I've never felt so much pain.

[Samiam03]

My son got evaluated today for his delays...everyone said this would make me feel better...especially since he would be getting help. Instead I walked away from the appointment feeling sick to my stomach and angry with God. I thought it was just a speech delay but the way it seemed in the evaluation...it is going to be something more. We have to wait for the results now but I just want to curl up and sleep forever. You never think your baby will end up being labeled special needs...and you never expect how much it hurts. I can't stop blaming myself and thinking about what I did wrong.

I can't even look at Facebook anymore...all my friends keep posting about their kids milestones...and with my son he just seems to keep regressing.

 

[gezma]

I'm going through exactly what you are going through, my ds is nearly 19 months, we have no words, not walking, no pointing, limited understanding. He's been assessed and is delayed in every area. He's currently having speech therapy and additional help with his other delays. But they say it can all come at once, and he could just be lazy... So I'm just hoping and praying they are right..but you can't help and fear the worst.
Like you, I have friends LO's that are miles ahead of we my ds is, but then i look at my ds and think how chilled, relaxed, what a lovely, cuddly, affectionate son I've got, and how lucky we are, and how loved he is and that we will do everything we can to help him.
So I can't really offer any advice, but say I know exactly what you are going through xx

 

[Jeninpa]

My daughter did most of the physical milestones on time but she could barely be understood when she spoke at age 5. She was always such a sweet happy girl though,lol. We found out she had expressive & receptive language disorder & some neurological damage from a car wreck I was in when I was pregnant Luckily she has a high IQ, almost above average so that helps. She has remained in all regular classes & does well enough to make the honor roll. She is 16 now & I am so proud of her! Just love your child & help support them in every way you can & you never know what might happen! People seem to always give you the worst outlook but they aren't psychic! You believe the best will happen & don't give up

 

[sun]

It can be hard to let go of the person you always imagined your child would be and see them for who they are, whether they have SN or not. At a year I was beside myself with fear about my son's future, but so much can change - not only his abilities, but my understanding and appreciation of what an amazing child he is.

I have learned so much over the past 2 years and have been given lots of help and support, and as a result my son has done so well. It is hard not to compare, but I think it gets easier as time goes by. They are all individuals with their own personalities and develop differently. x

 

[peachymomma]

I have 2 special needs kids. When my son was dx with autism I went thru a grieving process for all the things he probably wouldn't be/do. I think thats pretty normal for parents to go thru. It's about accepting their dx's what ever it might be. And learning how to help them live up to their fullest potential. It is devastating when you first find out that something might be wrong. But you are not alone.

 

[Shezza84uk]

Sending you lots of hugs, my daughter has Specific speech and language impairment and its very hard to cope at the first diagnosis, but it gets better with time! I thought it was just speech delay also but I was told it was more complex after her assessment I promise you will find strength you never thought you had and will be his rock through this feel free to PM me if I can be of any support xx

 

[_Vicky_]

Big big hugs - Sam was delayed at 18 months in a few areas mostly gross motor. He had further assessment at 2 years old and had totally caught up! We are now heading towards his third round of assessments and I am getting the nervous feeling again.

I just keep telling myself that if he is delayed then he is still him whatever label they put on him he is still my beautiful boy.

It's hard and as parents we want the best for them - big hugs sweetie it does get easier xxxxx

 

[JASMAK]

Hugs xoxo. It is sooooo hard. It is OK to not be OK right now. This is a grieving process. I felt a mixture of relief, disbelief, anger, guilt...it was intense. I would be grocery shopping, or something everyday, and break down crying. I found the 'diagnosis' journey, the hardest, but here I am, 5 years later almost....and still feels raw at times. Be gentle on yourself, and make friends with those going through similar. Those milestones hurt....ALOT. A nice reminder of what our LO's 'should' be doing.

 

[JASMAK]

Hugs xoxo. It is sooooo hard. It is OK to not be OK right now. This is a grieving process. I felt a mixture of relief, disbelief, anger, guilt...it was intense. I would be grocery shopping, or something everyday, and break down crying. I found the 'diagnosis' journey, the hardest, but here I am, 5 years later almost....and still feels raw at times. Be gentle on yourself, and make friends with those going through similar. Those milestones hurt....ALOT. A nice reminder of what our LO's 'should' be doing.

 

[Midnight_Fairy]

dont know if this will help

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

[Lilicat]

My little boy is autistic too. It is easier for me though, my brother is autistic. When he has little my mother was told he wouldn't achieve anything. He is now grown up, when to uni, is married and has a great job. Due to this it is much easier for me to have a long term view as I have seen it from both sides.

Your son will still have milestones, his own ones and they are just as important and special. For example recently my son has learnt to copy me poking my tongue out at him which sounds like a little thing but it is great (eye contact, copying).

In the last few weeks he has learnt a few new words, to eat with a fork, to take his own trousers off and started the basics of imagination based play. Some of those I was wondering if he would ever do, particularly imaginative play.

I put on Facebook whenever he makes an achievement, he may be on a different track to most children his age but his achievements are just as important and I want to show I am proud of them.

He has had some regressions in the past too, the most notable being at eighteen months. It doesn't last forever and he will start showing you some wonderful new skills soon