Child development screening for 2 1/2 yr old, need to vent

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A couple times a year the school system holds the state funded childhood development screenings for free that are designed to assess kids birth to age five and make sure they are developing correctly. It has been a year since my little guy has had one and I wanted to see how he was doing after all the work I have done with him. His first one ended in empty promises of a child study team being set up and all sorts of intervetions that never happened, but I figured it couldn't hurt to see. You see he will be three in September and that makes him eligible for the regular preschool programs and I am really fighting with the idea of sending him to preschool in this lousy system or keeping him home with me for a few more years.

I dread these things because like I and many others here experience he is one of those when put in certain situations he shuts down to the point that they think he is just shy and he could never have any behavior problems or be any trouble at all and all my fears are in my head. They never read between the lines or take note of the odd behaviors during these tests.

We get there and he clings to my shoulder hiding his head and face while we check in. Now we have to go across the crowded room full of kids and all sorts of different things going on to wait our turn with the first tester. This is where they ask all the "Can he dress himself" questions and the " Can he build a tower of 4 blocks" tasks. The lady is busy finishing up with one child and my little man is still clinging tightly to my shoulder. I start to get tired and finally get him to sit in a chair right next to me. Everyone that walks by says "Hello" to him and he quickly drops his head behind the chair and waits for them to go away. Then he spots the balls they have, two small ones, a medium one and a large one. Now I have to fight with him to stay with me and wait his turn which now feels like hours. Finally it's our turn.

We sit down and he promptly turns backwards in the chair away from the lady and begins to lick the back of the chair (something I thought Ihad gotten him past), I put my hand there and try and calm him. The lady then says, "Do you want to play with the blocks", he turns around because he loves blocks. Now we can get moving on the testing. She gives him the blocks and he builds the tower with four and she says "Great" and tries to move on, but he says "more blocks" so she laughs and gives him two more, but this goes on until he has almost ten blocks stacked and she tells him there are no more. Down comes the tower. He gets annoyed but she quickly asks if he wants to color with her and he agrees. She gives him this big pencil (which he must smell) and he tells her he needs paper.She asks him to draw a circle and he does a good job, then a line and again he does it, then she tells him to draw a person....he makes the same marks as for the circle and tells her it's his brother's foot,lol. She asks him to do a couple other things like hop or balance on one foot and he refuses and goes to the balls again. So she takes one down and asks him to throw it to her, he does and then she asks him to catch it. After throwing the ball at him a few times and it hitting him in the chest and rolling away she finally gives up. She goes back to the table but he just wants the balls. He takes them and organizes them in size, and then he takes them back where they came from and organizes them again and then he brings them back to the table and organizes them again and this goes on and on. The whole time she is trying to get him to do anything else and he just keeps finding ways to escape her and get the balls. Then she says "OK, take this folder to the table in the back with the red sign.

I'm thinking we are moving on to one of the other stations, but no we are apparently done. The lady in the back looks at the forms and says she thinks we should do some evaluations and that she has some info on him from his birth to three program. I know they were called because the birth to three program wanted him in school transition in March and that never happened. Well as she begins to tell me that they think he should have some daily life skills testing done he begins to get that look. The one that says I am about to blow and need to get out of here. I tell him please just stay here with me for one more minute, but he cannot stay in the chair and takes off. I catch him and he starts yelling a bit but sits down. Then he is up again and trying to get away. I tell the woman that he is going to meltdown if we don't hurry. At first she just keeps going then she realizes that he is getting very upset. He darts away and I catach him before he can grab the stuff off the nearby table and throw it. I carry him back to the chair and he slips away again and I catch him and the chair he is trying to throw. By now the woman has looked at his file and actually understands that he is in distress (She was the only one who knew what they were looking at) and tries to hurry. She tells me, "I'll throw everything in this folder and my card is in there, you can look at it later. She just wants me to sign two papers so he can have the evaluations she thinks might help. ( this has now changed to not only a daily life skills eval, but she has added a psychological:autism eval., and a behavioral eval.) Well before I can get the papers signed he is off again, I scribble my name on the papers and frantically take off after him. He is running the maze of people and tables and yelling. A woman steps into his path and he stops dead and turns to run the other way, thankfully I am there and grab a hand. He throws himself to the floor ( you know those tile over cement cafeteria floors) and I catch his head before it hits. I scoop him up because if I let him down he will continue this. It's like trying to hold a wild animal, he hits me in the face twice and when I don't drop him he bites me in the neck. I struggle towards the door as everyone watches either in disbelief or with those looks that you want to smack right off their faces. It took everything I had to hold this kid, it was like I was fighting an adult. We get out the door and it is kind of misting rain out and that hitting his face seems to bring him out of it a little and I can feel his body relax. I walk towards the parking lot and he says " Home Mamma". I set him down and tell him yes we are going home. I can hardly stand up because I am shaking so bad from the fight and the pain in my neck is terrible. I ask if he can hold my hand and walk to the car, thankfully he could. I put him in his seat and he just slumps, he won't make any eye contact with me and turns his head away if I try and force it. I ask him over and over again if he is alright and he finally says, "sorry I bited you, mamma" and "we go home now". He was like a zombie all the way home. I felt so bad for him.

I thought I had come so far with him. All the work we have done and all the progress he has made disappeared in a second. What am I doing wrong? I thought he would be all right. I am left nursing a swollen neck, pulled back and arm muscles and a major case of the " I'm a crappy parent" blues. I don't even know what anyone can say, I just really needed to get it all out, maybe now I can sleep.

1st thing is that all parents who wonder what they are doing wrong are trying. That makes you a good parent. I tell my daughter (6) that to be good is to try to be good. You may not always succede but it is in the trying. Since we had our daughter diagnosed last august we have gone through so much. So many miserable failures to brilliant succeses. Each time we think that things are hopeless or that things will always be great. Then reality hits with something you didnt expect. Recently we had taken our daughter out of a french school in favour of english.(we felt the extra language was an extra stress she didnt need and the school was not that great with her) When we knew we were switching we took her our a week before march break then started to make alternative arangements. She started her new school 1 week after the march break or so, it worked out to about 3 1/2 weeks off. During this time we had a behaviourist come to help us to manage her behaviours. We use charts , a token system and other techniques which work pretty well.
So off to school things are looking good. We prepared them for the worst we told them to watch for warning signs we tell them that things can look like they are going well and appear suddenly to change. They let her start class reletively normaly, an autism expert comes to 1 class and determines that things are fine. And for the first coupole of weeks they were.
Then it starts, a couple of reports of minor things. Then a bad day but still under control them seemingly out of the blue (though not entirely) we get a call that she has her pants off and is jumping on desks and tables. In class and then in the office.
We intervene, the next day turned out well, big surprise to everyone but me. The principal told me the next day might be tough as the kids will be watching a play put on by the older kids. I ask what play? They never thought that it would be important to let us know about these changes in schedule in advance! So the play is little thumbelina. I dig it up online and print some pictures. Read it for bedtime and tell her she will see it the next day. (Voila! like magic she has a good day)
Now the school thinks things are fine, the following day my wife gets a call before 10am saying that our daughter is out of control. When my wife gets to the school our dughter is on top of a desk naked sliding back and forth in her own pee, yes I said pee.
We have never seen anything close to this at home and I am anxious at our meeting monday to find out how it is that she was allowed to completely undress herself and than be allowed to humiliate herself infront of her entire class?
They just dont know how (or are unwilling) to manage her behaviour. She makes their lives more difficult and they (the teachers) resent having to deal with her.
I write this not as a bad story but to illustrate that while all the stories are different they all seem to have some common elements, also they all come with some frustration.
Remember that your son has a condition that makes certain things difficult for him and learning what the triggers are, and what can help, only comes with time. And in the mean time we struggle, but along the way (at least in my case) your child will do or say things that inspire you and that is enough to remind you that you are doing the best you can.

It sounds like you are doing a great job.

He was put in a situation that was extremely stressful for him - so his anxiety behaviours came out.

The fact that you haven't seen these behaviours for a long time shows what a good job you are doing.

My 7 year old would also fall apart in the circumstances you described.

A psych evalutation sounds good - hopefully they'll actually do it.

Regards
Smelena

You are an extremely GOOD parent -- better than most of us, really. Under those circumstances, you held everything together, did what you had to do for your son, and still didn't lose your temper. AND, considering that your son said " "sorry I bited you, mamma" I think he has great potential too. That requires empathy. Amazing in a child so young, and a child who may be on the spectrum.

What kind of work have you already done with your son? Will you get preschool and in-the-home ABA type therapy now that he is three?

Kris

I read a lot of the story about your son and the head problems he had, and the signs of physical disability he was developing as a result. It is amazing you have brought him to the point where he can fight you with adult strength at 2 1/2! Now you are going to tell me again that you are not an awsome mom?

It sounds like you have done a ton of work with him developmentally and physically, but the plain fact is, he has autism! This was a strange environment, with way too many people in it, being asked to quickly transition from one program to another, no wonder he blew his cork! It sounds like he did a pretty good job, he did some of the tasks, the followed the expectations for the first half of the program or so, waiting and such for a long time before his turn. He even appologised for biting you meaning he recognized that he did something wrong and felt bad about it!

I know I would have left the meeting feeling devistated. I feel so bad for you, having 3 children that are all so high needs! Is it possible to get your husband involved with some of this stuff? I think it is just too much for you to do all on your own, or at the very least, you need some down time several days a week, just go out, grab a coffee, read a paper, let him put the kids to bed!

I know you see everything that went wrong, but when I read it, I saw a lot of things that went right! He is only 2 1/2 and already he HAS come really far, it should only get a little bit better every year with him! At least he is being flagged as needing extra support prior to school entrance. I think that you should make a time that you can call back this clinic, with the kids out of the house, and have a good talk about what can be done for him. I agree that school in September is probably not a good idea, but then again, maybe if they have the right support for him, it may not be as bad as you fear, at least then too, you would get a daily break of sorts...

Thanks everyone, it was so nice to read these posts after a long sleepless night. Are we sure I can't just hide him away from the rest of the world forever so he never has to feel like that again....just kidding. I just can't imagine what this must feel like to him and it really hurts to know he must deal with this.

I used to lose my temper alot and still do occassionally, but once I became more educated about the behaviors I realized these actions mean he is in distress and that brings out the "mommy make it better" side of me. It is so hard sometimes not to just sit down in the middle of it all and cry.

I guess the good side of this is that they finally saw for themselves the side of him I have been talking about. Maybe they will help now.

What kind of work do I do with him?
Since he was about 18 months when he was dx'd and I began to realize no one was going to help us, I researched and learned everything I could and began a trial and error process of things that helped him and things that didn't.
He recieved no therapy for his severe sensory issues, so using the books The Out Of Synch Child and Raising The Sensory Smart Child I started a daily sensory diet. It provides both input for the the things he craves (ex:deep pressure,vestibular) and desensitizing for the things he avoids (ex:textures,oral). It's a routine with activities throughout the day and it has helped tremendously.
I also use a modified version of the Greenspan Floortime therapy, this was more necessary early on and is now used more for when he will not engage with anyone or becomes obsessed to the point of not engaging. I made it my business to keep him engaged with the world for as many hours as he is awake as possible, now we can relax a bit but maintain many hours.
As far as language skills go, they would not give him speech therapy even though he was many months behind so I also did this. I used a combination of first sign language and picture books, then incorporated the PEC system, now he can talk really well, but has a few issues that need to be watched....slurred words and odd pronunciations, but at least he can communicate and that made a huge difference in his quality of life and the frequency of his meltdowns.
All of this together we spend about 20-25 hours a week working on this. It is really hard especially with the three other kids, but I get them to help out alot and it in turn helps them.

I hope they will give him some services......do you think an ABA program is a good idea for him?

Wow! Thanks for reading about my little guy. I wish I could get him into a school for autistic children. I know the mainstream classroom is ultimately the place to be, but I wish he could at least get started out in an enviroment that understands him. I don't think there are any autistic support classrooms in this county. Thanks for pointing out the positives. HMMM, I don't know what I would do with time alone,lol.

I don't know much you could be doing differently, I worry though that you don't have the time you need for your other two childrens special needs because you are working so hard with your little guy! I will be keeping my fingers crossed that some good comes out of this and you do start getting the services you need! I don't know much about ABA, so I don't know if I should comment, but I don't like the sounds of programs that use punishment. The reward programs I think sound really good and I don't think they could hurt him! If you could get some help with him too, that would be wonderful, because I really think you need the support.

If his speech is pretty good at 2 1/2 then I would perhaps take a step back with that, just do lots of modeling with words (pronouncing them in an exagerated way for sounds he has trouble with as you go through your day) So if a child has a problem with the ST blend, you would say "Do you want to come up SST airs with me? I like going up SST airs, do you want to count the SST airs with me? I was told by my daughters early years program that was the best thing a parent could do for speech. My daughter arrived at 4 with terrible speech, she could not pronounce R's, L's, M's or any S blend (ST SC etc) So "school" was goo. I was told that dispite the fact she could hardly be understood, it was mostly developmental, meaning many kids made the same mistakes. I did a class to teach her through modling for S blends, and we got some picture cards to get her saying words using some blending techniques. She took off real fast, and soon we worked on R's and L's, he speech is greatly improved, she will be 5 in september and it is not perfect, but near acceptable norms, they want to wait until she is a bit older for anything more intensive, but think she will mostly outgrow it. (She picked up M's on her own).

I think a lot of kids at 2 1/2 or 3 are just about impossible to understand, yes you can work on them, but a lot of it is stuff they will outgrow anyway!

As for these appointments and clinics, is it possible to make sure that you book him in for the first evaluation of the day? Usually this is a good time for young kids, they are not cranky, the offices are not packed, and you don't have to wait too long. Try and see what you can do ahead of time to see if you can avoid waiting around and a chaotic enviornment, or see if you can leave mid way if you need to, and come back another time to finish up, or finish up over the phone. I know trying to manage vogon beurocracies is very difficult, they have their 'ways" but you can see if they are willing to accomidate your sons special needs. I agree when your mommy sense goes off, it would be best if you leave prior to a meltdown, I wonder if frequent public meltdowns can become programed too if they are allowed to happen too often? It is not the exact same, but we had a dog that had patterned anxiety. She was a pound dog, and every time we left the house, she would start barking and not stop until we cam back, she would just work herself up into such a state it was ridiculous! One thing we did was not leave her alone for 4 months. We worked on getting her comfortable with being in another room understanding we where not "gone". When we started leaving her alone again, she no longer 'remembered" the old pattens she had, and would just go to her cage and lay down. I think that 90% of her problem was that she was patterned in negative behavior, and people can be the same way. If you always fear something or behave in a certain matter, then it becomes second nature to do those things, like throwing huge tantrums in public! So with a child like you son, you more reason then just preventing todays tantrum, you may also be preventing a pattern of behavior in the future!

You are a good parent! I think you are doing a great job with your son.

Jesus....what an ordeal.

As an aspie mother of at least one aspie kid, I coudl not understand why other mothers were unhappy about autism. You see, my son is so passive, and he is also zoned out or thinking about somewhere else a lot of the time, he is never any trouble except for the meltdown, and those aren't frequent as long as we stay away from Walmart (Thomas).

I really appreciated seeing your perspective on this. Hang in there, it soudns like it will all work out now that someone finally got a clue. I had to take mine back to the screenings two or three times and they promised all sorts of stuff..finally I just gave up and got a docotor to refer me to a psychologist who specializes in chidlhood autism.

She has 2 other high needs kids on the spectrum too! I just don't know how she does it!

I think it's a gargantuan leap to go from having a 2 1/2 year old melt down in public to the conclusion that you are a crappy mother and all the progress he's made went down the drain. Even NT 2 1/2 year olds melt down in unfamiliar situations or when they are tired, hungry, or ill. Spectrumish 2 1/2 year olds tend to melt down with greater frequency in those situations and you need to prepare yourself for that. Hopefully if things go well those meltdowns will occur with less frequency overtime but it's not likley that they will evaporate by age 2. These times are hard on us as parent--both in that they are discouraging and exhausting--but I'd really encourage you to put this in perspective. One bad afternoon is not a reflection of the progress he's made. In contrast when my then first grader had acute school anxiety that exacerbated every other issue he'd ever had (obsessions, sensory, ODD, aggression, etc) so that he looked more Autistic than he ever had in his life and it took me well over a year just to get him back to baseline much less to start making forward progress again, I really did think our efforts had gone down the drain.

These times are indeed hard on us as parents but in time I hope you'll realize that into the life of every parent of an ASD child some meltdowns will fall and some hearthaches will come. Never measure progress by the snapshot of one day but by looking over a period of time.

It sounds to me that the little darlin' melting down at this screening was a blessing in disguise. On another forum I'm on we're always hoping the kids will show their stuff at evaluations because so often the diagnosticians don't observe what the parents are trying to conveying. Hopefully you'll be able to get school services and if not tap into private therapies (many insurance companies do cover) so you will not have to bear this entire load yourself. I believe that parents play a vital role on the homefront but it often is beneficial to involve others even when mom as therapist is doing a great job.

I really appreciate everyone helping put things back in perspective here. I think I am just doing so much myself that I let this one day get me so upset. It is hard with the three of them that have been dx'd and my fourth who is a bit quirky, but not nearly as bad as the others(puberty is coming, keeping fingers crossed,lol). Dividing my time among the different needs sometimes takes all I've got and I constantly worry that they are not getting getting enough of me. I think that is what I was thinking that day, maybe if I could have devoted more time or something instead of running around from school meeting to school meeting trying to get this damn system to help me, but you all have helped me remember that these things will happen and you just have to go on. He was really off the whole rest of Friday and so Saturday we had nice weather and I got him outside, his favorite thing. We took them all to fly kites and although he could have cared less if the kite was in the air or not he enjoyed running up and down the hill and just being with us. Surprise, surprise we decided to go get something to eat, usually a test of patience with him and he was an angel,lol. He did so good, still had to play with the light and yell at it (flourescent right over the table, ahhh) until we unscrewed the bulb, but no huge meltdown like he usually has. I took this as a sign for me to never again think I can predict how he might react in any situation and to just be prepared to provide what he needs when it happens. What would I do without this forum,lol.

I am glad to hear you are feeling better about things!

It is easy to loose perspective from time to time. At the end of the day, all you can do is all you can do! Hopefully all this fighting and running around will start yielding some results!