Now What? 10 things you should know about being a special needs mom

Working through receiving a diagnosis for your child, regardless of if the diagnosis comes in-utero, at birth, or later in your journey of parenthood, it's a tough pill to swallow. It's been 4 years since Brother Baer's first diagnosis (Which has changed about 10 times) and 3 years since Little Baer's. So many people had advice, but most of the advice in the beginning made me feel worse. So, I'm sharing this for all you new moms out there. Here is some real life, special needs mom advice to get you through your diagnosis. Regardless of what diagnosis that is.

1. Be sad. It's ok. Be upset, and cry and let it out. Mourn for that "life" you thought you were going to have. And don't let anyone tell you that you shouldn't be sad. It's your right. And that's ok. You will need strength in the future. For now....be sad

2. Don't play the guilt game. Don't go there. It's not your fault. You didn't do something to deserve this, mostly because (as you will see) it's not a punishment. Something funny about me and all my "special need mom" friends...we are all just plain old moms. But we are all good moms, good people, and none of us did anything to be punished for. And again, I'll say it's not a punishment.

3. Don't play the "What if" game. What if's will hurt you. Seriously....What if the Zombies really do invade this year? What if the world ends? What if's will be your downfall. Just take things day by day and don't worry about the what if's. We all have them. Every single person. Regardless of special needs or not...NONE of us have a gaurantee for tomorrow. So.....Just live your today.

4. Talk about it. Talk about it and find support. Searching out and finding a support group always seemed strange to me. Support groups are for people with problems....right? And I didn't have a problem. Or at least I didn't want to think so. But honestly, support groups are important. Finding others that have something in common with you and your journey can help. It's never to early either! You may feel a little weird going into a group you don't know, with strangers...but I promise you us special need moms are totally cool! :) And we love new moms!!

5. Realize VERY early that it's not as bad as you think. I can remember crying buckets of tears thinking my life was over. That I would NEVER be able to do it. And I wasn't strong enough to handle it. But no one ever told me about the amazing things. The beautiful things. the things that come along with special needs....the small things. The flowers they sniff 100 times because they love them. The fact that Little Baer's smile can light up New York City. No one ever told me the GOOD things I would have. That's another reason why support groups are important. THEY will tell you the great things. They will show you the great things (Their kids) and you will feel happier.

6. Grieve. It's ok. Go ahead and grieve. Grieve for that "Italy" life you were going to have. And don't let people tell you it could be worse. Blech....I hate that. Of course it could be worse. But that doesn't help you. Let yourself grieve. And let your partner grieve too. Another key here is to remember that men process the steps different then women. So, if you're further along in the grief process, that's ok. Give him the time!

7. Don't take on too much information at once. I seriously was planning Little Baer's education when he was about 2 months old. LOL Seriously....Just love them and learn as you go. The time will come for each important decision. But don't try to make them all at once. You will make yourself crazy. You don't need to plan for when they are 10 yet! (unless they are 10...then get busy!)

8. There's nothing you can't handle. In the future. I promise you that you will find the strength to get through things you never imagined you could. You will do it and you will find the strength, mostly because you have no choice. But, you will do it. And will be a better person for it. You will sleep in hospital waiting rooms, and you will hold your child with 20 wires coming from them if that's what you have to do. You will. And somewhere in the darkness of those days you will find happiness. Even in the worst times there will be good times. Smiles, goals, peace. It will come.

9. Don't be bitter!!! This is important. Don't be bitter over people who don't have medical issues with their children, or don't feel bitter about your friends kids who are talking and walking before yours. Just relax and love YOUR life. Don't compare it and don't be bitter. Some of the meanest people I have met are moms who are bitter over their lives. And it's a sad thing to see. Don't let that happen.

10. Enjoy your life! And enjoy your child! Regardless of what the diagnosis you receive I will promise you that your child will bring you so much joy and love that it will all be worth it. Enjoy the days and nights with your child. Love your baby, love your child, and I promise that someday soon you will sit back and wonder....why you were so sad. Life isn't that bad.

And finally I just had to say I had to share the picture of little Baer...just because I think he's totally adorable. ;)

Finally! Answers!!!

It's been 6 years and 10 months since brother Baer was born and I knew there was something wrong. It's been 4 years and 8 months since we received a "diagnosis" and Finally Finally Finally! Today....I had someone really listen. Really diagnosis and Really give me answers.

Autism. I already knew that of course. And probably most of you do to since I say he has it. But to hear a Dr say it. To hear the professionals say it "without a doubt" not a rule out diagnosis. Not a secondary diagnosis. But that IS the issue. It felt great to hear. Great only because I already KNEW that was the issue. The school knew that was the issue. The TSS's and BSC's we have worked with told us that too. So did Family Based Services. But I had yet get a Dr to listen. Really listen and take note. To watch him and really learn about him.

Funny thing is I used to think the diagnosis meant nothing. I will tell you now my dear friends. I DOES matter. The kind of services and the kind of treatments and supports are depending on a proper diagnosis. And for years now we have had the wrong one. So therefore I fought and struggled for the right services. I have read enough and researched enough to know that Brother Baer did not have a mood disorder. He was not Oppositional Defiant. He did not have ADHD or Expressive Language Disorder. They were diagnosing symptoms of the Autism. Not the actual Autism. I struggled and fought for this to give him the RIGHT services because as a niave momma almost 5 years ago I said I didn't care what they called it just help me. Well....It matters. It really matters. So take that from my experience. Trust in what you know and what you believe and make someone listen to you. I did have a Dr "give me" a PDD-NOS diagnosis about a year ago to appease me. And really, he said that at the time. I wanted to send William to a summer program for Autism, they said it had to be a diagnosis. So....The Dr granted that to me. To appease me.

Oh and another thing.....Bad Parenting. HA! What a joke. After being told by countless Dr's that I needed to adjust my parenting style....

I was told today that the only thing "bad" about my parenting style was that I had "trained" Brother Baer so well the past 5 years on "how to act" and "how to interact" that he was programmed correctly for social interaction. Programmed responses from years of his momma Baer teaching him what to say and when to say it. Years of telling him to "look at me" and years of telling him how to make a friend or how to be a friend. And now....Unless you care to know or care to watch and listen you will see a well adjusted child who can make eye contact and speak to you in context. So then your only thought is....he is "bad" and since the Dr's only see him for 10 minutes at a time brother Baer can behave properly for those 10 minutes. So they say he needs a tougher mom. He needs more rules. He is "bad"

Well He's not bad, he has Autism.