title: Congratulations it’s PDD

A mothers intuition. That feeling in your gut that something isn’t right. That thing that you try to brush off but it still keeps you awake at night. It should be trusted, not trusted all on it’s own, but taken into account. When dealing with your intuition, have the grain of salt close by in case you need it, but don’t take it right away.

Is that normal?

A mothers natural state is guilt. Guilt that you couldn’t breastfeed exclusively or that you took pain medication at birth. Guilt that you didn’t wash those socks before you put them on your toddler. Guilt that your child had too much candy 3 days out of the last week. Guilt that you are not perfect and will inevitably damage your pure, perfect child.

Then there’s the Second Guessing. You think such and such might be best, then you wonder. You think you are noticing a behavior that is abnormal for a child this age, and then you wonder. Is that normal? Does the neighbors kid do that? All kids eat strange things at some point. All kids throw tantrums. All kids mimic Movies and imagine they are a puppy sometimes. All kids are afraid of loud noises… but not like this, this is different.

Giving it time.

If you notice something unusual about your childs behavior (that is not alarming enough to warrant immediate evaluation) it’s wise to give it time. Kids go through some strange things as they grow and develop, they often grow out of abnormal behaviors. That’s the hard thing about this sort of problem, especially when you are aware of it early on, you often just have to wait it out.

That doesn’t mean you shouldn’t be proactive, don’t fixate on the issue, but offer natural alternatives. If the child is sensitive to temperature, allow them to wear less or more clothes as they are comfortable, allow them to choose their clothing, offer them a cool washcloth in summer if they get hot easily, offer some mittens or gloves when out if they are sensitive to cold. If the child is sensitive to loud noise, get down on their level and help them with their fear/anxiety, teach them to take deep breaths, allow them to make noise to comfort themselves, offer them a hat to cover their ears or even headphones. If the child has a need to chew, offer different textured things that are safe to chew (we use straws a lot as well as a clean washcloth and different textured teething toys – yes, even at almost 5)

Use this time to talk to others about the behavior you’ve noticed. Teachers, childcare providers, friends and family who know the child and others who have children with similar behavior. Do some reading, but again, don’t fixate and don’t allow your fears or concerns or even a diagnosis to change the way you see or behave towards your child, so they might be a little different, so you might have to treat them a little more delicately (or with more pressure even) that’s ok, the important thing is to be aware and conscious and treat them as you would any other child as far as possible.

Of course the severity of Autism Spectrum Disorders dictates exactly the approach you need to take and you have to assess that as a parent and with the childs Dr, my experience and thus advice, is on the higher functioning end of the spectrum, some of this article may not apply to the more severely affected.

When to do something.

What we went through:

Maybe it’s just a phase. She’s 3, 3 year olds are just weird by nature. We’ll give it time. I’ll offer safe alternatives. She likes to chew? I’ll give her miswak! (a type of stick used in the middle east for cleaning teeth)

Dr says a phase lasts max 6 months, after that, it’s more than a phase. She’s not growing out of this, it’s been at least 18 months since the normal age for this behavior. The miswak isn’t working anymore. A 3 year old should know better than to put glass in their mouth.

We need some outside help.

Support and Lack thereof.

Having a strong support system of people whose opinions I trust was key to getting the help needed for our daughter. I was able to bounce ideas of my sister who has a degree in early childhood development and a strong interest in Gifted children and children on the spectrum. She was able to pass on what I had told her to Special Education teachers she worked with who were able to give their take on the situation. I also had other friends and family who gave me wonderful advice and sincerity, some simply gave me support “you’re doing the right thing!” which is invaluable on it’s own.

Some family found it hard to accept the conclusions we were coming to, that too I have to respect, and even appreciate, it helps keep things in perspective, self doubt is not helpful, but questioning yourself sometimes can be. Still, it’s not easy to have to fight for the support you need from those closest to you.

Unhelpful Dr’s.

It was our family Dr who initially validated my concerns, having seen the advanced language and art skills our daughter exhibited in conjunction with the sensory sensitivities I described and the lack of eye contact she noticed as well as the anxiety from Madam that we dealt with at every Drs appointment. The Dr brought in their general psychologist to talk to us about the possible cause and significance of the things I described. I had an appointment with the 2 of them, on my own, without my daughter, and was told that I really just needed to be a firmer parent and that there was no need for further evaluation.

I was almost certainly looked at as “one of those mothers” when I mentioned strong family tendency to have spectrum traits and my family and I concluding I am almost certainly Aspergers. I was later given some important advice, keep that part to myself, at least at first.

I was given the “you can read too much, you know” line that I despise so much, and I despised it because I knew the reading had happened because of the concerns and not vice versa, no, I had not gone down that road this time.

I moved on after that, we’d do it on our own for a while, Ok it’s been over a year, but she’s small, there’s still plenty of time to outgrow these things.

Then she tried to eat some glass and chewed through a live electrical cord.

Enough was enough and I contacted the Dr to get the referral, even though the Dr wasn’t a great help in taking my concerns seriously, she lent me her ear and opinion several times and always left the decision for moving on with the evaluation or not, completely up to me. Not a bad Dr, just one who hadn’t dealt with a child like this before.

A Breakthrough.

Childrens Hospital, lovely Dr. I was listened to, heard out, validated, respected as not an but the authority on my child and not only told that I was right all along, but that I should trust my intuition because I was spot on. Most importantly, my child got to know the Dr and spend time alone with the Dr, this wasn’t all based on what I had to say.

It’s not a good feeling to hear that your child has a neurological disorder, it’s not a good thing to have fears validated. It is in the same breath, wonderful to have your intuition as a mother validated, your opinion as a mother respected and for a Dr to speak to you as a peer in your childs care.

This sort of Dr experience is unfortunately rare. It can take years and much heartache to find a Dr who is willing to work with you that way and even willing to entertain a change of opinion when you disagree with something. It is unfortunately rare to be respected and heard. We may not be called ‘refrigerator mothers’ anymore, but there is still a lot of blame defaulted onto the mothers, we are still, in many cases, guilty until proven otherwise.

Congratulations, it’s PDD-NOS!

Pervasive Developmental Disorder – Not otherwise specified. In our case more than likely Aspergers but because of age, that particular label isn’t used by this particular Dr. all Dr’s or clinics approach the issue of age slightly differently.

PDD is another name for the Autism Spectrum, it’s an umbrella term for a collection of developmental disorders including Autism and Aspergers.

So now we can move on, now we can share ideas about how to help this little lady through her anxiety, sensory sensitivities and other difficulties. Now we can provide her with resources to help her better understand the world around her and make the most of the immense gifts she was given, now we can better understand her ourselves and react to her with more empathy and more productive responses to what she is experiencing.

Learn more about PDD on Wikipedia.

PDD on Childbrain.com

PDD on the Autism Society of America website.

Autism Speaks’ page on PDD-NOS

Understanding and Awareness.

Remember that the purpose of getting a diagnosis is to get help and you only need help if the behavior is affecting the child’s or family’s quality of life. If the child is quirky but there are no developmental issues, safety concerns or detrimental affects for the child or family, you may not need intervention.

What I did and what I have told other families with concerns to do, is start making a list of the behaviors that concern me (eg. chewing, sensitivity to sound), the behaviors I find unusual or significant but not necessarily a concern (eg. lining up toys, scripted talking) and lastly the gifts and talents (eg. incredibly advanced in language and art) as these are positive areas we want to build on and work with but not areas of concern. Keep an eye on the behavior, update the list every month or 2, and bring your concerns to the Dr if you feel it’s necessary.

If you don’t get the response you want, find another Dr who will listen. This doesn’t mean find one until they tell you what you want to hear, it means find one who will listen and treat you as a peer.

Autism and Aspergers are not fashion statements. They may not always be visible, but they are very real, often painfully so.

Help us raise awareness about the Autism Spectrum by wearing Blue on April 2nd, and becoming a fan of Blue Hijab Day.