Mom Diary

The time up until his first birthday

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During the 9 months I carried my son I dealt with a lot of issues from infidelity, to family issues, and trying to get situated for the mini-me I was about to have. I gained about 60 pounds (all stomach, and this may or may not be important to you come year the next chapter). The hospital I chose to take care of my prenatal care and my delivery voiced concerns over possible stress the baby may have. The hospital requested I had a series of stress tests (they observed my child via ultrasound). During the tests they attempted to wake him up by pumping noises into my stomach. Although my son did wake up when they scared him, he went right back to sleep. The only thing the test told me was that my son had a lot of hair (something I already knew due to the infamous pregnancy gas). As time went on and I got closer to my 3rd due date (which was 1 month after the 2nd due date), I had to go in for my check ups weekly.

The week before my final due date I started to dilate. The doctor wanted me to schedule another appointment the following week. The RN read over my paper work and said..

You are dilating and the doctor wants you to come in next week? Here, take my card. Walk around after you leave here and I guarantee you will wake up in labor. call me and leave a voice mail telling me what you have.

The appointment was on October 6th on a Friday..

My son was born on October 7th 2000.

If you think he looked big in the introduction picture in the first page you are right. My son weighed 9 pounds, he also had a “dimple” right below his neck. The hospital he was born in called it a dimple and told me not to worry about it. A couple of weeks after he was born, he was due or his first check up. The first check up never happened at the initial pediatrician office because the front desk clerks did not check us in until they finished gossiping behind the counter…and at that point it was 15 minutes after the scheduled appointment time. I was upset at the time but that was the best thing that could have happened to us. I was so upset I decided to switch hospitals. The new primary care doctor examined my son and notified me that the “dimple” was actually a cyst and needed to be removed.

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So, at the age of 4 months, my son had his first surgery. The cyst was so far down that they could not stick it closed and I had t keep cleaning out his wound that went down to the bone. My son came through like a champ, and I learned the limits of my nerves!

During his first year my son did not attempt to talk…which was not normal. Although my son would mimic the mouth movements of the people around him, he did not attempt to make sounds. My son also did nt attemt to walk during the time frame most over kids attempted to walk. This was a red falg to me at first, but family members and friends kept telli me that everything was ok and I worried too much…

My son also did not gain weight as rapidly as he should have, even though he was eating often (I nursed him so I know). After running numerous tests, we found that my son had rickets.

Thus concluding his first year on earth…

 

Year two

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After discovering my son had ricketts, we added concentrated vitamin drops to his daily diet, and decided I needed to start weening him off.

Once the vitamins started working and he was no longer in the rickets realm, he started attempting to walk…unfortunately one day he was attempting to walk down a small set of steps and he fell and landed in an awkward position resulting in a hair line fracture of his femur . The fracture was so rare, it took the hospital a week to come up with a way to handle it. They ended up placing my son in a full body cast. Imagine this happy little boy

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In a full body cast for a month and a half!

Ok, I am not going to go on and allow you to imagine this boy as being unhappy in his cast…he actually adapted to it pretty well. Towards the end of his cast captivity, my son started attacking his loving family with the cast! That alone shows the playful personality of my son…and I am blessed to have such a great boy.

During a follow up check up after the cast removal, we discussed his lack of verbal communication progress. Our wonderful doctor started specialized testing for us.

  • hearing test
  • speech and language evaluation
  • blood tests – for common diseases that result in my son’s issues

After numerous tests during the first half of the second year of my son’s life, we started speech therapy with Elwyn once a week.

Under their instruction, I had my son go through the process of being declared disabled…and judging by the concern of all of the doctors involved, it was probably permanent.

Years 3, 4 and 5

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The process of having my son declared legally disabled was a long and complicated one…it was way more complicated than it needed to be. The section of the city I lived in at the time was grossly neglected, therefore the case managers for any social assistance program knew they did not have to do their jobs, and they would have no action taken against them. If people are uninformed of their rights, they will take your words at face value.

The initial claim for disability was denied, as they are in most cases. I then went through with the appeal process and they over turned the decision of the local office. One the one hand that is excellent, on the other hand I should have known our local office would be a major issue. Even though the state approved the claim, it was now back in the hands of the local office who denied him the first time because they did not want to do the work. After the approval went in the system it took TWO YEARS for his case to be properly filed…and it would still be in limbo if I did not contact the Social Security Office in Maryland.

Our experience with Elwyn was wonderful. They constantly evaluated my son’s progress and increased his instructional time because they did not think he was making appropriate progress. Alas, he hit the age of 3 and was too told for their program. The next company to take over his case was Ken Crest. We had a wonderful experience with them as well. Elwyn came out to our house once a week and did speech and language therapy, Ken Crest picked my sn up from his day care 3 days a week and had him in a classroom setting with other children with cognitive and speech delays during school hours.

During all of this time we still attempted to classify what his problem was, no dice.

Around the time my son turned 4, we had a break in. Our house was cleaned out in broad daylight. The neighbors in the house behind us called the police at 12:00pm, the police arrived at 12:05pm. The police knocked on the front door of my house and then left…even though the call reported the burglary in the rear of the house.

The next day detectives received an anonymous tip telling them who broke into the house, where they lived, and where they took the stolen items. The police called the person back and asked them to come in to make a statement, and the person that tipped them off refused. I don’t blame them, if the police would have done their job the first time, there would be no need to make that statement. We had to do an emergency move because

  1. it was our neighbors that broke in
  2. when they broke in they also cut my phone wires, so I couldn’t call police if I was home
  3. the police in that area simply did not care….just like the people in the social security office

The emergency move was to a bad area, and my car was vandalized there numerous times. When it was time to place my son in school, Ken Crest did a full evaluation on my son so the school district can be prepared and offer the services he needed.  The Philadelphia School District lost the paperwork and I was told it would take a year for them to test my son for the appropriate plan of action for him.

I knew it was time to get out of Philadelphia.

Years 6,7 and 8

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With the aid of numerous friends and family I set out to buy a house outside of the city. I cannot tell you the relief I felt to finally have a stable and SAFE place to raise my son. Now, the only mission in front of me was to get the help he needed.

During this time we had constant check ups with my son’s primary care doctor. Every report card period we had an appointment, every time I met with a specialist we had and appointment, every eczema break out we had an appointment. These are the specialists we saw during this time.

  1. Occupational Therapist
  2. Educational Psychiatrist
  3. Speech and Language Specialist
  4. Auditory Processing Specialist
  5. Behavior Specialist
  6. Neurologist

This is what we found out..My son has

  • “Mixed Expressive and Receptive Language Disorder”
  • an issue retaining memory
  • a problem puling out meaning from what people say to him
  • a problem pulling out meaning from what he reads
  • nothing in his DNA, his blood, or brain that can point to the cause of his problems
  • a strong grasp on electronics (wonder where he got that from)
  • a pleasant demeanor

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We have had blood tests, brain scans, and every other test you can think of to pin point anything that could help in getting through to my son. He has the ability to learn, just not the way the average person does. I am currently fighting our school district because he needs to be taught in a different manner, and they will not give him more aid other than one hour of speech therapy a week…and that is not enough.

To all parents out there I want to tell you these things…

  1. You are NOT alone– If you have a special needs child, I know you feel like you have no one to talk to. I have started a group you can post on.
  2. DO NOT LISTEN TO PEOPLE THAT DON’T KNOW YOUR CHILD-During this entire process I have had people tell me my son has nothing wrong with him. If that person is not a doctor, do not take their word for it. One of the instructors in my son’s current school told me he may grow out of it…I don’t think you grow out of a permanent disability.
  3. Be ready to fight-Lawyers, Doctors, Advocates…they are all great but the best person to fight for your child is you! Never stop.

I will continue to update this page as I encounter different adventures involving my son.

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