Explaining Pervasive Developmental Disorder (PDD) to the Typical World - Guilt Trip

[WearyWoman]

Group,

I'm sorry I've been away from this forum for a while now - busy stuff going on in my life. I just had an experience, though, that makes me wonder how I should handle helping my Bubby (age 9) navigate the world with his Pervasive Developmental Disorder (PDD).

Bubby is enrolled in a faith formation Catholic education class that meets once a week in the evenings. Our faith is important to us, and we think it's a good thing for him to go, in general. The problem relates to Bubby's Pervasive Developmental Disorder (PDD) and the expectations of the church.

First of all, Bubby has SO much anxiety that it was a heroic effort just to get him in the car to go to the first class. He went last year, but of course, it's a new year, and we had to start over with the anxiety. Once he has attended a couple of times, his anxiety lessens, and he enjoys himself more.

I explained his Pervasive Developmental Disorder (PDD) and special needs to the religious ed coordinator, and his class teacher is also aware. They know he has anxiety and how difficult it was just to get him in the building.

On the second week of class, he came home with a note stating that his class will have to read some prayer petitions at a family mass coming up this week - at a podium, using a microphone, in front of the church. Okay . . . . I know my Bubby, and I think this would cause him a lot of distress. He has speech issues, and the anxiety around groups of people would be a lot for him to handle. Heck, it would be hard for me to get up there and do that! My fear is that he would bolt out of the building and never want to come back or something - that it would be a negative experience for him.

Well, it just so happens that I have a professional exam to take out of town this week anyway, and I had planned to call the church to let them know that we wouldn't be coming due to the schedule conflict. My hubby will also be out of town for a work training. But the church called here first as a reminder to come to the special service. My hubby was home at the time and explained that I wouldn't be coming with Bubby because I have an exam out of town. My hubby is not Catholic.

The religious ed coordinator then told him she wants me to call her personally to verify that with her. Of course, my hubby was offended by this since he had just explained that I would be out of town. Ughh . . . so now I plan to call back and reiterate why we're not able to make it.

But . . . I'm also considering taking this opportunity to address the expectations here and the need for modification for Bubby. In general, people have been understanding and empathetic regarding Bubby's Pervasive Developmental Disorder (PDD). But sometimes they just don't get it.

The smallest things teachers and other parents take for granted, are monumental for our family. I am constantly educating others about the effects of Pervasive Developmental Disorder (PDD) on the kids who have it and their families.

I feel upset by this situation - that I have to call and justify why we aren't able to make it to the service (hubby's explanation was either not good enough or not reliable enough!) and also the reasons why I think the expectation of reading in front of a large congregation might not be reasonable or a positive experience for Bubby. Of course, I'm also anticipating all of the other curve balls that could come our way in this regard in the future.

I thought we were doing well just to get him to class, but the pressure to "make" these kids typical is quite relentless. I wish someone at the church would have thought to have contacted me or sent a special note for me with Bubby last week seeking my input on whether he could/should do the reading.

It's really my fault for not contacting them sooner. My life gets crazy busy sometimes, and it's hard to keep up with everything.

Weary

 

[JJJ]

I would just explain to them that due to his disability, he will not be able to do all of the same tasks that his classmates can do. If they give you a hard time, explain to them that God gave your son these challenges and that you are sure that He knows that your son is doing the best he can to learn about the faith.

I've sent you a private PM as well as I didn't want to start a religious ed discussion on the board.

 

[TiredSoul]

I would be offended that they did not take your husbands word for it. I would call back and tell them your husband was correct and you will be out of town. I would also tell them what JJJ said.

 

[WearyWoman]

JJJ - I will definitely continue to advocate for flexibility for Bubby. The truth is, we know him better than anyone else in the world, and maybe this is a wake-up call for me to get more involved with each class. I just find that my energy level is drained with working full-time + and studying for this exam, having an older child with some issues and a hubby who also works full-time. Life is challenging enough, and I guess I didn't expect that even the church would put more pressure on us. In fairness, most people probably have no idea just how much effort it takes to raise children with special needs or the unique issues and concerns involved. The church folks see a quiet little boy in class, but not the turmoil, hard work, and determination it took to get him there. They see him trying to connect with other kids awkwardly, not the falling apart that sometimes happens afterward. They see a wonderful chance to participate in a service, not the incredible anxiety and sensory overload from his perspective.

Jules - I feel offended on behalf of my husband, although, then I feel guilty for feeling offended! I've been procrastinating with calling the religious ed director back because I don't want to overreact, however, I'm dreading the guilt this conversation may leave with me. I try so hard with all things related to our kids, and it never seems good enough for the world around us.

 

[TiredSoul]

WW,
I know what you mean about feeling offended and then feeling guilty for feeling offended. It's ok. If you're like me, it causes much more anxiety not to deal with it (make the phone call) than it does to just do it and let it be done with. You are doing a great job for your children. Don't be hard on yourself. I also know what you mean about added pressures. It is exhausting. How long has Bubby been taking Intuniv? How is it working for you? by the way, I also have a Bubby - or Bubs or Bubba or Bubbalicious!

 

[WearyWoman]

Update - I called the religious ed coordinator to verify that what my husband told her is correct. I feel so demeaned by that. Anyway, she wanted to know what day my exam is on - whether it's the day of the mass or not (it's not, but I am going out of town ahead of time, need to pack and study, etc.), so then she suggested my husband bring Bubby if his schedule allows (it doesn't, as he's out of town on a work training). She wanted to know how my studying was going - like she was feeling me out as to whether or not this was a legitimate excuse or made-up one (that was my impression).

As the conversation was happening, I felt myself getting anxious and shaky - why? I don't know, I guess I'm just a nervous person. So I told her my hubby was offended that she wanted me to call and "verify" what he had already told her. She stated that she just wanted to make sure we were "all on the same page". What?!!! I just said "okay" and hung up, as I was feeling all shaky and upset - I'm not a very assertive person.

I'm trying to process this. Why do I have to plead my case to a religious ed coordinator? Does this seem controlling to you? I don't appreciate that she would assume that my husband and I may not be "on the same page", or that she is entitled to know when my exam is scheduled and how my studying is going.

Just what I need on my mind right now as I'm cramming for the exam.

 

[TiredSoul]

I think it was completely inappropriate for her to question/doubt your husband and have you call to confirm. You're probably wishing you could have thought of something to say when she said she wanted to make sure you were all on the same page. It will fester in your mind if you don't somehow convey how offended you are. Can you send her an email or note? I know for me, I do WAY better handling confrontations in writing rather than in person or over the phone. I tend to want to 'smooth things over' when I am talking, rather than really saying what I really need to say. In the note or email, you could also mention what JJJ said above about your child not being able to participate in everything the other children do - you could also write what you said above about the way the world sees your child and how difficult it really is and that you had hoped not to feel the pressure you are feeling.

 

[KTMom91]

My opinion...it's none of the coordinator's business. And I would have said so...however, I'm confrontational. I would also educate the coordinator on your son's diagnosis, and let her know she needs to be more flexible in her assignments.

What did your son think about the idea of speaking in front of everyone?

 

[PatriotsGirl]

One of the reasons, though I believe in God, I do NOT attend a church.

 

[WearyWoman]

Jules - I feel it's inappropriate too that she had me call to verify what my husband said. And, a resounding yes that I wish I could have said something to her right there on the spot. The fact is, I was too upset and nervous feeling. I wish that wouldn't happen to me in times of stress, but I am a sensitive person to stressors. I have been considering sending an e-mail about this. I don't know if I'm making a big deal about it, but I do feel hurt and offended, even. I definitely communicate better in writing, because I can take the time to consider my words. I'm seriously stressing about this exam coming up, and that's probably contributing to my overall anxiety level.

KTMom - I felt like telling her it was none of her business, and I'm not sure it would have been wrong to do so. I just try too hard to be nice, and then I often wish I had been more assertive after the fact. It really wasn't any of her business. Honestly, I didn't even tell my son about the note they sent home - that he would have to read in front of a (very) large church. I know what his reaction would have been - total fear, followed by a refusal to go or participate. If I didn't have this schedule conflict, I would have had to work this out with the church. It all comes down to who is functioning in the capacity of director, teacher, etc. Some people are flexible and understanding, and others, well . . .

PatriotsGirl - I understand your thoughts, and while I agree that churches are not without their problems, they are meaningful communities of faith and support for a lot of people. But people will always have faults, no matter what.

 

[DaisyFace]

WW--

I think the answer to your original question - whether to have your son do a reading and whether/how to educate people at the church....I think a lot of it depends upon the church.

Some churches are like big families....in which case - why not let your son do a reading? A big, supportive, family-type gathering would be a perfect "practice ground" for standing in front of a group.

Some churches are more formal...in which case - I would not let my child do a reading. Too much pressure before and after the event (if it didn't go well).

Regarding the coordinator? You may be over-thinking her motives. She has planned to have the children do the readings. The entire class may be "chickening out" and cancelling for various reasons. She may desparately be trying to find the folks that cancelled - but can be talked back into participating.

Remember - very few people enjoy speaking in front of an audience. So a great number of children may have gone home and told their parents they didn't want to/were nervous to etc etc...And a great number of parents may have begged off.

This is not necessarily a Pervasive Developmental Disorder (PDD) issue. It's a "human nature" issue.

 

[Fran]

I suspect your son is not the only one who would be anxious talking in front of a huge crowd. The church should be at the forefront of accommodating your child who is trying to hard to learn his faith. Maybe several of the children couldn't do it and this person is getting annoyed.

I absolutely would not tolerate being grilled about my schedule or whether my husband was telling the truth. Very intrusive.

You are the adult and the mother. You don't need to justify your schedule. If you could make it, you would make it. Enough said.
Man, my blood pressure went up reading your post and update. Not many things surprise or anger me with difficult child but being treated like a
child and a stupid one at that is probably up there of the top 10
You do NOT owe this person an explanation or justification.

 

[WearyWoman]

Daisy - Our church is a very large church (over 1,100 members and typically several hundred come to any given service). The building itself is very old, large, and traditional. We have only lived in this area for a few years and do not know a lot of people. I understand that our coordinator's job is to promote attendance and participation. My problem is with how she's going about doing this. I don't find her approach positive or understanding. Contrary to what her actions seem to imply, we really do have a scheduling conflict this week. But I somehow feel shamed for making a decision to not try to squeeze this one more stressful thing in the night before I leave town for my exam.

I would be thrilled to "let" my son do a reading in church. The fact is, his initial reaction to new things is ALWAYS negative. It takes a lot of time and practice, patience, support, encouragement, help, and love for him to do even things most kids would consider fun, such as baseball and swimming. He hid under lawn chairs for the first two baseball practices this year, and he refused to go in the pool at all for swimming lessons. He loves both activities, but it takes careful positive experiences for him to really get to the point of participating and enjoying these things. He'd rather stay indoors all day playing with his own things. And it would certainly be easier on us to let him do just that for the rest of his life. But we have tried very hard to get him involved and to have positive social experiences. Most people would be shocked to know the extreme effort to just be able to go to a restaurant or grocery store without a meltdown.

In church on Sundays, he sometimes covers his head if he's feeling shy, or he'll stand up by the pew and do squats over and over to get rid of his nervous energy. If candles are burning, the smell is overpowering to him, and we may have to leave if he becomes too agitated. You make a great point about the fear of public speaking being human nature (I have it myself), but my Bubby's fears and apprehension, resistance to change, sensory sensitivities, social and behavioral development go far beyond this. I know for sure that kids with autism spectrum disorders have very different experiences and perceptions of the world. Often, they're much more sensitive.

Realistically, for my son to be able to do something like this, we'd need to practice in a sensory friendly environment for a lot of time and with gradual exposure to additional people, sounds, etc. I don't think putting him in this new situation that would certainly be fear-provoking for him, without the necessary support is a good idea. As parents, we all know our children better than anyone else. Our experience and intuition guide us to make decisions we think are right for our kids. A negative experience can be just as powerful in a bad way as any positive experience. And, recklessly forcing Bubby to do something like this without proper preparation could be a disaster. In fact, he often gets physically aggressive and mean when he feels overwhelmed or pressured. This is another reason why I wouldn't go to this service without my husband there to help. I can no longer physically manage him during his meltdowns.

I wonder if there is a lack of understanding about autism spectrum disorders or if people are just uncomfortable with them. In my experience parenting a child on the spectrum is nothing at all like parenting a typical child. It affects every aspect of our lives, from the moment we get up in the morning, until the moment we go to bed at night, when we're at home, or when we're away. It's not something that can be put on the shelf for a while when someone else requires it.

I accept that my son has an autism spectrum disorder, but I also accept the responsibility to help him reach his full potential in life. I wish others could be more accepting too.

 

[Bluemoon]

I can really relate to this. "They" (at school) have decided that all the kids in my difficult child's class have to give a public reading of a book for a grade. It was supposed to be a voluntary 4-H thing, but they have decided everybody has to do it. For my difficult child....I have a better chance of getting him to build a rocket ship and fly to the moon, lol.

I really think this "attitude" we encounter is mostly due to a lack of understanding about Pervasive Developmental Disorder (PDD) children. Just getting people to understand that his problems are not a result of a failure to discipline him and that more discipline will only make things worse takes up tons of my time and energy.

As for the church coodinator, she sounds to me like a busy-body who has some boundary issues. She probably has no ill intent, really, but she is obviously not beyond using a certain amount of intimidation and rudeness as a means to an end. I hope you can get to a place some day where people like that will not be able to rattle you. I know it's hard. I struggle with things like that, too.

 

[WearyWoman]

Fran - My blood pressure was really high too. Now that I know how this person operates, I'll be better prepared next time to set boundaries. I need to work on my assertiveness skills. I would love for the church to be that soft place for my son, like home. It's unfortunate that people in positions like this miss the boat sometimes. I appreciate your words, as they validate my feelings about this.

Bluemoon - I'm really wishing at this point that I hadn't called her back today - that I'd just let my hubby's conversation with her stand as it was. I've gone over the dumb call about a hundred times in my head. What put it over the top for me was when she thought herself entitled to ask what day and time my exam was scheduled and when I'd be leaving and that she needed to verify that we were all on the same page, whatever that means. She absolutely has boundary issues, and there's no doubt she'll rub other people the wrong way too, unfortunately. I probably won't send a follow-up e-mail. It's best if I can just move on at this point. I think it would be more appropriate for the church to ask for volunteers for something like this than to require all young kids to do something like this. You're right that I need to blow this off more. I don't know why I fixate so much.

 

[TiredSoul]

in my opinion, you fixate on it because it bothers you. Are you going to become un-bothered by it, if you don't address her about it? If you are, then I agree let it go. If it will keep bothering you, write her an email and tell her how you feel - by doing that, you may just save someone else the trouble because maybe she won't do that again if she realizes how she comes across when she interrogates you like that. Just a thought.

 

[WearyWoman]

Jules - I'm not sure how long this will bother me, and it would be freeing to put my reaction into words and send her an e-mail. Maybe I should type one up and save it, ready to send after I've had some time to consider it. This board is the best. It's truly the only group of people I can talk to about this. And, I know in the scheme of things, that this isn't a great big deal. I'm actually surprised at how upset I feel about it. I had a migraine this morning (probably from stressing about this exam so much lately and not sleeping well), and it just got to me. Fran really stated well how I have reacted in my mind - that I shouldn't have to justify my decisions or seek permission from this person to not attend this service. The way she questioned and implied that she didn't trust my husband's information was ridiculous. I was offended by her intrusive questions. I'm actually a pretty patient person, and so is my husband, and we were both taken back by the manner this coordinator communicated. Behind it all, there was an air that I am not prioritizing church high enough, and I resent that judgment. I especially resent it given how much dedication it's taken to get Bubby to go and participate. She has no idea. I don't think she's married or has children, much less any experience with special needs.

 

[Marguerite]

I wonder if there is a lack of understanding about autism spectrum disorders or if people are just uncomfortable with them. In my experience parenting a child on the spectrum is nothing at all like parenting a typical child. It affects every aspect of our lives, from the moment we get up in the morning, until the moment we go to bed at night, when we're at home, or when we're away. It's not something that can be put on the shelf for a while when someone else requires it.

WW, I also attend church. Ours is a very small community church but frankly, often the situation can be very similar. The problem is, church committees are NOT generally staffed by professionals but by untrained volunteers. These people are also often highly motivated but in their lack of training they can walk all over others and use their faith as justification. Not always, obviously, and not just churches or even places of religious worship. Sometimes it can be a secular organisation (the local athletics or sporting group) which causes you this sort of difficulty for similar reasons. You can get zealots in a secular sports group just as readily as in a religious group.

We've raised several Pervasive Developmental Disorder (PDD) kids through our church. WHen I look back at the people we had problems with, none of them are church members now (they left because they could't control people as much as they wanted to). One woman left and then started up her own church - she calls herself "pastor" but has zero professional credentials. She is a very intelligent woman and deeply committed, but in her zeal she also treads on a lot of toes. I remember an incident with easy child 2/difficult child 2 when she was about 10 years old. This woman had Sunday School duty that day and asked the children to close their eyes and visualise God. The woman asked the kids what they could see. easy child 2/difficult child 2, ever literal-minded, said, "All I can see is red." Which, if you close your eyes and are asked what you can see, is the light shining through your eyelids. But tis woman (who I now recognise as always needing a spiritual crisis to go and fix) declared to me, in hushed, horrified tones, that my daughter needed to be exorcised. When I failed to be equally horrified and panicked, this woman then said that no wonder my daughter had problems, since I clearly did not take the concerns seriously.
Frankly, my very bright easy child 2/difficult child 2 began to move away from church attendance at this point - there is something about being told in front of the other kids that you are possessed, that really causes rifts with some of the more vulnerable, younger kids...

Another incident, a man this time. He is a very strict, controlling parent (he also left a few years later when he could not drive the congregation towards a more narrow doctrinal position). He could not cope with a lot of interesting things - for example, he objected to those of us with choral ability, singing in harmony. To his mind, unison is the only valid musical expression. He actively tried to block the choir rehearsals and performances. But he also could not cope with my boys. difficult child 1 would often make noises and could not sit still. This man would get physical with difficult child 1, when husband & I were not there to witness. It was difficult child 3's godmother who caught this man literally dragging difficult child 1 to a chair and yelling at him to sit still. Godmother got in between them and sent difficult child 1 to find us and stay with us, while she tore strips off this guy. And I personally saw this same man get very angry with difficult child 3 for similar behaviours. I also had this man telephoning me and yelling at me, because word had got out about someone in his family (a health problem in her family had upset his young niece) and he thought I had been gossiping, and rang to abuse me before finding out if I had said anything. I was not the gossip, it was someone else. But he never apologised even after it was obvious it was not me. Mind you, it was his daughters who became difficult child 3's greatest champions at the local school; they were my 'moles' who would report quietly to me about incidents of teachers bullying difficult child 3. I don't think their father knew.

You get people like this in society. But in any organisation where there is a pastoral care component (and yes, you get this in sporting groups too) then you get the untrained fanatic who uses information as currency, or who uses their position to try to control other people. Just as the man at church was convinced that all that was wrong with my kids was lack of discipline (and he set out to provide that discipline when we were not looking, in order to be proven right), then so was the woman at church also trying to prove HER point and use her position to get her own kicks from creating a crisis then fixing it. These people are not experts, and if you think about it, the very organisation you count on for help and support is also the very type of organisation vulnerable to people like this stepping in and trying to assert their own controls, for their own ends. Of course they don't see it that way and would deny it if challenged - they can always find a quotation to justify their behaviour.

But what it comes down to - if you are religious, the church can be a wonderful support for you with a difficult child. Or it can be an unmitigated disaster. If things go bad, don't blame the church. Blame the individual who causes you grief. But be aware of the dangers and protect yourself. Do not leave your children unattended with anyone, but instead either volunteer yourself (so you are there as a witness) or keep your child at home. I sometimes left my children with godmother, or a couple of others I trusted, but I also made sure I was present at enough of these sessions so I had some idea of how these people operated. Only after I knew what these people would be like, did I trust them enough to look after my kids in the manner I required.

It is a temptation to enrol your child in various social or development groups, purely to have a bit of respite. But too often this is when your child is at risk of abuse. Not necessarily anything sinister, but abuse is abuse, and the man who dragged difficult child 1 to a chair was abusive, just as I consider it abusive when the woman was telling my daughter that seeing red through your eyelids when having your eyes closed and trying to visualise God, is actually symptomatic of demonic possession. Abuse can take many forms and can be found in many places, even where it is not intended or even seen as good moral guidance.

And I say this as a churchgoer myself.

Since then - easy child 2/difficult child 2 does have faith, but will not attend church willingly, it caused her too much distress to be 'outed' as 'possessed', in front of the Sunday School class of younger but impressionable children, when she was 10 years old. So the ultimate evangelical aims of the woman at church actually backfired badly. A pity. But this is what risks happening.

I hope this helps you find the courage to stand up for your child and your family, against a control-freak and bully who is grossly invading your privacy. Nothing justifies such behaviour. Nothing.

Marg

 

[Fran]

Wearywoman, you are still in the formative years of warrior mom growth. At 9yrs old, you are still reeling from the diagnosis and all that entails. Trying to get the education and home behavior in line is a life long endeavor for many of us. When my difficult child was that young, I was still terrified because no one could tell me what that meant for difficult child's future and our future. I still had some guilt that I missed some essential ingredient to raising children and this was all my fault. As my confidence and experience and my education in difficult child issues progressed, the less guilt I had until I realized it was a waste of energy. There is no blame. There is only a child who is trying to make his way in this very confusing and demanding life. My responsibility is to him and what he needs.

I answer to no one but my God, my husband and myself and not necessarily in that order.

I take parenting very seriously and made many sacrifices (as I should) to help difficult child and easy child for that matter. No justification and no guilt.

When faced with a dilemma, I ask myself "what does my child need?". It sets the direction every time. Keep your purpose pure. difficult child. Let what other's think be of very small consequence.

If you are so inclined, proposing help for the young church members who are special needs so that they too, can learn their faith would be a wonderful mission for your education dept. of your church. Not sure how one does that but it's a good way to lead the way in being a warrior mom.
It won't be long before you will be a full fledged General in our army of dedicated parents helping their children without shame, guilt or making due.
Hugs.

 

[Marguerite]

If you are so inclined, proposing help for the young church members who are special needs so that they too, can learn their faith would be a wonderful mission for your education dept. of your church. Not sure how one does that but it's a good way to lead the way in being a warrior mom.

It is a very good idea - but as with any organisation that wants to help but whose volunteer army often don't have a clue or any training, YOU will need to be there on call to guide them, from your own knowledge as a Warrior Parent. If it works, you will have turned a possibly negative experience into a positive one, and for many more than your child.

WHatever we do for our children in this way is a major investment in their future.

Marg