Can I just vent and have a hug! UPDATE # 11 and Question

[faithsstuff]

my 25 month old ds is scheduled for diagnostitc eval in about a week.  I think I should be happy but I am so stressed.  It looks like ASD and that's o.k., with his severe speech delays, intensitiy, receptive speech delays and sheer activity level, I need some kind of parenting class.  Here goes the pity party:

-I'm exhausted, this lovely little boy hasn't slept through the night since the day he was born

-now that he's not an infant ppl are commenting when he has a difficult time, yesterday I gt really rude comments on his sensory seeking behaviour.  I was so shocked by the comment I didn't handle the situation well and there was a very long, loud meltdown

-dh got a new insurance plan through work and when I called the autism center with the new info I found out we have to pay the nearly $1900 out of pocket  (do I need to mention that we don't have that amount just hanging around)

-this week ds decided to stop talking and eating (again)

-I sprouted a cold sore the size of Montana

-Today I woke up with the flu and I just want to be left alone

did I mention I'm tired?  and I think I probably smell bad.  I love this child, but he needs so so much and I just hit a wall today.

[melissa17s]

Wish you felt better.  It is always easier to deal with the challenges when you are feeling good; try to find ways to rest and take care of yourself.

[QueenOfTheMeadow]

It sounds like my son at that age. it was exhausting, every.single.day. And the stress is certainly not helpful when it comes to your health. Maybe you could take some vitamins and supplements to boost your energy,immune system, and stress level? That really helped me during thos exhausting toddler years.

Hopefully the evaluation will be helpful to both you and your son. You'll probably learn a lot of things that you can do at home to help with some of the issues you are facing parenting a child with special needs. Also, they can probably give you a lot of information about support groups for parents and offer services that may include babysitting by someone who is trained to deal with kids with special needs! So, maybe if you can go into the evaluation with the thought that this will be helpful, that'll take away some of the stress regarding it.

[KCMichigan]

One of my DDs struggles w/ SPD and possible PDD_NOS dx. She is now 5 and it is SO MUCH better than it was at 2.

At 2, it was so hard to go out most places she got so overstimulated, seeking sensory input, etc. She also was so very very routine orientated.

Since 2- she has gained communication and coping skills. We went through 2.5 years of OT & PT (she has/had gross motor delay)- EArly Intervention and IEPs. 

Ignore the rude people- they dont know you and your family. It hard, but really there are people out there that *get it*.

Do you have someone that can give you a break? Some respite? A local ASD support group?

I hope you get the answers and support you need from the eval! Lots of HUGS!

[Emmeline II]

Originally Posted by KCMichigan 

Ignore the rude people- they dont know you and your family. It hard, but really there are people out there that *get it*.

This is true. In all the times ds had flailing tantrums the only people who actually said anything to me were trying to help; most of the time I didn't notice dirty looks. Perhaps it helped that I didn't act embarrassed, I just put on my stone face and contained ds as best I could and got him out of there as quickly as I could. Ds looked about 2 years older than he was until he hit 6yo, so I think people probably did make assumptions.

________________________________

Also, I would consider melatonin. There is the type that just helps them unwind and get to sleep and also a time release version; the former is widely available, for the later I would ask the pharmacies or find a brand and try to find what stores they sell to. It is typical for ASD and ADHD children to have problems with sleep. If you could get more sleep it would probably be a little easier to deal with everything else.

[gsmom]

Hugs to you mama.  I am sorry things are so difficult right now.  Sending peace and light your way.

[QueenOfTheMeadow]

Originally Posted by Emmeline II 

Originally Posted by KCMichigan 

Ignore the rude people- they dont know you and your family. It hard, but really there are people out there that *get it*.

This is true. In all the times ds had flailing tantrums the only people who actually said anything to me were trying to help; most of the time I didn't notice dirty looks. Perhaps it helped that I didn't act embarrassed, I just put on my stone face and contained ds as best I could and got him out of there as quickly as I could. Ds looked about 2 years older than he was until he hit 6yo, so I think people probably did make assumptions.

________________________________

Also, I would consider melatonin. There is the type that just helps them unwind and get to sleep and also a time release version; the former is widely available, for the later I would ask the pharmacies or find a brand and try to find what stores they sell to. It is typical for ASD and ADHD children to have problems with sleep. If you could get more sleep it would probably be a little easier to deal with everything else.

Jarrow makes a time released one. I can't remember the mg though.

I also wanted to echo that things did get a lot better after the toddler years. So hang in there!

[sbgrace]

I'm sorry. He's at a really, really hard age.

Melatonin has been wonderful for my son. He takes .25 to .5 mg and has since he was 3.5 (I so wish I had done it earlier). He'll be seven this week. It's good for many kids (and adults) for going to sleep. It's not usually good for staying asleep though. You could try extended release for that and consider dosing at first wake up too (or just before). Sleep deprivation makes it all so much more unmanageable.

Will they reimburse you for the $1900?

[BeautyforAshes]

I agree with the pp about the melatonin.  It has been a godsend with my 2 yr old daughter, who has never slept well.  My daughter needs a higher dose than many of the other children on here take.  I have recently tried the time-release with her, and it works great!  I would definitely give it a try, and don't be afraid to experiment a little bit with the dosing.  Sleep makes everything more bearable--

[oceanbluemomma]

Two is an exhausting age, I agree with everyone try to get breaks if you can.  Even if you just leave to scream and sleep in the car, get out of the house if you can - respite is a great option, even many churches offer this and you don't have to be a member to take advantage of the help.

Does he fall asleep fine but wake in the night? About what time?  Melatonin will help you fall asleep but it doesn't keep you asleep, there are different supplements for that.

Not eating - how is he pooping? Give me the dirty detail list - that will help.

What does he enjoy eating?

I believe Autism is medical and not a checklist of characteristics-it just doesn' t seem to be that simple.  If you go to the doctor and tell them you are having mood swings, not eating, not talking much, etc...they run all kinds of blood tests, urine, stool, xrays, etc... Why don't they do this for each child who has these symptoms? It makes sense to me to do those things.  We did run blood tests - found out he is allergic to a ton of things, this level and that level were off, etc... it was crazy.  We addressed those issues and he is on his way to loosing this diagnosis=he can carry on a conversation, answer questions, play with others, doesn' t scream or have fits of not eating or having to have it his way.  His sensitivity to different noises disappeared and he slept - a good sleep, finally.  This is just my child's journey but I am not alone.

Hope you are feeling better:)

Warrior Mom to Nick and 3 other Amazing kids

[faithsstuff]

THanks mamas for all hugs and support!  I'm over the flu, and my cold sore (as my hubby put it) looks like the Hawaiin Islands   so things are improving.  We had to cancel his visit with the autism center.  I am so frustrated, we've been on the waitng list for months and dutifully wading through all the other appts and paperwork.  Now we're on the waiting list for a center in Alabama and they think they can see him in May.  It's sliding scale and something we can afford.  the nearly 2000 bucks at the other center wouldn't be reimbursed or go toward out deductable, we  just couldn't swing it.  I'm not even sure that ASD would be his diagnosis, but something is 'off' and we need help.  I have to look into the melatonin, he's down to only waking up once a night but he doesn't fall asleep until around 11:30 and wakes up for the morning by 6. 

I do have a question for some of you mamas.  There's something strange that he's doing that I don't know if it's worth mentioning to the dr or if it's just developmentally normal.  As he gains words (well mimics)  his behavior regresses.  We stopped potty training, his texture aversions are crazy again, he can't tolerate water touching his body and he has many more destructive meltdowns.  Our good days are fewer and I can't seem to calm him or figure out his sensitivites like I used to.  He even wants to be carried more and has stopped using playground equipment (he was an early climber and could climb a ladder before he could walk).  what is going on with my baby and how do I stay sane?

[NightOwlwithowlet]

First of all, your son should be eligible for early intervention provided by the state.  The evalaution and services are free,  If you are already getting EI, disregard this.  

My son was diagnosed with PDD-NOS when he was younger.  I could have posted much of the same things at that age.  He didn't sleep through the night until he was three and a half years old.  It was only after we realized he had food, mold and dust allergies and treated them that he started sleeping through the night.  

He had screaming, foot banging, temper tantrums on a weekly, sometimes daily basis until his receptive language kicked in.  Then it was like a light switch went on and even if we couldn't understand him, he could understand us.  I can still tell you the time, place, and day when I said, "We are going to feed the ducks.  We are no going home."  He stopped screaming and said, "Okay, Mama.  Ducks,"  I could see him grinning in the review mirror.  It's still my own every day miracle that changed our lives. 

Regarding regression in one area while progressing in speech.  This was my son's pattern, it was one step forward with speech and two steps back with behavior or toilet training or sleep followed by a big leap forward.  For years, he repeated the pattern every three months, two to three weeks of hell followed by two months of progress.  It was so predictable, his preschool teacher and sitter would notice.  Even now at eight years old, we still see times were he's making huge progress in one area, but starts having trouble or plateauing in others.  He explained as his brain is trying to down and intergrate all the new information.  

The biggest things for my son were speech therapy, OT, treating his allergies, daily play therapy, and time to mature.  It will get better for all of you..  

[Linda on the move]

Originally Posted by faithsstuff 

THanks mamas for all hugs and support!  I'm over the flu, and my cold sore (as my hubby put it) looks like the Hawaiin Islands   so things are improving.  ....

 As he gains words (well mimics)  his behavior regresses.  We stopped potty training, his texture aversions are crazy again, he can't tolerate water touching his body and he has many more destructive meltdowns.  Our good days are fewer and I can't seem to calm him or figure out his sensitivites like I used to.  He even wants to be carried more and has stopped using playground equipment (he was an early climber and could climb a ladder before he could walk).  what is going on with my baby and how do I stay sane?

I get cold sores when I'm freaked out about my kid too! What an odd thing to have in common. They are totally related to stress.

Anyway, I've seen some of the other kinds of things with my DD too. When she starts to progress in one area, another area goes backward. She takes awhile, and then re-integrates the old skills with the new. It's a slow process and in the middle it really looks odd. I think it is very mentionable to the doctor. At our last eval, I made a nice typed up list with bullets and subheadings to highlight my concerns.

(BTW, my DD is 14 now and has had lots of dx's. when she was little her main dx was PDD-NOS, now that she is big it's Asperger's)

How to stay sane is a very big topic. I've spent time in therapy dealing with my emotions around having a sn child, and I do a lot of yoga. A Lot of Yoga.

And 2 is a very rough age. Things really will get better.

[Linda on the move]

one other thing -- I'm over the rude people. At this point, I think that having a sn child is a wonderful way of sorting out other people. There are those who get it, and those who are busy judging and feeling superior. It says more about them than it does about my DD or about my parenting.