Jackson's initial evaluation

We have been going through a rough time at our house. Our quiet (doesn't say words) 2 year old has started having raging fits. He is frustrated. We can't understand him. He was always a beutiful baby, really big, and really behind. The Ped told me it was his size and he would be caught up porbably when he was two. He is solemn, ignores people including other children. He loves his carseat Anyway about two months ago my world came crashing down. The doc says we have waited long enough, something is wrong and he needs to see a behavior specialist. They also called Babies Can't Wait. I have had therapist coming in and out of the house. At his intial evalutation they think it could be Pervasive Personalty Disorder or Autistic Spectral Disorder. My head is still spinning. It will probably be 4-5 months and many trips to Savannah before we get a diagnosis. My 15 month old girls I keep are devolpmental ahead of him. Meanwhile, the BCW therapists will be coming to our house to help him (and me to understand him) I think what set me off today was DH's cousin called. Her little boy was 18 weeks premature and was born 2 weeks after Jackson. She just kept going on and on about how much farther ahead Weston is than Jackson and I just sat there and squalled. Weston is potty training and saying two word sentences and jumping. My little boy will not say Mama. I am so afraid for him. I keep telling myself there are many more worse things out there but you never think it is going to be your child. I just want to keep him at home and protect him from all the people whispering behind their hands. I;m sorry everybody, I just had to get it out. (My DH is a basket case right now, his GF is dying, his DAD died last year from Brain Tumor while he was deployed to Iraq, I just don't want to unload on him.) Does anyone know someone with either of those disorders?

While I have not personally gone through this, my job prior to this was to work with children diagnosed with Pervasive Developmental Disorders (specifically autism) and their families. It is a huge blow, but these are great times for children with PDD - there is tons and tons of $$ being put into interventions and research, and really really lots of hope for great outcomes. Most of the kids I worked with made HUGE strides, and especially with you finding out so early, that is great. Let me know if there is any info I can help you with - obviously I am a bit Canadian based, but still...
Hugs to you, it is tough to hear something like that, but great that you were able to get on it so early.

Wow, I bet you have alot of info on PPD. I know so little about it I don't even know what questions to ask.

arly1983 said:

Weston is potty training and saying two word sentences and jumping.

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I'm sorry I don't have any personal experience to convey, but I do want to mention that Weston is probably ahead of many two-year-old boys if he's just turned two and is potty-training and saying two-word sentences (at least, he's ahead of where my two boys and most of their friends were at two years.) I know if they are cousins, it will be hard not to compare them, but please know that Jackson is not that far behind the average two-year-old boy, at least in my experience. It's great that he's already getting therapy and that you're working toward a definite diagnosis. Hang in there!

((HUGS)) Arly!

I know this is a difficult time for you right now, but, looking on the bright side, as previous poster said, there is quite a lot of research and information out there for PDD/ASD now, and with Jackson being evaluated/diagnosed so early, he will get the best possible interventions for him.

My mom works with PDD/ASD kids in the public school system and loves her job. She tells me about the progress each student has made, and it amazes me sometimes. I've volunteered and met a few of the kids, and they are unique and funny and sweet and DO make progress in their own individual ways.

Stay strong and positive! Maybe join a few support groups (I think there's probably some through Yahoo groups; I used to be a member of a few for sensory integration dysfunction), bookmark some websites for future reading, keep a notebook of any questions or concerns or feelings you're having, so you can quickly look them up to discuss with doctors or support people.

Vent away here anytime.

trailrunnermom said:

I'm sorry I don't have any personal experience to convey, but I do want to mention that Weston is probably ahead of many two-year-old boys if he's just turned two and is potty-training and saying two-word sentences (at least, he's ahead of where my two boys and most of their friends were at two years.) I know if they are cousins, it will be hard not to compare them, but please know that Jackson is not that far behind the average two-year-old boy, at least in my experience. It's great that he's already getting therapy and that you're working toward a definite diagnosis. Hang in there!

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This is worth quoting so it's read again. Weston IS ahead of other just-turned-2yos. Most just-turned-2yo's, in my experience, are not potty-training yet. My girl didn't train until closer to 3. She was speaking clear 2-3 word sentences at 2, and even more by 2.5-3, but IME she was advanced with speaking; lots of my friends' babies didn't put two words together until closer to 3.

Just to remain positive, look at the bright side, you know what is wrong. You can get Jackson the help he needs, and he wont have to go through life frustrated and feeling alone. It is great that he has wonderful parents like you and your DH that are willing to get what he needs and help him. Look at it as a great chance to bond with your son and learn more about each other. I know that it will be hard, and there will be alot of bittersweet situations that will make you want to laugh and cry all at the same time, but with help and support both of you will get through it. I admire any parent that has the guts and strength to take a problem like this head on and get what their child needs.

I personally believe my nephew is autistic, and his mom does nothing. She just says hes shy. He doesnt talk (hes three) he avoids new people (he will go sit in another room) and he is incessantly rocking back and forth . So know that you a great mom doing everything possible to ensure that your child is getting what he needs. If you ever need to rant (or rave ) you can always PM me. My DD doesnt have a personality disorder, but she has her share of medical ones, but I can try to relate. HTH

Some sites we recommend to parents - www.firstsigns.org, www.autism-society.org, and www.bbbautism.com. Just keep in mind that there is a TON of mis-information out there on the net regarding autism, and pdd. You need to be really careful and critical of what you are reading...feel free to drop me a pm if you want - hth

((((HUGS)))))

In my other life, before kids, I taught in a preschool autistic program. Well, sort of, I got pregnant that fall and ended up being on medical leave a good portion of the year. I don't do pregnancy well. Before that, I taught 5 years in a classroom of severly multiply impaired children.

I know there is a lot of research on PDD these days. Early Intervention is very helpful. I'm not big on general preschool, but for special needs it makes a huge difference! Many have found dietary measures help. I've heard of people using a gluten free/dairy free diet as well some who have used Feingold. This doesn't work for all, but it is realatively easy to try and doesn't hurt anything.

My middle dd had severe reflux and developed a swallow disorder as a result of the reflux damage. This led to uncontrolable asthma in her first 2 years of life. It was so hard to do doctor's appointments and therapy, but we got through. She had feeding therapy, speech therapy and occupational therapy. She no longer has her speech/language disorder but she still struggles with sensory issues. Before age 4 1/2 or so, she looked like she was probably was on the autism spectrum. She no longer looks that way however, she has come such a long way! She is still quirky and likely always will be.

I well remember a time when we wondered if Annika would ever talk, and now we can't shut her up, lol.

I know it is hard, but try not to get too worked up. It is way too early to tell what the future holds for your ds. I'm glad the therapists are coming to your house. That was so much easier for me, when we had home therapy. Don't fall into the comparison thing. There are so many differences between kids at this age. My oldest dd, who is very bright and learns by osmosis, didn't potty train until nearly age 3. My middle dd, is also bright, but has to work at learning. She potty trained at just past 2. Potty training has nothing to do with intellect. And intellect doesn't necessarily mean one will have success in life. I firmly believe that those who have to ovecome obstacles will, on the whole, do better than those to whom things come easily.

rlsadc said:

I personally believe my nephew is autistic, and his mom does nothing. She just says hes shy. He doesnt talk (hes three) he avoids new people (he will go sit in another room) and he is incessantly rocking back and forth . So know that you a great mom doing everything possible to ensure that your child is getting what he needs. If you ever need to rant (or rave ) you can always PM me. My DD doesnt have a personality disorder, but she has her share of medical ones, but I can try to relate. HTH

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This sounds like someone I know! Her son was extremely hard to understand, didn't really want much to do with us, has a one track mind and more. We were worried somewhat. Her FIL said that something was wrong and they needed to get him help (this happened just before he was 4). They had him asessed, got him into speach thereapy (he had fewer developed words then a 2yr old) and the last time we saw him we couldn't believe the changes in him! They started with all this in October and we saw just a couple of weeks ago. We could understand what he was saying, he played with us and we had fun. I just couldn't believe the changes that were made in such little time.

I think the hardest thing would be admitting your child has a problem, but getting them the help they need is the best thing you can do! Good for you Arly for doing what you can and seeking out help, try not to let what others say bother you and vent to us all you need!

What a tough situation. I'm sorry you have to go through this. A woman I work with has an almost 6 year old that has some form of Autism. She refuses to have her officially diagnosed, since their recommendation upon diagnosis is medication (for her child, not all). This little girl will be 6 in May and is still not fully potty trained, she barely speaks, but will sing and remember every word to a song she hears on the radio, even if she hears it just once). It's crazy. She has a really tough time with her daughter. She truly acts more like a 3 year old, and unfortunately, looks more like an 8 year old. It's a tough situation.

But, there is so much emphasis and information out there on Autism now. I do think that it is the new "buzz" and a lot of kids are misdiagnosed these days. It's like ADD/ADHD was a few years ago. It seemed like any kid that didn't listen had ADD/ADHD and was put on Ritalin.

And everyone else is right - that child sounds very advanced. I don't know any two year old boy that is potty trained at 2. I know it's hard not to compare kids, I have a really hard time not comparing mine. My oldest was speaking full setences at 1 and was potty trained at 18 months. My youngest maybe says 5 words and no way will she be potty trained by 18 months, which is pretty rare anyway.

It seems like you're doing everything you can to get more information and do what's right for your child. Good luck with everything.

Hi Arly,
Everyone here has already given great advice. I second the recommendation of finding an online support group - you might have to weed through a few till you find one that feels right. I can't begin to tell you how much I appreciate the group of online friends I have who speak the same "language" (just like we speak carseatese on here) as me, we can talk without having to stop and explain everything (terminonolgy-wise), we can talk about something that might be part of our "normal" day that would shock the pants off someone else. ie. Rylan only had 43 seizures on Sunday (shocking to most people but those who know that his average used to be 250/day can put it into perspective).

I understand your frustration and your fear. Feel free to contact me if you like.

Your child is so fortunate to have you for a mother - someone who is doing all they can to get help, keep pushing, the early therapy is great. It isn't going to be easy, but you can do it!

My son was diagnosed PDD/NOS 18 months ago, at the age of 2-1/2. We started him with a speech therapist, which help alot, by the age of 3 he was finally starting to speak (he finally said Mommy around a week before his 3rd birthday, I can totally understand). We were also referred to an occupational therapist, who worked with him on many of the sensory and behavioral issues stemming from the PDD. Working with the therapists also has helped him in opening up to others. He did not potty train until this past September-October (almost 4), but since doing it has done well, with few accidents. Right now we are trying to decide our next course of action.

We tried a preschool type program, since "socialization" was recommended, but if you do this, make sure that he is actually being encouraged to participate. The preschool we tried did not, and he would always be playing alone, so I pulled him out. Although my plan is to homeschool him in the future, the state of Florida, where we live, offers a 4 year old voluntary preschool program (1/2 day), which we are considering putting him in next school year for the experience. We have found that although he does have some delays, he is more advanced in many ways as well.

He has come so far in the last 1-1/2 years, more than I even dared to hope, and although there is still a long way to go, we have been happy with the improvements he has made thus far. Feel free to email me if you wish to chat or vent, I would love to hear from you.

Amie

Arly,

I am so sorry to hear that your family is experiencing so much at one time. That must be exhausting.

If your son does indeed have a PDD/ASD, you are getting help early, which is spectacular. Children with PDD/ASD usually respond best when intervention is put into place at an early age. I am so glad that you are looking into this now.

I am just going to state it one more time, so that it is well understood: Weston is WAY ahead of the average if he is just now two years old and is potty training. He is also ahead of the average if he is speaking in two-word sentences. I wouldn't expect a just-turned-two-year-old to be doing those things.

Best of luck to yoU!

scatterbunny said:

This is worth quoting so it's read again. Weston IS ahead of other just-turned-2yos. Most just-turned-2yo's, in my experience, are not potty-training yet. My girl didn't train until closer to 3. She was speaking clear 2-3 word sentences at 2, and even more by 2.5-3, but IME she was advanced with speaking; lots of my friends' babies didn't put two words together until closer to 3.

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Yep, I agree I also have a sneaking suspicion that the 'potty training' she's refering to, is basically timing it so that her son is ready to pee when she presents the pot. He is NOT asking to go potty, holding it until he gets there, nor pulling down his pants, nor wiping... basically nowhere near a real concept of being diaper free by any means If he is, then alert the press, the kid's a biological genus! Kind of like baby 'sleeping through the night' really means 4-5 hours of solid sleep, not 9 like us adults need


DD absolutely shocked dh & myself last night before dinner. She comes in all happy and declared that she went potty all by herself! She proudly did it again 20 minutes later to show mommy. And yes, she goes into the bathroom, climbs up on her stool, arranges her clothes, does her business, wipes, then pulls everything back into place after flushing . She comes out of the bathroom afterwards and asks for hand cleaner. She's 3 1/2 on 16 March and has been diaper free in the daytime for just over 6 weeks! Now that's potty training, imo We've had an occasional accident, but I show smiles and encouragement, so she's kept on going.
Before mid-Jan, she demonstrated absolutely no ability to hold her urine long enough to make it to the bathroom. She obviously matured enough to do so

I have 2 friends who are working with their 2 1/2 year olds on potty training. They're getting frustrated because at 2 years old, their children (boy and girl) were perfectly behaved on the potty. They'd wait eventually and something would tinkle out soon. Now it's taking longer and both kids are fighting the whole process. I read somewhere that no matter how early parents start with potty training, reliable control during the daytime (on average) is not reached until 3.5- 4 years old. So relax and don't worry about the PT situation.

Now about the 'raging fits', high frustration, & 2 words conversation ability. Taking away the evaluator's pronouncement of PPD, those 3 points describe an average just-2 year old boy to a 't'.

It's possible that he's frustrated because he cannot communicate with the little vocabulary he possesses which sends him into a meltdown. My dd was VERY VERBAL at 2. She could use 3 word phrases and was very clear to hear, yet she would get so angry because her message wasn't getting through and that would make her harder to understand which would increase her frustration level. We saw some horrendous meltdowns-- "Dr Phil-Help us" type

My life saver was the "Happiest Toddler on the Block" book. I learned to repeat what she was trying to say to me. Eventually, she'd calm down and we'd work through her message. So she learned more words while I was talking with her + self-soothing her newly formed nerves. Check out that book from the library and it might help your situation. (I also placed her somewhere safe and completely ignored her until she calmed down or walked out of the room, so the two in tandem were a solution for us.)

It is entirely possible that your son's size and quick growth has slowed other development. But he could be just going through a phase where he's watching the world, but not wanting to interact. I saw on 60 minutes where a study was ongoing trying to diagnose Autism at the earliest possible age. The 2 most tell-tale signs were:

1-- mother or someone going behind the child, calling name 3-5 times, with a failure of that child to turn around or look.

2 -- playing with a new object while the child looks on, then handing it to the child to examine. Lack of interest demonstrated that there might be a problem.

But the difficulty was that children grow. Whether or not a child passed at 18 months did not seem to predict what he would do at 2 or 2 1/2. If I remember correctly, 3 years old was the earliest they could reliably say that there was an autism issue. I could be off though, sorry.

All I'm saying is relax, don't feel guilty, + encourage lots of verbal interaction between yourself, and your son. His brain is growing and learning at a rapid rate, so he could grow out of this with enough stimulation.
Don't keep him isolated because of worries about whispers behind hands. If Joe Public can't handle it, tough Even if he just watches other kids, it will help keep him thinking.
My dd was an extremely reserved 18-30 month old. She would remain by me a good 7 or 8 times after we visited somewhere with kids before she'd venture out on her own. Now she just explodes in eagerness to leave my side. No one can believe that she used to be very quiet and diffident towards other children.

I hope some of my ramblings help to ease your worries and make you feel a little better. There's always Hope and that doesn't cost anything But please, vent away anytime you need to do so.

I'm so sorry you are going through this! It can be very scary. I taught special ed and had many kids with asperger's, which is on the autism spectrum. As others have said, it is great that you are finding out this early, as I have seen kids progress by leaps and bounds when they get the right interventions at an early age.

What I never knew about autism until I had my own son, though, was that in some kids food plays a huge role in their difficulties. My son was on the road to being diagnosed when I remembered that somewhere in college I had learned about the Feingold Diet. We eliminated gluten, then caisen and slowly began to see a huge difference. My friend's son was also helped by the diet. It didn't make the autism "go away", but improved behavior and ability to communicate. It doesn't help every child, but I'm so glad we tried it.

I also have to agree with the others that Weston is not someone to compare your son to. My guess is his mom has her own insecurities and so feels the need to compare and, likely, exaggerate. The range of normal for 2 yr olds is HUGE.

Best wishes in your journey. You are indeed a strong mama and your son is blessed to have you- as you are blessed to have him.

Thanks everyone. We are very worried about him and hope for the best. Reguardless of diagnosis, he does qualify for a speech therapist with early intervention so that helps my feelings. Weston is not really potty training, he is just showing interest in the potty and imitating.(Don't tell his mom that) Its nice I can talk to someone. Getting it out has helped me sort through it all and put it in perspective.

arly1983 said:

Thanks everyone. We are very worried about him and hope for the best. Reguardless of diagnosis, he does qualify for a speech therapist with early intervention so that helps my feelings. Weston is not really potty training, he is just showing interest in the potty and imitating.(Don't tell his mom that) Its nice I can talk to someone. Getting it out has helped me sort through it all and put it in perspective.

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Rylan was interested in "potty training" at 18 months...I'd come around the corner and he'd be naked doing the sprinkler dance...if I remember it was about a 4 foot radius. I never really pursued it as I thought he was too young.

Arly -- I am a speech-language pathologist. Let me know if I can help in anyway.

My son has high-functioning autism (HFA), if that is what your son has (that's what PDD-NOS is, really), you're somewhat fortunate. HFA means some challenges, but your son can do very well with some interventions.

Do a web search for "mercurymom" - she is an autism expert and knows more about "alternative" therapies that WORK than anyone.

Also, read "Raising Your Spirited Child" by Mary Sheedy Kurcinka. If you could only have ONE parenting book, that's the one to have.