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Statement of Faith

Claudia Burrows

    First of all I would like to tell you a little bit about myself, so that you see the context in which I write about having a child or children with Fragile X. I am a single mother (divorced) with 2 boys with Fragile X at home and a daughter with Fragile X who lives with her dad (she is a senior in high school). I am a paramedic and I work full-time in the ER, part-time as a reserve firefighter/paramedic and I also do EMS at special events/venues for a private service. As you can probably surmise, I am VERY BUSY! So, enough about me. I am not going to go into great detail about the kinds of things you can read about on a Fragile X site or see in Fragile X literature. I will try, in this letter, to capture some of the things that are not mentioned in the literature, most of which actually have a larger impact on daily life than the "classic characteristics" mentioned in books.

    Life with children with Fragile X is always interesting. It is usually tiring. It is punctuated by moments of absolute joy and wonder at the uniqueness of these children. My children are Catherine (17), Phillip (15) and Christopher(5), and despite the fact that all three share the diagnosis of Fragile X, they are each SO different from the other and so wonderful in their own way.

    Catherine (17) has the full mutation and has learning disabilities in math, but her greatest challenge is social interaction with her peers. Catherine has a diagnosis of Asperger's Syndrome (high functioning autism) and this diagnosis is very accurate for her. She has great difficulty making friends and has difficulty with non-verbal social cues which make her appear "odd" at times. She has intense interests and what social interaction she does have usually centers around those interests. She is a senior in high school this year and will go to college in the fall. She will need supports from her father, stepmother and myself in order to succeed in college (she is very fortunate to be able to live at home- with her father- and attend the college where her father is a professor).

    Phillip (15) in some ways is the most challenging of my 3 children to parent because he has vastly differing skill areas.....Phillip has a diagnosis of autism and is extremely intelligent (read at age 3, can do 3-digit x 3-digit multiplication in his head, etc.). Still, Phillip could not print his own name until this year and he has significant problems with impulse control and aggression. Phillip is on Seroquel for behavior and without it, he can be violent and unpredictable. On the medication, however, he is only aggressive if he is frightened. Otherwise he is a delightful kid, who has charmed many a person who will take the time to "meet him where he is". Phillip has a profound spirituality, and has since an early age, and has a true burden for the church and it's response to persons with special needs. Phillip's spiritual insights are remarkable and I believe God has even spoken to him/through him in dreams that Phillip has recounted. Mind you, Phillip cannot verbally recount details well, but he can type (he doesn't use vowels except when essential when he writes, because he LOVES "Wheel of Fortune" and vowels COST MONEY!!!!! LOL). Phillip is extremely observant, and "never misses anything"... this in spite of the fact that he talks almost constantly (verbal self-stim, not meaningful conversation). He is an excellent judge of character and sees the hearts of those around him with resounding clarity. And he has a great sense of humor. He keeps us laughing!!!!! He loves videos and books so the video store and library are our favorite places to go on an outing (unless you count Burger King). Here is an email Phillip sent just after the war in Iraq began (Amy is the caregiver when I am at work, Christopher is Phillip's 5-year-old brother). It may take you a minute to understand what he is saying (few vowels, remember, they cost money). Try reading it a couple of times to figure out where the sentence breaks are:

we just prayd for presidnt army guys peepl they ar savng christphr prayd to i love amy she beng nic and thot it was good to pray togethr evrybody shood tell churchs to pray to rit nams of peepl on papr and pray for them as church im thinkng angls will help win war  keep peepl saf think abot angls standng arond unitd stats othr lands everywar jesus  will help mak bad stuff stop good stuff happn time for wheel of fortune gotta go from phllllp

That's my boy!

    Christopher is my 5 year old surprise gift from God. I was divorced from Catherine and Phillip's father (he was abusive and couldn't take the "defective" kids I had given him...after all he is a Yale Grad and a college professor, so there!) and I married a co-worker 5 years later (who was having an affair before Christopher was 6 months old). Christopher was an unplanned pregnancy and I got lots of advice against keeping him/continuing the pregnancy. But Christopher has been such a blessing to our family! Phillip was hospitalized and spent 3 months away from home in a residential facility 2 years ago (medication adjustments/behavior problems/puberty all conspired against us) and I don't know if I could have survived the horror of having my (older) son living away (it was AWFUL!!!!!!!!!!!!!!!) if I hadn't had Christopher. Where my other 2 children are extremely tactile defensive (hate being touched), Christopher is a cuddle bug. Now, don't misunderstand, Christopher still has sensory integration problems (I have yet to hear of a child with FraX who does not---SI therapy is essential for these kids when they are babies/toddlers/preschoolers) but he lets me HUG him!!!![See the attached file] Christopher has fewer "savant" characteristics that Phillip (Christopher is just beginning to read simple 3-letter words while Phillip was reading the newspaper at this age) Christopher is progressing more along a "slow, typical" developmental/academic timeline. Where Phillip has never been able to play imaginatively, Christopher can. Phillip has always pretty much just used toys as "stuff to manipulate or line up in a row". Christopher actually interacts with his toys, playing quietly by himself with his fire trucks on the floor or re-enacting scenes from his favorite TV shows/movies (Toy Story, Thomas the Tank Engine or Emergency! --yes, the 1970's LA County fire/paramedic TV show.....we have it on video and he loves it! Genetics can be strong I guess since his father is a firefighter/paramedic like myself).

    It is intense parenting children with Fragile X, but it is wonderful. My boys will need care the rest of their lives, I'll never see them win an athletic or academic scholarship to college (or go to college for that matter) but I also won't spend nights wondering if they are safe/out drinking/doing drugs.....because they are almost always by my side. It is hard being a single mother of Fragile X kids. My boys' fathers are not terribly involved or helpful, leaving me to always tend to the details (both my boys also have asthma and Christopher has other health problems not related to the Fragile X). Men who want to "date" me usually run the other direction when they hear about my kids. That's OK. If there is a man out there for me, he will have to be pretty special...that's what we deserve! I stay tired, I am grateful for a wonderful caregiver when I am working (!!!!!!!!), and I am blessed by the children that God chose for me. They have made me the strong person I am today and I wouldn't trade them for anything in the world!

Feel free to share my email with anyone who would like it.

Blessings,

Claudia Burrows