many factors that they suspect, who knows how many combinations of actual triggers there are that they do not know about

we are not on any diet except for we try to stay away from artificial dyes because i have noticed trouble focusing afterwards... we did not have any huge overnight change, he has just gradually been getting farther away from his peers socially every year but this was hard to notice until he was 5

I don't want to call anybody nuts, but it's very difficult to figure out from anecdotal evidence what variables there might be that produced a certain result. For instance, a recent study noted that most parents of children on the spectrum use a minimum of three different types of intervention simultaneously.

We've seen on this forum that a number of parents report that their children have co-morbid food intolerances and allergies, and addressing these issues via diet has made a huge improvement in their child's ability to cope, as it would for any child. Most of these children experience the typical symptoms of a food allergy: Hives, itching or eczema, wheezing, nasal congestion or trouble breathing, abdominal pain, diarrhea, nausea or vomiting.

Many people are so concerned about their children on the spectrum that they are willing try everything that might work, and who can blame them, really? The truth is that there are therapies out there that cause huge hardship to children and families and don't offer much benefit. A restrictive diet, especially with a child who may experience oral sensory issues, can be a burden on a family...and while there may be a payoff, I am of the opinion (and, granted, I'm no doctor) that it would be easier on everyone if parents started by checking for food allergy symptoms and acting accordingly.

momsparky-- personally, looking from my perspective at my child, I totally agree... I have a family member with gluten allergy and it is expensive, inconvenient, and not at all easy... I don't think I would ever try it unless my son had other symptoms or we weren't making considerable progress with other therapies... we tried a seizure diet involving eating lots of whipping cream, a ton of fat-- vegetables had to be smothered in full fat salad dressing, and nutritionist even told us that potatoes would not be allowed but if on occasion they were fried in fatty oil they should be okay-- everyone's dream diet, right?--lol, my son hated it--creamy textures made it not an option for us, the stress only made his symptoms worse

and yes, in cases where a diet change does "work", there would not be any way to tell if it was the diet or the other therapies they are using unless they stop the diet and look for changes... I do think it is interesting though that they are running a study trying to group ASD kids by symptoms/co-morbid conditions...