“The hardest thing that I have found about being a special needs parent is the feeling of isolation. Feeling that nobody “gets it”. I feel overwhelmed and exhausted. There are days that i am guilty of only seeing my child’s disability and not my child. I pay more attention to my child’s behaviors and not enough attention to him. Some days I have a pity party.
I have learned that sharing my feelings helps me cope and let others know that they are not alone,”
Please know that you are not alone! Below are links to journeys of other parents who have been where you are. We hope that some of their stories will help you on your journey.
When I was growing up I always wanted to have a little girl and a little boy when I got married. Doesn’t everyone?? Well, I got two boys and I couldn’t have been happier. When my oldest son Sean (5) was not meeting his milestones in words and talking his doctor suggested he be put into speech therapy. It helped and he started to say more things. On the advice of his speech therapist I went to Danville to see a doctor she recommended. I had no clue why I was there, I just knew it took me 6 months to get an appointment so I was going. I sat in the small examine room while they took Sean into a separate room to ask him questions and do a few tests with him. The doctor and PA came back and told me my son had PDD-NOS. What?? I had no clue what they were saying and then I heard that dreaded word ..autism. I sat and thought my kid doesn’t flap his hands, yell or hit. How can this be?? They asked me if Sean had any brothers and I said yes but he’s only 2. Two weeks later in the same office my second son was also diagnosed. I cried all the way home from both doctors appointments and tried to figure out why? What did I do? What didn’t I do? Where do I go from here? The next morning remember laying in bed thinking I can just stay here or I could get up and help my boys in whatever way I could. I got up and put everything I had into getting them help they needed.
Chris & Ken’s Journey
Mckenna was born in February 2005 at 37 weeks. The pregnancy was complicated by polyhydramnious (too much amniotic fluid), and she was delivered via c/section. She did not look so great at birth and did not want to breathe. She had apgar scores of 2, 5 and finally a 9 at ten minutes. After 48 hours of desats (decreasing oxygenation) and apnea, she was transferred to The Children’s’ Hospital of the King’s Daughters NICU where she spent 5 weeks. Mckenna was found to have primary aspiration; meaning whatever she took by mouth went straight to her lungs so she was NG tube fed for most of the NICU stay. She also was diagnosed with reflux, sleep apnea and pigmentary retinopathy. Mckenna failed her hearing screen also. After normal blood chromosomes were done, the geneticist was stumped. Mckenna was discharged with an NG tube and apnea monitor and had just passed a swallow study for thickened feeds. She was able to take the needed volumes of thickened feeds and the NG tube was taken out after one week at home! Yeah!
Finally, at 7 months of age, we agreed to a skin biopsy while Mckenna was under anesthesia for tubes for her ears. That is how we got her diagnosis of PKS. We were so blessed to find an on line support group, since PKS is so rare. We needed to “talk” to others so we would understand more about our kids. It has been so helpful. Finding her diagnosis was a curse and a blessing, I remember getting the information from the geneticist that painted the bleakest picture. I kept is all together and as soon as we got in the car I sobbed for an eternity. I read that she will never walk or talk and became determined to push her to achieve amazing things!
Fast forward to 2016 and my 11 year old just finished 4th grade, in a typical classroom with pull out and push in services in the areas she needs extra help. She walks, runs, plays Challenger baseball and dances. She is stubborn and determined and I feel that is why she is doing so well. Her verbal skills are delayed but she is reading and communicates very well.
Sometimes I let my head get all clouded with thinking about the future, but I have to push that away and focus on today. I have no idea what the future holds for her, if she will be able to work, or live independently. I do know that she is amazing, and is the kindest, funniest little girl on the planet!
My son Liam was born in February of 2008. He appeared to be a normal baby. At six months old however we noticed that he wasn’t gaining weight. I was told that it was reflux and not to worry. At nine months the weight was still very much an issue but we started to take notice that Liam wouldn’t make eye contact, he also wasn’t rolling over, sitting up, babbling, pointing or playing with toys. I decided to get him into early intervention because I believed things were not as they should have been.
When Liam was born he was 8.8 lbs, at one year he was 12.6 lbs and the doctors beleived we might be dealing with more than just a simple delay. We started seeing Dr Williams at Hershey Medical Center and we enrolled him in John Heinz for OT, PT and Speech.
Finally at the age of two we went to Geisinger and got the diagnosis I had been dreading. Liam was Autistic. All the dreams I had for this child evaporated, poof. I was told that Liam was very mild and we might not even notice he has a problem. We were hopeful.
Liam is a 9 year old boy with a kind heart and a great sense of humor. He was recently got the diagnosis of intellectual Disability so Liam gets a lot of extra help in school, but he’s doing it. This summer Liam started having seizures close to 100 a day so we are working on trying to find a medication that works for him. This is a set back but we are hoping that with the right medication he will be back on track.
I found that the dreams that I originally had for my son were just that, dreams. We live in the here and now and I don’t put pressure on him to be something that he’s not. I’m very proud of my son and the person he is becoming.
Our story started with Mikey being wished for with every birthday candle blowout , every shooting star, every prayer in every religion ! Ten years and thousands of dollars later , I was pregnant!! Perfect pregnancy (after a scare the first month). Amazing baby shower with 100 people , it was all I dreamed of. That was until they had to deliver my son by an emergency c-section almost 2 months early.
It was the happiest yet saddest day of my life. I didn’t get to see my son, touch him or hold him. They took him away to another hospital and all I could do was hold his picture til I was released. That was the hardest thing ever, until I saw him laying in the NICU, fighting to stay with us. I thought that was the hardest of times. Little did I know what the upcoming years would bring. Numerous hospital trips, surgeries, medications.
The first few years , they blamed his delays on being a preemie. By age 2 he didn’t walk, age 3 didn’t eat and age 4 didn’t speak. His first diagnosis came, that was Autism Spectrum NOS. At age 5, he was officially diagnosed with RTS, Rubinstein Taybi Syndrome, a very rare syndrome. We were told he likely wouldn’t walk, wouldn’t talk, wouldn’t be ” functional”. My heart broke again.
Fast forward, he is a very sweet 11 yr old with big blue eyes, blonde curls and a smile that brightens my everyday . Medical issues still run his life. He sees 13 specialists out of town. He has nursing services, more medical equipment in his room than a hospital. John Heinz Rehab has been his second home for years now for therapies. But he is walking, starting to feed himself and has some speech! Goals become reality and we just learned to never count this child out!
He has much to teach me! If it wasn’t for him, I wouldn’t have met the amazing people in our life who got us this far… And if it wasn’t for him, I would not hold my favorite title as mom!
Frankie is 12 years old, she has power to light up your day even when your down, she teaches us life is precious and short and to cherish every moment, despite all of her challenges, she awakens each day with a smile.
Francesca suffers from a Neurological disease called Rett Syndrome,she also has an additional diagnosis of Common Variable Immunodefiency.
Rett Syndrome causes her hands to wring to the point that her joints are swollen 3x the size they should be. (This movement is not a stim it is coming directly from her brain.) She suffers each day with severe GI dysfunction causing much pain on a daily basis. She has two separate tubes in her stomach one in her stomach for venting and meds, and a jejunal tube to release air from her intestines. Unfortunately Frankie also requires to be fed IV for 12 hour anywhere from 4-to all 7 days to sustain life. She also has severe lung issues, requiring a daily routine of 4 nebulizer treatments lasting 40minutes and 3 airway clearance treatments of 20 minutes daily. She is always monitored for seizures even though she hasn’t had one in 2 years. She is followed by Cardiology because she is at risk for Cardiac Arrest in her sleep. She has swallowing issues which makes her choke on her own saliva and sometimes aspirate. She suffers from bilateral knee/ankle rotation, she has brittle bones which resulted in her femur being fractured. She has a central line and developed thrombosis and requires blood thinner injections daily. She has apraxia, ataxia, dystonia making movement painful. Her biggest obstacle in enjoying life is she cannot regulate her body temperature, in heat she requires to be on oxygen and a cooling vest, if her body become too warm she goes into respiratory distress, so she can’t go outside in the summer a lot. She has poor circulation in her legs and feet, making them feel ice cold all time. Her Immunodeficiency basically means she can’t fight infections, she gets an IV infusion weekly to help give antibodies to fight infections. The everyday cold for us turns into a week hospital stay for her. She spends a good portion of her life as impatient mostly at Children’s Hospital of Philadelphia. She attends multiple doctor appointments with 10 specialists, and attends therapy to maintain movement. The simple things we take for granite like sitting on your own, she needs support or would fall, and she needs 100% total care for every aspect of her life. She requires round the clock nursing care. She is cognitively age appropriate she understands everything you say, but she locked in a body that won’t let her respond.
10 years ago my family’s life was forever changed by a phone call, her Neurologist had ran tests 4 months earlier, the news on the phone was Mrs Scarano we know what is wrong with Francesca, at first a sigh of relief thinking she can now get help to relieve all her medical issues, but the next sentence was, I am so very sorry to tell you your daughter has the worst disease she could have been diagnosed with, with tears holding back I asked is she going to die? We don’t know how long she can live, she won’t be able to talk, she will not be able to use her hands, and she will require round the clock medical care. That being said she already was trying to walk, crawled yelled Daddy and Mommy and called her brother D short for Domenico, she yelled at dog for barking, They said she will lose all of her skills as days go by, she will lose eye contact, develop seizures and other medical issues. I told her we need to redo the test this has to be a mistake, please not my beautiful daughter that I dreamed of , I couldn’t talk I fell down our stairs, I couldn’t even tell my husband what they said, my son sat in tears not knowing what was going on. After many phases first being acceptance, I got myself together and decided we would live for today and we would fight every day for her, that was many years ago, and we have never stopped.
Move forward as the years went by and I learned how to navigate thru many systems, Medical Assistance, MHMR, Therapy, IEP’s not easily I may add. In our path we were able to attend a handicapped preschool Children’s Association , for me probably the biggest turning point in finding peace, you see I never left preschool I waited in another room while she attended with her nurse, always there in case she had emergency. But I wasn’t the only mom doing that, hence comes where my support, and my lifelong and (lifeline) friends come in.
We learned from each other, we went out in public together not feeling isolated, we passed tips along, they were there to listen to me cry on my bad days and I was there to listen to them when there days came. 10 years later and those very same special needs kids are still best friends and the smiles they create when there together could never be forgotten. I still lean on each one of my friends for daily support as they do too. You can never know what we go thru and feel unless you are one of us, and believe me you don’t want to be.
In conclusion our beautiful daughter has taught me so much, that I am sure I would have never learned if it had not been for her, she brings more joy and happiness to our life than you could imagine.