and then, there was a diagnosis.

Where to even begin...

There is good news, so I will begin there...  Keegan is not autistic.  Both doctors shared a resounding "NO" when Steve & I mentioned it as a concern.  We explained that neither of us felt it was the right diagnosis but that it had been mentioned so much over the past year that we couldn't ignore it.  Both doctors agreed, Keegan is not anywhere on that spectrum.  I'm not sure that anyone in the room knew what to do when I burst into tears, including ME.  I didn't realize that it would hit me like it did...  I just kept thinking about that lady at the grocery store, and how I had let her affect me these last few months...  But it's over now.  We can put this mountain behind us and focus on the long trail ahead.

For months now, I had been focused on something else, and had done tons of my own research.  I have a friend, a fellow Momma-Bear, with a boy much like my own...  Sarah and I exchanged a few emails over the summer about Sam, she also shared Sam's progress on her own blog.  To say that it gives me hope, is completely understated.  Sarah, thank you for your support.  I'm going to think about you and Sam any time I feel sad or frustrated... 

Keegan has (finally) been diagnosed with a severe case of verbal apraxia, and also general dyspraxia over the rest of his body.  What this means is that Keegan's brain knows that it wants to send words to his mouth, and movements to his arms and legs.  But somewhere between his brain and his body the signal gets "lost in translation" so all that can happen is a sound, and body movements that are clumsy and not executed well... 

It was explained to us that this is similar to what happens after someone experiences a stroke.  They may lose functionality with certain motor skills or in the muscles of their face/mouth, affecting their speech.  And once they have lost it, they do not ever get it back completely.  But they can strengthen the skills that they DO have through intense speech therapy and various other types of occupational and physical therapy.  Keegan's case is similar.  He may never be able to speak or move as precisely as he would like to - we will have to wait and see.  In the mean time, we have to get a plan together for vigorous therapy (more than once a week), we have to visit a geneticist, and we have to have a 24-hour EEG done...  It was also suggested to us that we also devise a plan to give Keegan alternative methods of communication, even exceeding sign-language. 

It's a strange combination of feelings that I walked away with yesterday.  Validated, knowing that my gut has been right all along.  Happy to have an answer and finally a sense of direction.  Scared about all the battles we have yet to fight with teachers and insurance companies and doctors.  Hopeful that he will continue to progress and thrive.  And, of course - absolutely devastated over the news itself. 

Here's a little snip off a website that explains it pretty well...

As a result, even though the child knows what he wants to say, he cannot say it correctly at that particular time. Sometimes he cannot even begin. Either the wrong sound comes out, or many sounds are left out all together. At that particular time, the motor plan is not accessible. These errors are not under the child's voluntary control so he often cannot correct them, even when trying his hardest. Frequently, a child will be able to produce a sound or word at one time and not be able to say is again when he wants to. A parent may hear words when the child is playing alone or when he is angry, but when asked to say the same word, he can't. This can be very frustrating for both the child and the parents.

When I think about him being stuck in a body that he can't control, it definitely feels so surreal and unfair.  I can't really do anything right now except feel sad.  Of course, I know that everything is going to be OK.  We will figure it out and we will make the absolute BEST of it all.  And above all, I am ready to fight whatever battle I have to fight to get him what he needs.  But I am still sad.  He is such a good boy.  I am swimming with questions that I know I will eventually discover answers to...  But there is only ONE question I would really like to understand...

Why?

Just Why?

If someone could explain that one, I would be happy to pull up a seat and listen for as long as you need to explain it...

Comments

[Gretchen]

i love your blog. my son was also recently diagnosed with verbal apraxia. we went through the same anxiety over the whole autism thing.

cooper just started speech therapy last month and it's helping.

a few hints people have given me along the way...ProEFA fish oil (it seems to be really helping), The Late Talking Child book (helps with picking a therapist and insurance questions), and lots of wine :) Ha!

Seriously though - the fish oil and book are worth googling.

Best of luck to you and Keegan!!!

[Sarah Kristiansen]

well, once I wiped the tears away, I am thrilled. I know that sounds crazy but three short years ago, we weren't sure what kind of speaking life Sam would have, or wether we would ever be able to have a conversation with our son. Today, (I just posted) he is reading. Talking incessantly. Better than just communicating, or interacting, he has friends, and makes up stories, and epresses himself in ways we never thought he would. So though your road ahead is long and difficult, your rewards will be immeasurable, THAT I can promise. I remember to the day he said, "I love you too". And so will you.

And remember, I'm here anytime you want to talk apraxia...or anything else for that matter.

No go go go, Keegan, buddy.

[Steph]

I'm so very happy that you've been given an answer so you can finally move forward!
Don't concentrate on the "why" because you'll never have the answer you want. Only focus on the answer you have and the way to help your love bug boy! He is so precious and sweet. You never know the things you will learn through this process. Maybe the answer to your "why" is so that you will be able to help another mom down the road. Or maybe it's to help someone going through this same process with their child...only you don't know you're helping them through this blog. The answers are endless.
Make the best of each new day with all the good, bad and frustrating things that go along with it. Learn from every experience and make the best of every obstacle. You are your children's example. You've shown them incredible strength, determination, and love and you've taught them not to give up no matter what! You are an amazing mom who loves her children and would do anything for them! Keegan is so lucky to have you as his voice, fighting for an answer and working towards finding his voice!
I will be praying for you and your family through all the tests and appointments!
I am a phone call/email away if you ever need anything!
*hugs*

[Kristinah]

Hallelujah, you have an answer. Steph I am so relieved fro your family. This diagnosis is tough. I am sure it's very tough right now especially, but its finally an ANSWER and it makes sense. You and your family are amazing people and I knwo that Keegan is EXACTLY where he needs to be. Keep on keepin' on. My thoughts and prayers are with your family.

[Donna]

I have left a comment once before that my sister is going through a similar situation with her 3 yr old girl. They live in Chelmsford MA which has been incredible with services for her daughter. My other sister is down syndrome and my parents moved from Nashua to Chelmsford because the services were incredible for her. My sister (mom of the Nora) just finished her public school evaluation and got everything they had hoped for (free intergrated preschool, occupational therapists, and speech therapy). It may not be an option now but keep in mind that MA usually offers more services through the public school system with no fight. Chelmsford is known for its services. I'm not sure how NH is with services but I thought it might be some good information for you!
Good for you for taking the time you and your kids needed even though everyone may not have agreed! I enjoy your blog!

[janice]

i believe so strongly that God only gives special people like Keegan to Special people like you to nurture and teach. you know his limitations, now go and encourage his strengths. be they art, music,dance. teach him to communicate through his wonderful spirit and inquisitve nature. YOU can do that because YOU are special and talented and patient.
teach him all that is special about him, and let the doctors help with what is broken.
never ever forget that this precious little boy was sent to YOU, and he will be fine.
yes, i am sure that the struggles ahead will be overwhelming, but teach him to love and laugh and enjoy.
teach him to enjoy the sunsets and draw his feelings.
you are blessed.
and we are blessed to have this little boy in our lives (enen though it's in blogland) LOL.

[Erica]

I have read your blog for a long time now & never posted.....but wanted to tell you my heart breaks for all your stresses right now. You seem like a devoted & amazing mother....and am glad you got some answers today for your darling child!

[Mind Body Shop]

happiness does not spring from the procuring of physical or mental pleasure, but from the development of reason and the adjustment of conduct to principles.

[Kim]

Oh, hon. I am glad to hear that you have been given a definite diagnosis to work from now. I am sorry that Keegs will have further challenges to face. But as another noter said, he is a very lucky little boy to have a Momma like you! Just know I'm here to listen if you need it. ((hugs))

[april]

I dont know whether to jump for joy or cry! That is wonderfully HOPEFUL news. Hope is a beautiful thing, dear. Emailing you about the why part!

[Carrie]

While I know you're wondering why, this is such a huge step forward! You never gave up getting to the bottom of things, and now that you have, you'll work your way to the top and Keegs will be even more amazing than he already is. Love you! *hugs*

[Jen]

I am just a regular reader of your blog. Not really a friend in the physical sense but a friend in that I come back faithfully to find out if you are your family are ok. And for the laughs you often give me. I don't think anyone can answer that question for you but believe that it will be ok. I have had many frustrating medical problems myself that have taken years to diagnose and although it isn't always the news to I want to hear I am always glad when I get the answers, so that things can move forward. He is very lucky to have a mom like you and you have to believe that he knows it even if he can't say those exact words. Be strong and keep us updated!