Dear family and friends,
McKenna has been the greatest challenge that Spencer and I have ever had. I would take three high risk teenager girls over one 35 pound three year old. Trials make us bitter or stronger. I prefer the latter.
We have now had Mckenna for one year. When we first got Mckenna we had no idea that she was so broken. She came to us 26 months old with a five word vocabulary, she now has over 250 words in her vocabulary. She was anxious about food -- there was never enough, gorging until she would throw up and hoarding sippy cups under her bed. It is really sad, she never once asked for her mother. She hadn't formed an attachment to a parent figure, causing Reactive Attachment Disorder. I thank God that we got her before the age of three because at three years old attachment seals over like cement. If attachment has not occurred before that time it becomes like chipping away at cement.
We worked so hard, it took months before she would drink from a bottle and let us rock her to form trust. We had over 30 appointments a month in therapy. Later came brief moments of eye contact. I saw the REAL Mckenna only 2 times in our first 11 months with her. Those brief glimpses kept me going on days that I was emotionally done with her. When Mckenna's Psychiatrist told me that she had attached, I almost cried with joy. It took so much heartache and rejection after rejection. Her attachment is still not secure but it is there. I continue to feed her at least one meal a day to help her remember to trust that we will take care of her and that she will have enough food.
This summer Mckenna's attachment was getting better but her anxiety was getting worse so last month we went in for more assessments.
On top of the disorders from neglect, Mckenna was diagnosed with Autism spectrum last month. She has PDD (Pervasive Developmental Disorder:
http://en.wikipedia.org/wiki/PDD). We are still trying to learn what that means.
Autism has a spectrum of disorders with autistic disorder being the most severe, Mckenna has a higher-functioning form. 1 in 1,000 children born in the U.S. are diagnosed with PDD. Mckenna is very intelligent and clever. PDD is a neurological condition, the cause is genetics and possibly infection, immune system problems, allergies, even drugs or environmental pollution. PDD children tantrum A LOT until about age 5 1/2 to 6 years old because their brains have mini seizures. Mckenna's vocabulary/language is advanced considering that she has PDD. With early intervention and LOTS of support PDD people go to school, work, marry and have families.
This Wednesday at 7pm Kids On The Move in Orem has a panel with adults who have autism discussing what it is like to be autistic. If you are interested we would love to have you come.
Red Box has a great movie out called
Temple Grandin. Dr. Temple Grandin has a different form of autism than Mckenna but the movie helped us understand a little better what it is like to be in Mckenna's skin. Anxious! Like McKenna says, "I need to calm down."
Carie sent me a great link to a pod cast. Mckenna is not as severe as the two stories (act one and two) in the pod cast, but I totally relate to the parents of Reactive Attachment Disorder and autistic children:
http://www.thisamericanlife.org/radio-archives/episode/317/unconditional-loveMckenna's senses are much more sensitive than ours, she hears things 10 times louder than we do, lights are much brighter. Textures are wonderful or exhausting to her. She craves physical stimulus similar to an itch on your back that can't be reached. Sometimes she can't get enough stimulation and other times she is way over stimulated, it is a fine line. She doesn't read social cues, so social situations and groups of people stress her out. Some suggestions.....When you greet her, if she doesn't greet you, she is probably overwhelmed, it's best to just ignore her. But if she approaches you, by all means quietly greet her remembering that loud noises stress her out. It is better to go into her world and bring her out to our world. When she behaves like a wild animal, look at her and think "she is crying for help." A mom with an autistic son recently told me that autism is like having a little purple monster in the brain that runs around pulling out plugs and pooping all over.
Autistic children tend to have a lot of allergies and immune system problems (Mckenna had tubes put in her ears last June after 8 ear infections in 3 months). She is on a special diet that helps her tummy and brain a lot. No gluten (wheat, rye, and barley), no casein (dairy), no food dyes/preservatives and very little sugar.
She really likes coloring, school, riding the bus to school, play dough, riding her bike, touching water, swinging, back scratches, baby wipes, lotion, singing songs, and stickers. She is very proud that she poops and pees in the potty.
We now have medication. The changes we see happen slowly but the progress is very exciting. Instead of being a terrorized hyperactive child, she is now a happy hyperactive child. Yeah for drugs! We get more glimpses of the REAL Mckenna verses the SICK Mckenna. Last month she started saying, "I love you Mommy" or "I love you Daddy."
Every time I have to write Mckenna's surname (Morgan) it pulls at my heart. It reminds me that we have not finalized the adoption and she is not ours eternally, yet. We are working on accessing subsidies for adopting a special needs child via social security disabilities because therapy and medication is expensive. Therefore, we will probably not have the adoption finalized for a while still as we wait for more word on the SSI help.
This is a long post but I wanted to communicate with you concerning our needs and appreciation of your support concerning the ongoing saga of Mckenna. We could not do this without your support. It is REALLY hard. But we know without a doubt that it is the right thing to do. Love is greater than fear! I think that sometimes we
are given more than we can handle..... so that we are forced to ask for help - both from the Lord as well as from family and others. We are very blessed.
P.S. This is Spencer. I know at times it may have appeared that I was not on board with the decision to keep McKenna because, well, it was true - I wasn't on board. I kept hoping that Danielle would change her mind and give McKenna back to Sarah (her birth mom). I kept seeing McKenna as a temporary trial that we had to endure until some not-so-distant future date that we could finally get rid of her. Come to think of it, this manner of thinking was really damaging not only my relationship with her, but it was even damaging me, to an extent. I recently (within the past month) came to the understanding that this is something that not just Danielle, but the Lord wants me to do. I realize how hard it is to love her and to eventually accept her as our own (which I'm still struggling with), but I feel that if the Lord wants us to do something, we should probably do it, regardless of the difficulty of the task. I was only able to recently come to this understanding via some heavy soul searching and a ton of prayer and faith in the Lord. I might ask each of you to say a prayer - not necessarily for us, but for yourselves - to learn that this is what God wants our family to do. It's hard because I can see in so many of our family members' eyes the sense of foreboding and fear that McKenna might end up tearing our family and marriage apart. All I can ask is that each of you have the faith and acceptance that everything is going to be okay. I realize that it is going to be hard, but I know it will be worth it in the end.
We are not saints or think we are better than others for having Mckenna, we are not unique in our trials, we all have hard things in our lives in one form or another. We are taking it a day at a time, just like you.
Love,
Danielle and Spence
Marilyn (Mom), Me, Liz, Jason
