We are so worried about our little one....sorry long

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Hi everyone. My name is Anna and DH and I are the parents of Katie -5-1/2 years old. When Katie was 3 months old she had bacterial meningitis. She was hospitalized for 2 weeks- PICU for 1 of those weeks. She made a full recovery. This is kind of long but I feel you should know her whole history.

She has always had some temper tantrums but of course given her age we thought they were normal. Although I have an older daughter and her tanttums were never this bad. About a year ago she started to get violent during these tantrums. She would scratch herself until her arms bled. She would throw thing around. I would go lay down with her to try & calm her down and make sure she did not hurt herself. During these 'fits' she would have a completely glazed look on her face. I mean it was really odd- I never really mentioned that to anyone. I went to Child Find through the school district and had her checked out. I wanted to see if she had ADD or anything like that. Their outcome was that she is a very smart, clever, and precocious child but no ADD or anything like that.

Skip forward to now. She has been in daycare her whole life since a year old. A small Church daycare. She has had trouble fitting in so to speak. All her teachers say she is the cutest child until she does not get her way and then it is H-E- double hockey sticks! They really have tried to work with her. We had a child advocate come out to the daycare to observe the daycare, the teachers, and Katie. he went on several occasions unannounced but never saw her in action so to speak. i mean she would kick, hit, scratch, throw things, etc. DH and I would be called to either calm her down or bring her home. We had a meeting with the director and the child advocate and all agreed that she is really smart but lacks social skills. The director said you could see Katie wanting to play with a group of kids but not knowing how to. So she would walk up hit one of the kids, create a problem, break up the group, and in the end get what she wanted- one of the little girls would play with her outside the group setting. the director assured us that she would not refuse Katie because she cared and wanted to help her- blah blah blahToday was the final straw and they kicked her out.

Some other signs- the clothing thing. When I read that- I thought immediately that is my Katie. She has such a problem with what she wears. She cannot stand certain fabrics against her skin. Embroidery is a whole other issue. She wears a 100% white cotton cami under everything- even in the summer Vegas heat!! As soon as we get home, everything comes off except her panties. She loves to play with her legos. She will build something really intricate and then copy it 4 times over. She loves to paint and draw. She is peculiar about what she eats- but I think that is normal with a lot of 5 years olds LOL She definitely likes continuity and quiet- does not really like loud noises or a lot of commotion.

I am calling her ped tomorrow but wanted some input here as well. I don't want anyone to automatically treat her with drugs.

Any help or advice would be appreciated.
Thanks
Anna

Hello - sounds exactly like my son who is the same age as your daughter biting/food/clothing/socially etc etc. He was diagnosed with "mild Aspergers" (2 years ago because of the reasons you give now) although, when he kicks off (which happens less and less now because of the help he is gettting) it's really bad news! I am looking for a samoan rugby player to be our nanny because no-one else could look after him without getting a pasting! There isn't a more beautiful or more interesting child than my son though - even if I say it myself.

The pre-school were always calling us to get him early. Sometimes I just used to smile when it happened because I used to think to myself "who am I, a magician - you're better qualified and experienced than me with kids and if you don't know what to do then i've got no chance."

My son is now in his second year of having an aide with him whenever he is at school (every second of the day - and even then we still get called sometimes if the aide has left him briefly and he has got upset and bitten/hit someone). Because of him having a really good aide who follows a program with him, he is such a happy boy and he is able to learn and socialise. I am afraid, because of his aggression when he is confused etc. without this aide, he would not be at mainstream at all.

You might like to read the thread that I wrote a while ago about biting. Absolutely everything you say about your daughter sounds like my son. That may not necessarily mean that she has AS. The brain is such a complicated organ, only a very slight amount of damage to the frontal lobe can change a personality. And if she does have AS, that's totally cool so long as you know what works for her and what doesn't. She sounds like she is clever. I think she really needs you now to make sure that she gets the support she needs in certain areas and you should see her having less and less meltdowns as this support kicks in. I hope this happens for you because it will make your daughter so happy. She'll make really good progress quickly.

Can't wait to hear how it goes. Take a deep breath because it's a bit of a mire and you have to smile a lot when you don't feel like it in order to get your daughter the support she needs but you'll be shocked at how quickly she moves on in the right hands!

If your daughter ends up getting diagnosed please don;t look at it like a tragedy. Aspies can excel in life by learning to embrace their differences. By knowing their weaknesses, working around them, and taking advantage of their strengths they can go far. I can certainly understand your concern about the aggression though, getting kicked out of daycare is pretty bad

If your daughter do ends up getting diagnosed please don;t focus too much on it. I see alot of parents coming on here attributi ng every little problem their child has to aspiergers, when alot of the problems they present are just normal problems some children have The best gift you can give your child is try to give her the most normal life you can possibly give her. Give her the support and threatment she needs but also give her room to learn and grow from her mistakes.

Just read what you said about drugs - we don't do that with our son. I can't help thinking that you should only give them to your child if there is absolutely NO other option because they often cause more hassle than good and, at this stage, they may prevent you being able to work with your daughter to find out what is causing the behaviour. Right off the bat, what I read about you saying that your daughter has always been in daycare gives me quite a lot of clues.

Your daughter is hypersensitive and has had to cope with so much aggravation at daycare. Noises, smells, movement, inability to enjoy peer relationships. Imagine how you would feel if you were stood next to a nuclear siren all day long and then went home for dinner. Would you be sitting there smiling at the dinner table or would you be smashing the plates in a rage?

This is her way of telling you that she needs to take a step back and be in a quieter, calmer environment for a little while you work gently with her to help her overcome the sensory difficulties she has. She must be so very confused at the moment. I am cross that she was expelled from daycare but I hope this may lead to her going somewhere calmer and more suited to her needs and not the needs of the herd. Please, please drop everything and do this for her. Nothing is more important! Once you have worked with her a little bit on dealing with the sensory overloads, you can re-introduce them bit by bit and she will have learned to cope with them. She needs space. My son at mainstream school has an aide and a special corner of the room to go to on his own with a beanbag when he is stressed.

Once you get some sort of diagnosis you can start to work with her. Before he was diagnosed, I used to spend all evening - every evening locked in my son's room with him while he trashed it and trashed me with big meltdowns and rages just to keep the meltdowns away from his little brother. Now that we understand him and we have routines etc etc he is a different boy - we have much much less to deal with. Believe me - the drugs can wait for a while!

Could you go back through the threads and look at the bit about routines. I can't remember where it is but some parents went through their routines with their children. Routines really work towards these children feeling comfortable and settled.

Could you please tell us about what your daughter enjoys the most. What rocks her world? Maybe she needs an overdose of her favourite things just to cheer you all up before you get started on your new path.

By the way - my son is at mainstream school and played the drums on his own at the school concert and sang at the same time. One day he will be Prime Minister! (well - maybe)

Thank you so much for your replies. While I am upset that her daycare tossed her out, I assured her Mommy and Daddy would never do that. She was devastated to learn she could not go back and did not know why- which is what hurt themost- to see her hurt.

The one thing I brought up her meningitis too is because I have read some articles about infant survivors of bacterial meningitis having some behavioral issues around this age. But the thing is- this is not just a 'behavioral issue'. I mean no matter how we punish her- she can't stop. She turns into a completely different child and then as my Mom put it- afterwards it almost seems like she is shell shocked and she is always remorseful.

How does a doctor diagnose AS? Is there a blood test? Or do they just read the symtoms and rule out everything else? Like I said I am no doctor but I felt such relief reading here because I had never heard of AS until yesterday and suddenly I am reading going- that is my child, that is my child.

I am calling her doctor today so will be back later. As far as daycare, we have ruled that completely out for now. Dad is going to get a night job and stay home with her during the day for now. We are even considering homeschooling for kindergarten.

Thanks so much for talking to me. I appreciate it. I don't feel quite so alone anymore. DH is having a little bit of a hard time with it all but he understands now she cannot control it.

Anna

Hi Anna,

I have a five year old daughter who recently got an AS diagnosis. It sounds like you are doing the right thing to look into what is going on with your daughter. There were many "signs" for my DD too, but I just did not recognize them. Since we have the diagnosis I feel I understand my DD so much better, and that alone has helped a lot. Also, we have started some therapies to help her cope, and she is so much happier and functioning so much better at school.

Regarding how you get the diagnosis. We went to a developmental pediatrician who specialized in recognizing/diagnosing spectrum children. I am not sure most general pediatricians have the expertise to recognize Asperger's, especially the more mild cases. My pediatrician certainly did not. Basically, for us, they took a lot of history regarding my DD's development, asked my husband and I a lot of questions, observed my DD playing and then interacted with her, etc. The whole appointment took several hours. At the end the Doctor looked at me and said, "You know what I am going to say, don't you?" And, she got the AS diagnosis.

She is still the same beautiful, bright, sweet child she always was, now I just understand her better and can help her more.

Take care and good luck to you and your DD.

Katie (my name too )

P.S. Forgot to add, we do not use any medications, nor were any recommended.

that sounds so much like me when i was 4 or 5.... according to my own memories, and to what others have told me.
i am adopted and the adoption was at age 5. b4 that i was in foster care, had 3 sets of foster parents because they all couldent cope with me! wow i didnt think i was bad at all

i went to a day care center before i was adopted.. i never used to bother tryin to play with the other children because they just didnt interst me. i preffered to play on my own and make my own stories up about things and i didnt need or want to involve anybody else at all. i played with the same toy every day, and if any other child even touched it, i would hit them hard. if any other person so much as touched me, purposly or acciedently, they would be hit. if an adult touched me without my say so id hit them too and shout and scream at them. oh yes- screaming was one of my favorite things to do!
i cant remmeber having any problem with clothing apart from not wanting to wear any other colours but pink and dresses no trousers. i dont think i even owned a pair of trousers or jeans till i was about 8. then when i was in my teens i would refuse a skirt and only wear jeans or tracksuits!

as for food... the only food i would eat was tomato ketchup on toast. the bread had to be white, and not burnt. id throw it in the bin myself if it was burnt. i would not eat anything else whatsoever apart from ketchup on toast. the ketchup had to be Heinz....

i wouldent even eat chocolate or candy.
when i was adopted i remember being weaned off of my ketchup on toast and i hated it. but after a while i got used to only being allowed it at weekends. mum and dad got me to eat meat and vegetables, though it took me an hour or more to eat a child sized portion.
i had a teddy bunny from the age of 3 that was my only possession that was pre adoption. and this bunny had to be with me all the time 24/7 right up to the age of 15. it came everywhere with me, much to my mum and dads dismay.. but i never understood what was wrong with taking bunny everywhere with me. as far as im concerned - nothing was wrong. i still dont think so either.
i was a very naive child... from not being too good at socilaising... i would talk at people and demand- i didnt know what alot of things meant. i still talk at people nowadays but i did get a bit better as i got older. i didnt know the F word until i was 12, where now i hear 5 year olds saying it. i didnt know about sex and that stuff till i was 16, bit when i found out it didnt make me want to do it, and i still have no desire for that at all.
my life certainly has been a giant rollercoaster up to here, with the highs of being a child and being oblivious to other people so much so that i didnt realise or even think about whether i was different from anybody else. i only realised i wasnt like other people when i was 11 and started big school. i had a 1 to 1 support up school- not because of academic needs- but because i neede dhelp to understand things and a body guard. because i was terrably bullied whenever the support was not there.

i was very unhappy at big school because of the severity of the bullying. i got called alot of names including psycho, spazzer, spastic, syndrome, tubby, weirdo, ret*d, head case, freak and blobby. these hurt me alot.
i also was hit with drumsticks, sometimes my own when the bully would steal them out of my school bag then hit me with them, pelted with drum sticks, stabbed (with pencils and compasses) punched and kicked and glasses stolen and smashed several times.
all this didnt come without a reaction from me. i would throw things like chairs and tables, i kicked people and also stabbed them with pencils, but all of mine was in retaliation- but then it was me that got into trouble with the teachers not the bullies who did it to me first. they never got in trouble.
and my mum nagged at me all the time when i got home saying that i should grow up and stop acting like a baby, tidy my room because its a rubbish tip and its goign to attract rats soon and stuff.
i found out about aspergers syndrome myself whilst searching for something on the internet with i was about 19 years old. i tol mum and shes told me that i was looking for excuses for my bad behaviors and that theres nothign wrong with me.
i decided to go to the doctors and get referred to a psychologist. my mum agreed to come with me to chat about it to the psychologist, and after another 2 visits i got diagnosed with high aspergers syndrome because i have so many of the traits and are prominent. this ws age 21. the psychologist was surprised i wasnt diagnosed many years earlier.
but now im 22, im fine im happy.. i never had taken any tablets or medications for my behaviour and that is fine. i think doctors thes days are too quick to grab the tablet bottles.
i have a job running a convenience shop on a caravan/moterhome park bit i still have have my dreams of becoming an embalmer one day. for now i am ok doing this job.
though sometimes i need help to find other tasks to do other than the normal ones i do every day because its not easy for me to try and think of things to do that arent in my usual routine.

Stop doing that - punishment is bad, discipline is good. As you explore the world of AS, you will start to understand what I mean. We stopped punishing our AS boy and our family life changed dramatically.

"The Explosive Child" by Ross Greene is a great book - get it from your library so you can start learning the signs of an impending meltdown. It hasn't stopped them in our home, but we don't mark them by the hour anymore. Once we recognized there was a cause, we were able to avoid many of them.

maapservices.org has a huge listing of articles and information for parents and teachers - I found it extremely helpful in the early days of our child's dx.

There are a lot of books about homeschooling, including some on homeschooling an AS child - again, check your library and/or interlibrary loan.

Also, check your state requirements, as of now, Illinois does not require schooling until the child is the age of 7 (Kindergarten is an OPTION here although many don't realize it). There is a Senate Bill pending that would change it to age 5, but your state may not require she attend any school - even homeschool - and with years of daycare behind her, she probably doesn't need to go and learn her colors, numbers and letters all over again.

Okay, it's not in our blood. It's in our brains so there's two wyas:
fMRI
Or
Ruling out everything else.

First, stop punishing her. AS kids and AS adults look like misbehaving normal people. They aren't normal. On the other hand, AS isn't a death sentence either. It just means you have to take a different approach.

If this is the only school she get's thrown out of, you're lucky.
Get a DX, then you can get an IEP which changes the whole ball game.
Remember, that she is always your kid, not the DX, but you might have to go to school, fish her out of trouble, advocate for her....and so on. It's hard, but it can be done.

I have been AS all my life (and I am not young), and I wish, when I was younger, that there had been some of the drugs around that are around now. That's just me, and not everyone agrees with me, and I don't want to argue with anyone, but without the drugs, I'm an angry aggressive person (and I turn it mostly inward). With the drugs, I can function. Again, that's just me.

Final advice as a parent. Look to your own sanity. You can't help your kid if you go nuts yourself. My kid (also AS) is turning 18, in a few months, and he has the anger thing mostly under control....I say mostly, because it still crops up, and he refuses to take the drugs. I disagree with him, but I'm not about to force him.

Good luck

Don't mind me. I'm just re-watching the topic.

Allow your Daughter to have her obsessions. My obsessions were looked down upon, until just this year. In the past, my parents would tell me, "Stop talking about ______!" The obsession that would fill the blank would change, every two to three years. They've even forced me into the Mental Health system, during the second year that I was obsessed with Austin Powers. Now I don't really talk to them about anything. These days, my Mom can tell whether I've bought an addition to my Routie Collection, because I have a dreamy smile on my face, and she asks, "You've bought another Bus, didn't you?" My parents have decided to back off and that I'm going to do whatever I please with my $Money$. I just think that my folks are relieved that I'm a happier than I ever was before, in my life.